Housing Works AIDS Issues Update

End the ban of federal syringe exchange funding today

Tue, 14 Jul 2009 18:05:00

Last week, AIDS activists staged a civil disobedience protest in the U.S. Capitol rotunda, demanding Congress lift a senseless federal ban on syringe exchange funding. Twenty-six people were arrested. Worldwide media attention played a role with pressuring Congress to take a big step toward lifting the ban the very next day

Annually, nearly 8,000 Americans contract HIV/AIDS and approximately 12,000 Americans contract the hepatitis C virus directly or indirectly from sharing contaminated syringes. Syringe exchange programs are proven to be cost-effective and lifesaving, do not promote drug use, and provide a conduit to primary health care for hard to reach populations. Since 1989, Congress has banned the use of federal funds for syringe exchange programs, by attaching a rider to the Labor, Health and Human Services Appropriations bill.

In a historic move on Friday July 10th, Chairman David R. Obey (D-WI) and the Labor, Health and Human Services Appropriations Subcommittee removed the ban from the FY 2010 appropriations bill. In a statement issued Friday, Obey championed the authority of local communities in deciding this issue, stating, “The judgment we make in this bill is that it is time to lift this ban and let State and local jurisdictions determine if they want to pursue this approach.”

But the fight is far from over. We need your help to ensure that the ban is not reinserted or to prevent new restrictions on syringe exchange from being added during the Appropriations process. The time is now. The full Appropriations Committee will vote on the bill on Friday and it will quickly go to the House floor.

This is our opportunity to end the ban and restore science and justice to national HIV prevention efforts. Help us prevent an amendment to reinstate the ban from passing. Contact key representatives on the Appropriations Committee immediately to urge him or her to block such an amendment and support syringe exchange programs. To use AIDS Action’s quicksend form, please enter your zip code.

This bill is targeted directly to members of the full Appropriations Committee. If your representative is not a member of the Appropriations Committee, you will not need to send this alert. However, please be prepared to send an alert when the bill comes before the full House as early as next week.

Housing Works scores major victory!

Mon, 13 Jul 2009 15:57:00

Last week, Housing Works and other activists staged a civil disobedience protest in the U.S. Capitol rotunda, demanding Congress lift a senseless federal ban on syringe exchange funding. Syringe exchange programs have been shown to dramatically reduce HIV infections.

Twenty-six people, including Housing Works President and CEO Charles King and other staffers, were arrested. Worldwide media attention forced Congress to take a big step toward lifting the ban the very next day !

Read more about the civil disobedience in the Capitol and Housing Works’ HIV prevention services such as syringe exchange.

Court Rules in Favor of Transgender Woman, Against Transit Authority

Mon, 13 Jul 2009 13:57:00

In a major win for transgender New Yorkers, an appeals court ruled unanimously that New York City Transit Authority employees are not exempt from the New York City Human Rights Law, and thus can be held liable for discrimination on the basis of gender identity and expression.

The Appellate Division, Second Department (“Appellate Division”) upheld the lower court’s ruling in Bumpus v. New York City Transit Authority, refusing to dismiss the case against a Transit worker who, Plaintiff Tracy Bumpus avers, launched a sustained and vicious transphobic assault on her at a Brooklyn subway station. In that February 2008 ruling, Justice Robert J. Miller explained, “The Human Rights Law affords protection to transgender people in New York City. By riding the subway, a transgender person doesn’t become less of a person and lose the protection of the Human Rights Law.”

This is the latest in a series of notable victories for Bumpus in the burgeoning field of transgender rights law, and the last option for the Transit Authority, which has spent two years appealing the case. Last year, the Appellate Division refused to overturn another lower-court decision affirming Bumpus’ right to sue Transit for negligence in the matter. And in May, Justice Miller ruled that Bumpus’s partner cannot be asked “plainly improper” questions about his sexual orientation simply because gender discrimination is at stake.

“The filing of a civil lawsuit is not a passport which allows exploration or invasion of the most intimate beliefs a person may have based on half baked psychology or timeless stereotypes,” Miller explained.

Statewide, there is no law preventing discrimination against people on the basis of gender identity and expression. In March, the Gender Expression Nondiscrimination Act passed through the Assembly, but because of the Albany fiasco, it has not passed through the State Senate.

“The Transit Authority has over 40,000 employees,” Housing Works’ Senior Staff Attorney Armen H. Merjian observed. “We are gratified that the Appellate Division has affirmed that these employees are not exempt from the New York City Human Rights Law, the only law in New York that protects transgender citizens from discrimination. And we are saddened that the Transit Authority sought to establish otherwise.”

26 AIDS activists shut down U.S. Capitol

Thu, 09 Jul 2009 15:44:00

Twenty six AIDS activists from across the Northeast U.S. were arrested Thursday after staging a raucous demonstration inside the Capitol Rotunda on the eve of key Congressional votes on appropriations for life-saving AIDS programs and one day before President Obama’s first trip to Africa since his election.

The activists decried the Obama administration’s failure to make good on a range of AIDS campaign promises including his pledge to lift the federal ban on funding syringe exchange, to fully fund lifesaving global AIDS programs, and to fully fund AIDS housing programs in this year’s budget. The activists demanded Speaker Nancy Pelosi, Senate Majority Leader Harry Reid and other Congressional leadership fix President Obama’s flawed budget proposal.

“HIV is not in recession, so why are we bailing out the bankers but breaking promises to fund life-saving programs here in the U.S. and around the world?” asked Omolola Adele-Oso of DC Fights Back. Informally titled Sound the Alarm, the protest underlined the fact that every nine and half minutes someone in the U.S. is infected with HIV, yet Obama refuses to respond to this urgency.

Housing Works President and CEO Charles King, who is living with HIV, was among the activists who were arrested. “Obama can no longer the ignore the promises that he made in order to win the support of Americans who care about ending the AIDS epidemic. So far, he has let us down on all fronts,” he said.

The activists demands will surely reach the White House. Thanks to media outlets including Politico.com and the Associated Press (as well as tweeters) news of the protest instantly spread across the country. See photos of the demo and video (below).

How the demo went down

Around 50 activists, who had obtained tickets for tours of the Capitol, gravitated to the majestic, tourist-filled rotunda at 10am. A designated activist revealed a T-shirt saying “Congress: Clean needles now! HIV housing saves lives! Fight global AIDS!” and began chanting “AIDS funding now!” and “Needle exchange now!”

The 26 people who planned to participate in the civil disobedience action then revealed their protest tees, gathered together, and used zip ties to link themselves with white plastic chains (befuddling police who later had to scramble for bolt cutters to break the chains).

Several activists then unfurled an enormous banner bearing the same message as the T-shirt, parading it around the Rotunda.

Capitol Police instantly began clearing the Rotunda of curious tourists, media (who were tipped off before hand) and the activists who had hoped to provide legal (and moral) support. The demonstrators managed to chant their message for 45 minutes before being hauled away by police. They were charged with disorderly conduct, unlawful gathering and loud and boisterous behavior.

All of the activists were released in the afternoon.

The protest, which included representatives of Housing Works, CitiWide Harm Reduction, D.C. Fights Back, Harlem United, New York AIDS Housing Network, Health GAP, ACT UP Philadelphia and other groups, was intended to bring attention to three issues where the administration has failed to live up to its promises:

AIDS housing funding

Obama’s budget flatfunds the Housing Opportunities for Persons With AIDS Act (HOPWA), the only federal program that funds housing for people living with AIDS—even as the number of people with HIV in the U.S. is rising. Housing is proven to reduce the spread of the disease and save money on shelter and emergency room costs. Activists want to see HOPWA funding increased from $310 million to $360 million.

“We are here because we know that our friends, families, and communities are still dying,” said Larry Bryant of Housing Works, who was arrested. “From D.C. to California to Zambia people living with AIDS need Congress to act this week and need the administration to make good on its promises.”

Gustavo Pedroza, of the New York City AIDS Housing Network commented, “Housing is one of our most basic needs and a critical part of HIV treatment, care and prevention. Without it, other strategies to fight HIV simply don’t work. Given the rising cost of housing, President Obama’s proposal to flat-fund federal AIDS housing programs will mean low-income people with HIV will lose their housing, not to mention longer waiting lists for a life-saving home.”

Needle-exchange funding

The activists also denounced the administration’s failure to lift the ban on syringe exchange funding. “Thousands of people have died in the past decade because clean syringes aren’t available,” said Jose De Marco, an HIV-positive member of ACT UP Philadelphia and Proyecto Sol Filadelfia. “President Obama, who many of us worked to elect, promised to follow the science and lift the federal funding ban on needle exchange, but his budget explicitly included the ban. Now it’s up to Congress to show real courage where the President has not.”

And some members of Congress have gotten the message.

“I don’t know if that’s the most effective way to do it, but it does draw public attention to the issue,” Rep. Jim McDermott (D-WA) said in an interview with The Hill. “I think with the cost involved with someone getting AIDS, needle-exchange programs are actually cost-effective. “So conservatives ought to be for it. What they’re really saying is that we want them to die. And we want them to spend a lot of money while they’re dying.”

Global AIDS funding

Activists noted that despite campaign pledges to increase bilateral global AIDS (PEPFAR) funding by $1 billion a year and fully fund the Global Fund to Fight AIDS, TB and Malaria, the Administration’s budget proposal essentially flat-lines global AIDS funding. Unless President Obama and Congress keep their promise to fund the U.S.‘s fair one-third share of the Global Fund’s needed $6 to 8 billion, the Global Fund will have to cut billions of dollars worth of life-saving grants.

Crowley Says

Wed, 08 Jul 2009 16:38:01

In conference calls with AIDS advocates during the last two weeks, White House Domestic AIDS Czar Jeffrey Crowley continued to defend the Obama administration’s progress on HIV/AIDS policy and said that a basic structure for a National AIDS Strategy should be in place by early 2010. Many advocates were skeptical as to both the timeline and how much community input will be a part of the process.

“I feel like I’m balancing competing pressures,” Crowley said in a call with more than 200 members of the Federal AIDS Policy Partnership (FAPP) on Monday, noting that he needed to gather input from different sectors of society but also faces pressure to get things done quickly. He also spoke with more than 50 members of the Campaign to End AIDS (C2EA) last Thursday.

Crowley revealed some new information in the calls: Government agencies will ultimately advise and create the National AIDS Strategy, though his office will organize at least 10 formal town hall meetings throughout the fall throughout the country to gather community input. The first meeting will be on August 25 at the National HIV Prevention Conference in Atlanta.

Crowley said he doesn’t yet know if people not attending the conference will be allowed to participate in the town hall. He also doesn’t know where the rest of the town halls will be but said at least one will be geared towards Native Americans. Others will take place in areas hard hit by the epidemic and where the epidemic is growing. Crowley plans to reach out to people who are HIV-positive, as well as people who are not directly involved with fighting AIDS. The White House will also create an online forum for gathering comments.

Once the town halls are complete in the fall, government agencies will get to work drafting the strategy. This timeline suggests that a National AIDS Strategy wouldn’t go into effect until early 2010, at the very earliest.

Slightly skeptical

Participants in both calls were lukewarm about Crowley’s message. While praising his openness, some were concerned with his extended timeline and lack of progress.

“I’m not 100 percent satisfied with the strategy being put out next year. I want to see a strategy put in place before next year so it can be implemented,” said Marsha Jones, secretary of C2EA.

FAPP Co-Chair Will Smith said he was worried that community input might not be adequate.

“The process may not sufficiently bring the HIV community in,” Smith said. “We don’t know if these ten townhall style meetings will provide input into what a National AIDS Strategy looks like.”

Crowley said that federal law prohibits him from convening advisory panels, which is why he can’t have formal community input, as he would like. And although he was “reluctant” to talk about it, he said that the Presidential Advisory Council on HIV/AIDS (PACHA) will be reevaluated when the charter expires next month.

“It’s an opportunity to take a fresh step forward,” Crowley said.

Advocates have been calling for a National AIDS Strategy for years and momentum reached a peak in the months leading up to the election in November. Obama recently said he supports a National AIDS Strategy in a radio interview with Bev Smith on National HIV Testing Day last month.

‘Same old story

Crowley is also “far along in the process” of hiring five staffers and said that members of the staff will be HIV-positive.

“I’ve made a commitment for people with HIV on my staff and to have racial and gender diversity,” Crowley said in the call with C2EA. But he noted it would be “discriminatory on many levels” to designate a position just for a person of a specific race, gender or HIV-status. “But we can’t just rely on staff members. That’s why I’m committed to getting a process in place where we can get as much input as possible.”

Crowley has made a point of being accessible, even giving out his e-mail address to participants. Many advocates on the call had spoken to him before and already heard much of what he had to say.

“That’s the job of government, to repeat your message over and over until people hear it. I’m just looking forward to when that message is updated,” said SisterLove executive director Dazon Dixon Diallo.

One message that has yet to be updated is lifting the ban on syringe exchange funding. While Obama has stated his support for lifting the ban, he has yet to exert any public pressure on Congress to do so. Crowley suggested that advocates need to up their lobbying, enlisting the faith and law enforcement communities in their efforts.

“Jeff ignores the fact that the White House has lobbied Congress on countless issues,” said Housing Works President and CEO Charles King, whose recent speech criticized the Obama administration. “Obama needs to take a public stand to show he is committed to lifting the ban on syringe exchange.”

More money, still more problems

Tue, 07 Jul 2009 17:33:00

Before the State Senate madness, Governor Paterson ushered in the first increase in public assistance in 19 years. The change, which took effect July 1, will increase the basic public assistance grant by 10 percent for the next three years. While every dollar makes a difference, for 11,000 poor people living with AIDS, true relief won’t come until the state eliminates the unfair rent burden that they have to pay.

“I’m holding on by my fingernails,” said James Lister, a New York City AIDS Housing Network member and one of those 11,000 New Yorkers. Lister was diagnosed with HIV in 1989 and went on disability “kicking and screaming” in 2003. He now pays 74 percent of his social security income to live in the rent-stabilized apartment that he’s lived in for 30 years.

“I wear dead people’s clothing and collect bottles and cans to have money to buy indispensable necessities that I can no longer afford on $11 a day, saving up for what is absolutely necessary, like foul-weather shoes and new jeans for the winter weather months, or a light bulb or bath soap,” Lister said. “If I only had to pay 30 percent of my income towards rent it would be a life change.”

New Yorkers living with HIV/AIDS are the only poor people in the state whose rental assistance is not capped at 30 percent of their incomes because their benefits come from the New York City and State (all federal benefits are capped at the thirty percent rate. People who receive Housing Opportunities for Persons with AIDS (HOPWA) and Section 8 housing are required by federal law to have a 30 percent rent cap.

So, thanks to the public assistance increase, HIV/AIDS Services Administration (HASA) clients in independent living will now be able to keep $344 per month of their monthly government benefits—instead of $330 per month. An increase for sure, but not nearly enough for someone like Lister.

11,000 poor HIV-positive tenants housed through HASA pay an average of 50 to 60 percent of their public assistance benefits towards rent.

Why has 30 percent rent cap legislation stalled?

Legislation that would implement a 30 percent rent cap for HASA clients was introduced into the state Senate and Assembly four years ago . The legislation (S02664 and A02565) passed three years in a row through the Assembly Social Services committee and through the Senate social services committee for the first time this year.

Before the Senate quagmire opened up, the city’s Human Resources Administration and the state Office of Temporary and Disability Assistance created an analysis claiming that only 72 HASA clients are evicted per year and that the 30 percent rent cap bill would cost the City and State $28 million.

This analysis sharply contradicts an in-depth analysis by Ginny Shubert at Shubert Botein Associates, which shows a cost savings of $19 million. Shubert Botein Associates, as well as Sen. Tom Duane, has questioned the state’s analysis.

Shubert Botein’s questioning of the analysis reads, “Perhaps the most cynical error in the OMB cost analysis is the report of only 72 ‘HASA client evictions’ annually. As HASA representatives explained in a recent NYS Senate Social Services Committee meeting, this figure includes only those evictions that go all the way through the process and involve the sheriff physically removing a resident. HASA has acknowledged that this count includes only a very small fraction of actual evictions of HASA clients. The number of such ‘literal’ evictions is meaningless as a measure of the housing crises experienced by HASA clients.”

Once the Senate is back in session, advocates will be forcefully pushing for this legislation. For Lister, that won’t come soon enough.

“If these bills were to pass, it would mean I could stop wearing dead-people’s clothes, stop collecting bottles and cans, and I could restore my dignity,” he said.

Travel ban on the way out

Wed, 01 Jul 2009 15:18:00

Thanks in part to insistent pressure from AIDS advocates over the last six weeks, the Obama administration has finally taken meaningful steps toward lifting the hated two-decades-old ban on travel and immigration to the U.S. by HIV-positive individuals.

Comments are now requested, and are needed to address the regulation fully—including the fact that Health and Human Services “welcomes public comment” on the costs and benefits of mandatory HIV testing for immigrants.

After delays, confusion and years of waiting, on Tuesday, the Office of Management and Budget (OMB) released a proposed regulation that would overturn the ban. The agency rescinded it briefly after realizing that the Department of Health and Human Services had sent them the wrong version (oops!). Politico reported the original version calculated the cost and estimated new infections for 20 years, as opposed to five in the corrected proposal officially published in the federal registry today.

Not so fast

Although the regulation seeks to fully overturn the ban, it includes some troubling assumptions that will need to be countered in public comments.

The regulation makes a “tentative conclusion” that “this change may be economically significant” even though countries that don’t have an HIV immigration ban (almost every country in the world) report very few non-citizens relying on government medical care.
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The regulation also leaves the door open for mandatory HIV testing of immigrants by stating, “Although the approach of removing HIV from the definition of communicable disease of public health significance but maintaining the mandatory testing component of the medical examination was not selected for this proposal, HHS/CDC welcomes public comment on the advantages and disadvantages of this or alternative approaches, such as (non-mandatory) testing ( i.e.,opt out/opt in approach).”

There will be 45 days to comment on the regulation and ensure that this ban is finally overturned, so advocates will definitely take HHS/CDC up on its offer, and debunk their inaccurate assumptions.

Although the AIDS community has been advocating against the travel ban for years, it didn’t appear to be on the Obama administration’s pressing priority list. The ban became an embarrassment, however, after a group of Canadian citizens were denied entry to the United States to attend the North American Housing and HIV/AIDS Research Summit, resulting in Andrew Sullivan airing the issue on Anderson Cooper 360. This was followed by the International AIDS Society condemning the ban and stating its desire to hold the 2012 International AIDS Conference in Washington, D.C.

The week of the Canadian kerfuffle, a group of activists were suddenly invited to a meeting with the OMB, Centers for Disease Control and AIDS czar Jeffrey Crowley regarding the lifting of the ban. Now the OMB has released its proposal and even cut the comment period from 60 days to 45 days. That’s change—and expediency—we can believe in.

Keeping the OMB on track

Once the regulation is officially published, advocates will have 45 days for comment. The CDC will develop responses to the comments; a final regulation will be drafted and submitted to OMB for up to 90 days for a second review, before publishing the final review.

The new reg is certainly the beginning of the end of a long national nightmare of the travel and immigration ban. A 1993 law preventing HIV-positive people from entering the U.S. was repealed in July 2008 by Congress and President Bush as part of the President’s Emergency Plan for AIDS Relief (PEPFAR). But for the entry ban to be fully repealed the regulatory change that HHS will propose must also be made.

The OMB suggests that like-minded individuals submit short, identical comments to reduce the amount of time HHS needs to review and comment on letters.

We’ll keep you posted when it’s drafted so you can start commenting away, and make sure the ban is lifted once and for all!

photo credit: http://www.flickr.com/photos/mmewuji/297723538/

Obama’s ugly AIDS truth

Wed, 01 Jul 2009 11:23:02

Housing Works President and CEO Charles King provoked the crowd in a speech at the Philadelphia FIGHT 10th Annual Prevention and Outreach Summit last week when he called out President Barack Obama for his failure to lead the fight against HIV/AIDS or advance the cause of other progressive issues.

“I like Obama. I really do. I’m just here to tell you when it comes to AIDS or any other progressive cause you might care about, Barack Obama is not the change you all have been looking for,” King said in the speech to a crowd of 650 advocates, people living with AIDS and community members.

His remarks were met with both a standing ovation from half of the audience (and props from the conference organizers) but also scattered hisses and boos. A few people left mid-speech.

“I was aware during the speech that I was making some people uncomfortable, but they were pretty much drowned out by the applause and ovation at the end,” King said.

“I thought Charles’ speech was great and that he told the truth about Obama’s lack of response to the AIDS epidemic, and a lot of issues the Obama administration has ignored,” said Jose de Marco, a member of ACT UP Philadelphia who attended the conference. de Marco said that the audience was divided in its response to the speech. “A lot of audience members were people of color and they didn’t like hearing the truth and hearing it from a white person,” de Marco said. “Some people felt like, ‘He’s saying our Black president is screwing up on AIDS.’ “

Rev. Dr. Ernest McNear, Pastor True Gospel Tabernacle Church of God in Christ, disagreed with that criticism and said “I never looked at it as a white guy talking about Barack Obama. I looked at the director of an AIDS group making the case for the needs for the AIDS community now. The urgency was there. He certainly did challenge this administration, but also was able to speak positively of the administration in spite of the criticisms.”

McNear said he requested a copy of the speech and will be adapting it to use in his work.

Obama’s disappointments

In the speech, King decried the Obama administration’s lack of progress on creating a National AIDS Strategy; lifting the HIV travel ban; lifting the ban on federal funding for syringe exchange; and for cutting funding for global AIDS and housing.

At a meeting with National Director of AIDS Policy Jeff Crowley and other members of the administration last month, when AIDS activists questioned why Obama couldn’t issue an executive order lifting the HIV travel ban they were told “This Administration stands for two things. Change, of course, and the rule of law. We don’t circumvent regulations when we don’t like them. We follow the proper procedures to change them.”

In his speech, King said, “Of course, if they don’t like the CEO of General Motors, they don’t need any regulatory authority to fire him. They just shove him out the door as a condition for the bailout. Meanwhile, real people are suffering because of a rule that everyone now agrees is stigmatizing and counter to good public health policy.”

King also criticized the Obama administration for its defense of the Defense of Marriage Act and “Don’t Ask, Don’t Tell,” its treatment of political prisoners and the Obama administration’s hypocrisy surrounding choosing what issues to fast track.

“Not only is Obama not proving progressive on AIDS, but in some regards we are moving backwards in this Administration,” King said, saying at one point “150 days into this administration, it is amply clear that Obama is in fact governing as a moderately conservative Democrat, much in the strain of his predecessor, Bill Clinton.”

Read King’s full speech.

Youth take to the streets

Wed, 01 Jul 2009 10:57:01

When San Francisco’s Iris Center Executive Director Angela Green spoke to participants at the Youth Action Institute (YAI) last Tuesday about the impact of California’s budget cuts on her organization, she didn’t expect much more than sympathy. But then Kimberly Jefferson of Hampton, Virginia, said, “We’re here for three days. What can we do to help?”

After consulting with Green, Jefferson and 23 other burgeoning youth activists from as far as China and Australia got to work planning a demonstration outside Iris Center, which provides lifesaving services to women with HIV in San Francisco’s Castro and Mission district. Galvanized by Green’s sense of urgency, the group rearranged the YAI schedule in order to spend three days seeking media coverage, creating messaging and organizing a demonstration outside of Iris Center’s facilities. At the demo, participants passed out fliers that read, “We can’t allow people to die alone” and held up signs that read “Honk against AIDS cuts” to publicize the $175,000 in cuts to Iris Center’s budget.

“I see a growing demographic of African-American women who are infected and then California is cutting these services,” Jefferson said.

Because of California’s horrible budget crisis, it has planned to eliminate more than $160 million in HIV services as part of more than $5.5 billion in tentative new cuts to health and human services.This would gut the state’s Ryan White AIDS Drug Assistance Program (ADAP) and eliminate services such as HIV counseling and testing, early intervention programs, and home and community-based care programs. California AIDS activists held a mass demonstration in Sacramento on June 10.

Youth-run and adult supported

The YAI demonstration Friday was the first time some of the participants had ever participated in an activist event.

“The night before the rally we went to the same place and did outreach, and I was really uncomfortable passing out fliers and such. But during the rally I was lying on the sidewalk in protest,” said Summer Sterling, 21, of Silver Spring, Maryland. “I wasn’t thinking twice about how I looked.”

Organized by the Campaign to End AIDS (C2EA), the Youth Action Institute was held at the UC-Berkeley campus over five days. The purpose of YAI is for young AIDS activists between the ages of 16 and 24 and many living with HIV to learn from each other and more experienced AIDS activists and take that information back to their home towns and engage in an on-the-ground AIDS advocacy project.

“The culture and diversity really made the experience unique. A lot of times we speculate as to what demographic HIV/AIDS affects, even those of us who are affected,” said Jefferson, 25, who has followed in the footsteps of her activist father Greg Fordham. Fordham is the HIV-positive founder of C2EA’s Virginia chapter.

In addition to hearing presentations from advocates in the Bay Area, as well as participating in sessions led by Housing Works President and CEO Charles King and Health GAP grassroots organizer Kaytee Riek, the YAIers ran many of the sessions themselves.

“YAI was youth-run and adult-supported,” said Anthony Roberts of Miami. “We were hearing from experts, but the group brought experience and expertise.”

Some youth participants had experience with street outreach. Others were bilingual. Roberts, 24, was a marketing/communications major at Johnson & Wales, and he used his knowledge to teach the group about gaining media coverage—skills that paid off when Friday’s rally garnered press coverage in the California Chronicle. He is working on designing a social marketing and media campaign in Miami for his YAI project.

This year’s YAI was the first that truly used social networking and communication to advance its message. Carrie Rheingans, 27, a participant from last year’s YAI and one of the event’s organizers, taught a session about online organizing and posted on twitter throughout the conference. The group also started a blog, youthactioninstitute.wordpress.com:“http://youthactioninstitute.wordpress.com/” where they will report on their projects.

The participants continue to stay connected (via Facebook of course), and have committed to staying involved with the Campaign to End AIDS.

After hitting up the Bay Area, this year’s participants are considering holding next year’s YAI in Shreveport, Louisiana, and hold a public outreach campaign during the annual Crawfish Festival next June.

YAI participant Justin Coleman, 21, who’s from Shreveport, said, “There’s not much activism here around HIV and AIDS. It would be a good thing to open up everyone’s eyes.”

TransJustice now!

Wed, 01 Jul 2009 06:07:01

Just in time for the 40th anniversary of the Stonewall riots, nearly 1,000 transgender people and allies gathered, rallied and marched at the fifth-annual Transgender Day of Action on Friday.

The approximately 900-person strong group started in Union Square and took to the streets demanding an end to violence and discrimination towards transgender and gender-nonconforming people.

They then marched to the Human Resources Administration (HRA) to demand that the city agency adopt a policy to prevent discrimination against transgender people seeking and utilizing public assistance, which is yet to be in place despite five long years of negotiations.

The Transgender Day of Action was organized by TransJustice, which is run by the Audre Lorde Project.

What do we want? Trans justice!

Although the weather was sunny, many of the participants carried yellow umbrellas with black writing, calling on HRA to implement a new procedure to prevent transphobic discrimination for people who receive public assistance. HRA is working with a number of organizations, including TransJustice, Queers for Economic Justice and Housing Works, to implement these changes. TransJustice organizers expected the changes to be implemented by last week and marched to the HRA Waverly Center to voice their disappointment that the changes haven’t happened.

When the marchers converged at HRA, protesters screamed “What do we want? Trans justice! When do we want it? Now!”

In addition to fighting the HRA policy, the Transgender Day of Action participants rallied against police brutality, discrimination and a host of other concerns.

Many participants said they appreciated the demonstration as a way to fight back against marginalization in their day-to-day lives.

“I get hissed at every day for being a transsexual female,” said Angela Therien, a member of Housing Works’ Transgender Evening Program who attended the march. “People are ignorant and insult me without knowing what I feel like.”

GENDA Update

One issue not discussed at the protest was the Gender Expression Nondiscrimination Act (GENDA). Although organizers endorsed “equal access to employment and education opportunities,” the Audre Lorde Project and the Sylvia Rivera Law Project don’t endorse GENDA because of a provision in the legislation that extends hate crime legislation to transgender people. These organizations believe that hate crime legislation is a tool in the “prison industrial complex” that can actually be used against transgender people.

All protected classes that are added to the New York Human Rights law automatically are included in the law protecting them as victims of hate crimes. Housing Works and other organizations that endorse GENDA believe that the hate crimes statute is a separate issue, and should not stand in the way of GENDA’s passage, which would bar bias on the basis of of gender identity and expression.

Sen. Tom Duane said that he had planned to introduce GENDA to the Senate floor for a vote right before the Senate coup, telling the Update this week that GENDA’s passage is “high, high up, and one of my uppermost priorities.”

But with the New York State Senate out of commission, advocates who have pushed for GENDA are skeptical of its passage.

“I just don’t think it’s going to happen,” said Tracy Bumpus, a transgender activist and Housing Works case manager. “I want it to though. I’m tired of fighting for this every year.”

House Health Care Bill Gets Props

Thu, 25 Jun 2009 12:12:00

AIDS advocates were pleased to see that House’s health care reform draft bill introduced last week has a number of important provisions that benefit poor people living with HIV/AIDS. Most notably, the bill would expand Medicaid eligibility for people with HIV who are not yet sick by including the Early Treatment for HIV Act (ETHA) in the proposal.

The inclusion of ETHA in health care reform would allow states to amend their Medicaid laws to include people with HIV, who in many states don’t qualify for Medicaid because they aren’t considered “sick.”

“This is exactly the type of common-sense measure we need to include as we craft comprehensive health reform legislation,” ETHA’s House sponsor Rep. Eliot Engel (D-NY) said in a statement. “Treating patients with HIV before the disease progresses to full-blown AIDS is not only more cost-effective for our health care system, but more importantly, it will also save lives while preserving the quality of life for thousands of persons living with HIV.”

ETHA was not included in any of the Senate versions of the bill, so advocates will still have to push hard for the language to make it into the final legislation. But an additional plus is that the Obama administration has unequivocally stated its support for ETHA.

In a hearing with of the House Energy and Commerce Committee Wednesday, Engel asked Health and Human Services (HHS) Secretary Kathleen Sebelius if the Obama Administration supports the Early Treatment for HIV Act (ETHA), and if the provision is passed, would she work with the states to ensure they enact it. Sebelius responded, “Yes.”

Other good news

And thanks to the hard work of AIDS advocates, the House bill also includes many other notable improvements from the current health care system for people with HIV. The plan includes a public health insurance option (though it is unknown what such a plan would look like), and also increases Medicaid eligibility to incomes below 133 percent of the federal poverty line.

Another great fix would close a loophole in the Medicare Part D legislation. People on Medicare Part D prescription drug benefits reach the dreaded “donut hole” when the cost of their meds exceeds $2,510. They can’t receive Medicare Part D benefits until they pay a $4,050 out of pocket, referred to as “true out of pocket costs” or TrOOP. ADAP as TrOOP would allow the joint state-federal AIDS Drugs Assistance Programs (ADAP) to pay the $4,050.

What happens next?

But the House bill is just that, a bill, and it is unclear how well it will fare when the Congressional Budget Office (CBO) analysis takes place. “I rate the chances of the House bill surviving as better than 50/50,” said William Arnold, Title II Community AIDS Action Network CEO.

And Treatment Access Expansion Project Executive Director Robert Greenwald said, “This is not the time to rest on our laurels.”

“The House bill has a lot of things in it. I’m not convinced that the CBO score is very high. Now is the time we push hard and make sure these improvements are included in the final legislation,” Greenwald said.

Whatever plan is made, of course, probably won’t be ideal. A single-payer health care plan is the best, and what Housing Works, as well as many other AIDS advocates, have pushed for. But this option doesn’t look to be in the cards.

“We’ve been ratcheting down our expectations from a single payer plan,” said Ernest Hopkins, federal affairs director of San Francisco AIDS Foundation. “But getting something in place and then incrementally improving it has been a way of achieving specific advancements. I’m very optimistic we’ll have reform by the middle of October. That’s much better than we have now. That covers thousands of more people with HIV, categorical eligibility will go away, and we’ll have a public insurance option of some form.”

People with AIDS in the United States are poorer than the general population and also more likely to lack adequate health care. Forty-five percent of people with HIV/AIDS in the United States have incomes under $10,000 a year, and 50 percent lack regular medical coverage.

What about Ryan White?

In the long term, changes to health care would hopefully mean that the Ryan White CARE Act could be used to fund support services and be the “payer of last resort” as it’s intended to be. If more people are eligible for Medicaid, there will be less need for the AIDS Drug Assistance Program.

“We won’t see any actual change on the ground until two to three years out when we’ll see if ADAP is spending its money,” Arnold said. “In the short term, Ohio’s about the go belly up. 150 people on ADAP waiting lists. Arizona’s cutting eligibility. Who knows how all these things will play out at the local level?”

The Ryan White CARE Act is set to sunset in September 2009, and most AIDS advocates are calling for at least three-year extension of the program with some technical fixes until health care reform is better sorted out. Those fixes would include allowing provisions of food pursuant to a doctor’s prescription of nutrition as a core medical service; medical transportation as a core medical service; and helping stabilize State ADAPs Programs by ensuring that rebate income may be spent after federal funds are dispersed. See the full documents.

The majority of the Senate Health committee supports the fixes made by the majority of AIDS advocates.

Housing Works and Campaign to End AIDS offered the minority view that change is needed sooner.

Most AIDS groups oppose Senator Enzi’s (R-WY) amendment to the Affordable Health Choices Act bill (Health Care Reform) now under consideration by the Senate Health Committee that would extend Ryan White for five years without any fixes.

PWAs, Pull Up a Chair

Thu, 25 Jun 2009 09:56:00

The feds say that a New York City Ryan White Planning Council resolution passed last week doesn’t violate any federal rules, paving the way for a groundbreaking new policy mandating that some AIDS Service Organizations that receive Ryan White funding include HIV-positive clients on their boards of directors.

The Council voted 20 to 2 that non-profit organizations receiving Ryan White Part A funds that primarily serve HIV-positive clients must have a consumer (someone who uses the organizations’ services) sit on their boards of directors. The members of the New York City Department of Health (DOH) who sit on the Planning Council cautioned last Thursday that the resolution might be nonbinding because of Human Resources and Services Administration (HRSA) policies. However, HRSA’s said otherwise.

“There are no HRSA rules that either allow or prohibit the Council from making rules that influence the make-up of boards of organizations receiving Ryan White Part A funds,” said HRSA spokesperson David Bowman.

A spokesperson from the DOH said it is consulting with its legal department because the resolution “has numerous implications that need to be explored.”

Last Thursday, the Planning Council voted 20 to 2 “that all non-profit organizations receiving Ryan White Part A funds shall be required to include no less than one (1) HIV-positive consumer, who is willing to be known as such to the public, and who has been elected by other consumers of that organization to its board of directors, except in the case of grant recipients not directly serving primarily HIV-positive clients, in which case the consumer representative(s) may be elected to that organization’s existing board of directors, advisory board or other appropriate body.”

DOH, as the feds’ grantee, is required to carry out the Council’s resolutions. If the DOH doesn’t comply with Council resolutions, the Council can refuse to pass motions that the grantee needs to operate, fail the grantee in its yearly assessment or call for HRSA intervention.

But hopefully it won’t come to this. Asking organizations receiving city funding to alter personnel and hiring practices is nothing new.

“I’m outraged that the DOH has any doubts about carrying forward this resolution,” said Housing Works President and CEO Charles King. “The Planning Council resolution is no different than San Francisco requiring organizations to amend their personnel policies to requiring city contractors to provide domestic partner insurance coverage.” Housing Works supports the Council’s resolution.

Denver Principles in action

This resolution was an outgrowth of the PWA-empowerment-focused Denver Principles Project, which most New York AIDS service organizations have endorsed. At the Planning Council meeting, speakers accused these groups of hypocrisy for endorsing PWA involvement without having a board member who is HIV-positive.

Although this resolution will affect many nonprofit organizations receiving Ryan White Part A funds, the resolution was of particular interest to members of the Gay Men’s Health Crisis Client Advisory Board (CAB), which has been calling on GMHC to have a seat on their board of directors for the past two years.

“I suspect we’ll get some pushback from the leadership at GMHC. If we have to, we’ll pursue legal action,” said Joseph Sellman, a member of GMHC’s CAB.

GMHC didn’t respond to the Update’s request for comment by deadline.

Sound the Alarm!

Wed, 24 Jun 2009 16:00:00

President Barack Obama has been a big disappointment on the AIDS front so far.

His 2010 budget cuts funding to fight AIDS globally, cuts funding for federal AIDS housing, and fails to lift the federal ban on syringe exchange. Now it’s up to Congress to push back against Obama’s cuts. Starting next week AIDS activists around the country are going to Sound the Alarm during the National Week to Fight AIDS by targeting members of Congress to make changes to Obama’s misguided budget.

“President Obama’s budget is not what we have hoped for. Congress has the ability to go in to increase funding for additional programs and now is the time to be targeting them,” said Health GAP grassroots organizer Kaytee Riek

From June 30 to July 7 there will be actions across the country aimed at key members of Congress who control the nation’s purse strings. There will be a march to Rep. Obey’s office in Wisconsin; activists are targeting him because he is chair of the House Appropriations Committee, which has the power to lift the federal ban on syringe exchange. There will also be a march from Sen. Arlen Specter’s office in Pennsylvania to Sen. Frank Lautenberg’s office in New Jersey. Both are members of the Senate appropriations committee.

On July 7, everyone is encouraged to call Speaker Nancy Pelosi to demand that she “work with the Appropriations Committee to improve President Obama’s budget and secure sufficient funding for AIDS programs in the US and around the world.”

People who live in 13 states (California, Hawaii, Illinois, Iowa, Maine, Maryland, New Jersey, Ohio, Pennsylvania, Rhode Island, Vermont, Washington, and Wisconsin) have a special responsibility to speak up! In these states, a Senator sits on an especially important Subcommittee of the Appropriations Committee, which decides funding for all programs in the U.S. It’s up to that committee to fix the three major issues in the Obama budget. See how to contact these senators

Change that’s time has come

In Obama’s proposed budget, AIDS housing does not even keep pace with inflation or meet its anticipated demand for the year, let alone develop desperately needed new housing, even as new infections continue to rise. Congress needs to increase the Housing Opportunities for Persons With AIDS (HOPWA)‘s budget by the $50 million dollars, to $360 million.

Wealthy countries have not kept their promises to increase funding for the Global Fund to Fight AIDS, TB, and Malaria, which is facing a $5 billion funding shortfall and is cancelling entire rounds of funding and cutting existing grants.

On the campaign trail, Obama heralded the Fund as a key investment. But his 2010 budget did not request any new money for the Global Fund.

Congress needs to increase funding for the Global Fund to the U.S.’ fair share—$2.7 billion—to avoid cuts to grants.

As recently as this winter, President Obama has said that he is strongly in favor of lifting the current ban on using federal funds for syringe exchanges. But he failed to remove the ban from the appropriations bill, citing that this is not the right time and place. But there is no other way to lift the ban besides removing the language banning federal funding. And if we do not do it now, that means millions more HIV infections this year. As the administration tells us, every 9 and 1/2 minutes there’s a new infection in the United States.

Sound the Alarm is sponsored by ACT-UP Philadelphia, African Services Committee, America Medical Students Association, Artists for A New South Africa, Community HIV/AIDS Mobilization Project, Global Action for Children, Housing Works , New York City AIDS Housing Network and Proyecto Sol Philadelphia. But anyone can get involved! For more information about how to get involved contact soundthealarm.july7@gmail.com or go to sound-the-alarm.org

Happy HIV Testing Day

Wed, 24 Jun 2009 15:43:00

Tomorrow is National HIV Testing Day, an important reminder that HIV testing is the first step to linking people with lifesaving care, as well as an opportunity to provide counseling for people who test both HIV-positive and negative. This occasion should also serve as a reminder that HIV testing laws should maintain true written informed consent and counseling.

There are currently four bills floating around Albany that would change Article 27-f HIV rules regarding counseling and testing. And while the chance of any of these bills being passed in Albany this session is incredibly unlikely, today is as good a day as any to remember the principles Housing Works recommends for any HIV testing legislation. Twenty-five organizations have endorsed the principles, including the New York Civil Liberties Union, Lambda Legal, Legal Action Center and Bronx AIDS Services:

• Our goal is not testing for testing’s sake. Getting more people tested should not be an end in itself, but rather, a way to reduce the overall number of cases of HIV transmission to connect HIV-infected people with lifesaving care;

• Streamlining the HIV testing process does not require eliminating the protections that informed consent provides, and this is consistent with CDC recommendations;

• Expanding access to testing for all New Yorkers can be done by making HIV-related testing a routine part of primary care;

• It is critical that people freely choose to be tested for HIV and provide informed consent in writing prior to the test to indicate that testing is being done voluntarily;

• Informed consent means that people affirmatively choose whether or not to be tested for HIV, not that they are given the option to decline to be tested;

• People should be fully informed about the availability of anonymous testing, who will have access to the results of the test, how those results can be used and what legal protections exist to vindicate any resulting discrimination before they choose to be tested

• Existing confidentiality protections that do not operate as a barrier to testing must be retained.

Now, with those simple guidelines in place, test away!

To get involved in the fight to retain written informed consent in New York State or endorse the above principles, contact terri smith-caronia at smith-caronia@housingworks.org.

Planning Council Approves Resolution to Get Clients on ASO Boards

Thu, 18 Jun 2009 19:06:01

New Yorkers living with HIV who access the services of Ryan White-funded organizations struck a symbolic but powerful blow yesterday, asserting their right to have a hand in the running of the organizations intended to help them.

The New York City Ryan White Planning Council passed a resolution 20 to 2 on Thursday calling on non-profit organizations receiving Ryan White Part A funds that primarily serve HIV-positive clients to have a consumer sit on their Board of Directors. While the Department of Health said that the resolution is nonbinding, it nonetheless is a huge credibility boost to the efforts of a group of clients at Gay Men’s Health Crisis (GMHC) who have pressed the organization for consumer representation for two years.

The DOH members on the Planning Council were the only members to vote against the resolution.

“You have a Planning Council because of people living with AIDS. You have an agency and a job because of people living with AIDS. I need you and you need me,” said Antionettea Etienne, co-chair of the Planning Council Consumer Advisory Group, in her comments to the full Planning Council. The Consumer Advisory Group had approved the groundbreaking resolution the Saturday prior to this week’s meeting.

There was deliberation and lively audience comments. Speaker after speaker called on the Planning Council to remember the Denver Principles. A half-dozen people living with HIV/AIDS spoke in favor of the resolution, including numerous GMHC clients, as well as longtime AIDS activists Housing Works President and CEO Charles King and POZ founder Sean Strub. Most community-based organizations in New York have signed on to the PWA-empowerment-focused Denver Principles project, and speakers accused these groups of hypocrisy for endorsing PWA involvement without having a board member.

“You signed on to the contract of the Denver Principles and you should live it,” said Russell Stevens, a member of GMHC’s client advisory board. “We who are in the trenches know what’s going on. How can someone on the board [who’s not a client] identify with the garbage we go through every day?”

While Housing Works’ bylaws require one-third of its board of directors to be consumers voted on by other clients, most New York community-based organizations that serve people with HIV/AIDS have no such requirements.

“If we really support the Denver Principles, let’s put some real teeth into it,” King said, noting that Housing Works has been enriched by its consumer board membership

Resolution diluted?

The resolution stated “that all non-profit organizations receiving Ryan White Part A funds shall be required to include no less than one (1) HIV-positive consumer, who is willing to be known as such to the public, and who has been elected by other consumers of that organization to its board of directors, except in the case of grant recipients not directly serving primarily HIV-positive clients, in which case the consumer representative(s) may be elected to that organization’s existing board of directors, advisory board or other appropriate body.”

The resolution that passed was amended from the Consumer Advisory Group’s resolution to exempt organizations that don’t primarily serve HIV-positive clients, such as hospitals and any non-AIDS service organization. The original resolution would have required all bodies receiving Part A funding to have an HIV-positive client on its board of directors. Dena Rakower, a Planning Council member and Bellevue Hospital staffer suggested the amendments.

While no Council members objected, the change angered many of those who spoke at public comment.

“This totally dilutes it!” Strub yelled out.

“The hospitals were happy to take Planning Council money when the new case management proposal came up a few months ago, but they don’t want us on their boards?” said Manuel Rivera, a GMHC client who has been pushing for this resolution.

Win for GMHC Consumer Advisory Board members

According to the DOH staffers in attendance, the Planning Council has no authority to dictate who should serve on the boards of organizations receiving Ryan White funding.

But despite what this might mean on a policy level, the GMHC Community Advisory Board (CAB) members who brought forth this resolution were overjoyed that the Planning Council legitimized their concerns. All groups receiving Ryan White funding are required to have a CAB. As governmental co-chair Jan Carl Park said at Thursday’s meeting, “some work well and some don’t.”

GMHC’s CAB has long raised concerns that GMHC doesn’t listen to its recommendations. GMHC has refused to appoint a consumer board member, citing reasons of confidentiality and other concerns.

“This will send a message to GMHC that we mean business,” said Joseph Sellman, a GMHC CAB member, who was smiling ear to ear after the resolution was passed.

City Council Restores Millions in AIDS Funding

Thu, 18 Jun 2009 10:05:00

For months, the Bloomberg Administration has argued that community-based case managers in HIV/AIDS Services Administration (HASA) supportive housing serve the same role as the city’s HASA case workers in the lives of poor New Yorkers living with HIV. But after months of rallies, arrests, action alerts, budget hearings, and meetings between people with AIDS and their advocates, New York City Council Members were persuaded by ample evidence to the contrary. City Council is expected to vote today to restore $3.8 million in funding for community-based case managers in supportive housing.

These assurances were made to advocates by City Council members, although Council has not yet voted on the $15 billion budget deal reached by Bloomberg and Council Speaker Quinn. The budget is expected to pass, although it is based on the presumption that the State Senate will approve a new sales tax in New York City. See the full budget breakdown.

“A lot of [representatives from] supportive housing groups said, ‘The case manager was the person who came to me in the middle of the night, and we cannot keep these buildings going without them,’” said Council Member Gail Brewer, who fought for the restoration of funding. “Everyone on the Council wanted to put it back. I think everybody did really good advocacy.

In addition, the Council also will restore $491,000 to HIV Nutrition Services. This funding provides meals for 3,000 low-income individuals with HIV/AIDS every year, and serves as a gateway for Momentum AIDS Project to educate, counsel and link people to primary health care, mental health and substance abuse treatment, housing and other essential services.

Council members’ discretionary items for AIDS services and harm reduction, which took a huge hit last year have been maintained at last year’s funding levels.

A job well done

Advocates were thrilled that their hard work paid off. New York City AIDS Housing Network Executive Director Sean Barry said, “These cuts were sobering because we’d taken AIDS housing for granted in City Hall. We realized we really had to educate City Council about the importance of supportive housing.”

Matt Lesieur, Village Care of New York’s Director of Public Policy, agreed. “If we had stayed on the sidelines, the cuts were going to happen,” he said.

“Because of our meetings with Council Members, testimony at budget hearings and also remaining faithful on the steps throughout the budget process, it is clear that Council Members heard the advocates’ message: Cuts to supportive housing would have been incredibly detrimental to HASA clients,” said Kristin Goodwin, Housing Works Director of New York Policy and Organizing.

Council Members who emerged as leading supporters of restoring funding included Brewer, Bill deBlasio, Melissa Mark-Viverito, Rosie Mendez, Letitia James, Maria Baez, Robert Jackson, John Liu, Maria del Carmen Arroyo and Annabel Palma.

Now for the bad news…

Despite advocates’ case-management victory, there were was one clear defeat: Bloomberg’s $4 million cut to Scatter Site II (SSII) housing was not restored by City Council.

SSII offers housing to people in SROs as an intermediary step on the road to independent living. While SSII is widely seen as flawed—tenants are often assessed incorrectly and qualify for more substantial services—the cut is bad timing. New York City’s HOPWA funding has also been cut and the number of people with HIV/AIDS living in SROs is on the rise.

Scatter Site II providers place between 700 and 1,000 homeless people a year into supportive housing. Although no one will technically lose housing (HASA has said it will provide housing for all SSII residents), without SSII providers around to offer assistance, the number of people in SROs will almost certainly rise.

“Regardless of how people felt about Scatter Site II, every Scatter Site II had a waiting list,” said Barry. “From here on out there will be hundreds more people with HIV and AIDS in New York City who aren’t in permanent housing.”

The Mayor and City Council will likely call for more cuts after the elections in November. Bloomberg told advocates on the steps of City Hall last month that if they were upset now, “just wait until next year.”

Farewell David Hansell

Wed, 17 Jun 2009 19:34:00

Advocates for low-income New Yorkers were disappointed to learn Office of Temporary and Disability Assistance (OTDA) Commissioner David Hansell is resigning and taking a post in Washington, D.C. as Principal Deputy Assistant for Children and Families in the U.S. Department of Health and Human Services. Hansell was widely viewed as an advocate for poor people.

This year, he oversaw the first increase in New York State’s basic public assistance grant in 19 years. He also joined the effort to save welfare-to-work job training for people with HIV.

“We wish Commissioner Hansell all the best in his new job. He accomplished a number of important things during his tenure,” said Shelley Nortz, deputy executive director for policy at the Coalition for the Homeless. “We thank David for his service and hope his successor will work with us to complete the work left to be done, including the development of a progressive plan to address the deepening problem of homelessness in New York State.”

Housing Works Vice President of New York Advocacy and Organizing terri smith-caronia said, “Throughout all his roles in city and state government, David Hansell valued community input and was an advocate for poor HIV-positive individuals and families here in New York.”

A Dedicated New Yorker

Hansell was appointed to the OTDA post after working as Human Resources Administration chief-of-staff to HIV/AIDS Services Administration (HASA) commissioner Verna Eggleston, where he revamped and modernized HASA centers. A former Gay Men’s Health Crisis staffer, Hansell remained an ally to community organizations, alerting the community to discrepancies in the rental share paid by HASA tenants versus other rental programs.

From 1997 to 2001, Hansell was the Associate Commissioner for HIV Services at the New York City Department of Health and was the government representative for the NYC HIV Prevention Planning Group. He played a crucial role helping the DOH provide funding to combat HIV/AIDS in communities of color.

Hansell was instrumental in the creation of Housing Works’ Stand Up Harlem Houses, which provide housing to homeless or drug-addicted people living with HIV/AIDS in Harlem.

For a variety of reasons, many of them political, the Harlem facility took 17 years to complete. “I’ve followed the tortured history of this project, and it could have been abandoned at so many points,” Hansell told the Update at Stand Up Harlem’s ribbon cutting ceremony in October. “Once we make a commitment to a project, we maintain that commitment. We know there is a very high need in this community.”

Bali White Inspires

Mon, 15 Jun 2009 17:04:01

Bali White is Coordinator of Transgender Services at Housing Works. But she serves as more than just a support to the transgender women in her program—she’s an inspiration.

“I like how the girls are impacted by working with a member of their own community. I’m an example of what you can do,” said White, who is transgender. White was honored by New York City Comptroller Bill Thompson at an LGBT Pride Celebration on Tuesday for her work spearheading Housing Works’ pioneering services for HIV-positive and HIV-negative transgender New Yorkers, a population especially hard hit by AIDS.

Many transgender women believe that sex work is the only option they have to earn money. Bali explodes that myth by her example. “When I realized I was transgender, I thought that if you were trans, you also had to be a prostitute. It was really sold to me together,” White said.

White was able to avoid sex work through a combination of timing, a strong support system, and a commitment to education. But she realizes that, “when most girls get offered that opportunity, they don’t have other options.”

“I’m a square”

Some of White’s clients were initially skeptical of her. “They can sense I’ve never used drugs. I’m a square, as they say,” White said, laughing. “But that doesn’t mean I’ve never been homeless or had to deal with a lot of the struggles that they’ve had.”

A member of White’s transgender evening program, Vivian Lopez Ponce called White an “inspiration.”

“She’s educated, talented and has a fresh outlook on things,” Ponce said. “She’s encouraged me a great deal.” White and Ponce were featured in this widely seen PSA.

White was also instrumental in mobilizing Ponce and other clients to take buses to Albany to fight for the Gender Expression Nondiscrimination Act (GENDA). This bill would make it illegal to discriminate against people on the basis of gender identity or expression, a particularly important issue for transgender people.

“Politics isn’t something that necessarily excites me, but I go on lobby visits in Albany, because I know passing GENDA is incredibly important for transgender people to achieve equality in New York,” White said.

An extraordinary path

White was homeless when she first came to New York in 2000, after attending Howard University for a year. She originally hoped to become a dancer, but hadn’t yet transitioned, and was told she was too feminine to be cast.

She then got a job at Harlem United doing outreach with LGBT communities and started receiving hormones and transitioning from male to female.

White also received her bachelor’s and master’s degrees from Columbia University in 2006 and 2007. She worked for a short time as a phlebotomist and thought about being a biochemist but realized her passion lay in helping other transgender people. She joined Housing Works in 2008.

White is also working to change the narrative around relationships among transgender women whose sexual partners are often ignored, to the detriment of effective HIV outreach. She fought for a program at Housing Works, where partners come in one night a week.

“We’re missing half of the equation,” White said. “There’s this image of transpeople as solitary entities, but a lot of the girls are having sex, and their partners are exposed to the same risks.”

White hopes to expand her work internationally. She brought a priest who works with the transgender community in India to Housing Works and was also interviewed in a forthcoming documentary about LGBT issues in Jamaica.

“A lot of the issues are similar globally, and we can learn a lot from what has been done in other communities,” she said.

Photo credit: Marla Maritzer

Albany Gets Testy

Thu, 11 Jun 2009 18:57:01

Despite the mayhem in the State Senate’s this week, on Wednesday the Assembly held a spirited hearing regarding potential changes to New York State’s HIV testing and counseling legislation. Sponsored by Assemblymember Darryl Towns and the Black, Puerto Rican and Hispanic Caucus, the hearing at times felt like as much like a family squabble as a debate by longtime colleagues—the rhetoric was polite but heated, with discussions of race playing a large part in the discussion.

Important differences emerged over written informed consent and pre- and-post test counseling, with advocates on both sides of the policy divide claiming their positions would benefit blacks and Latinos, who remain disproportionately impacted by the AIDS epidemic.

New York’s Article 27-f requires doctors to supply a one-page form to patients to obtain their consent for an HIV test, and requires doctors to provide patients with pre- and post-test counseling. “The current law is deterring people of color from testing until they have an AIDS-defining illness,” Latino Commission on AIDS Executive Director Dennis deLeon said in his testimony. “This is a racist system.”

Most of the people testifying challenged deLeon’s claims that such requirements were barriers to testing.

“Why is it that we have so many more black men and women getting infected? It has nothing to do with this law,” Tokes Osubu, executive director of Gay Men of African Descent, said in his testimony. “When we offer a test, people take it.”

In a follow-up interview with the Update, Osubu said, “We’re playing the race card here and that’s disgusting.”

And many others challenged the claim that civil liberties no longer played a role in testing. “In the ’80s, when the face of the epidemic was gay white men, we put protections for civil liberties in place. I’m offended that we would want to lose these because this is now a disease of color and poverty,” said Housing Works Director of New York State Advocacy and Organizing terri smith-caronia.

Smith-caronia also took issue with calls to eliminate pre- and post-test counseling. “We’re not talking about a psychotherapy session. It’s a chat.”

Four on the floor?

There are currently four separate testing bills floating around the Legislature that would amend Article 27-f. All of the bills change the law to require the universal offering of HIV tests in doctors’ offices, emergency rooms and elsewhere and contain nuanced differences regarding how the tests are offered.

Latino Commission on AIDS, Harlem United and NBLCA support legislation sponsored by Towns and Sen. Hiram Monsserate (who is currently occupied attempting to take over the Senate) as well as legislation sponsored by Annette Robinson and Shirley Huntley. Both bills would remove written informed consent; the Towns/Monserrate legislation requires HIV tesing in doctors’ offices while the Robinson/Huntley bill only require testing in hospitals and emergency rooms.

Those three community groups strongly oppose a bill sponsored by Sen. Tom Duane and Assembly member Richard Gottfried that maintains written consent but uses an “opt-out” procedure instead of an opt-in procedure (simply put, opt-in means you specifically request the test and opt-out means you specifically ask not to have the test) .

None of the advocates support a bill sponsored by Assemblymember Nettie Mayersohn, which would eliminate written consent and pre- and post-test counseling.

“The Duane/Gottfried bill doesn’t move the fight far enough,” said Harlem United Director of Government Relations Soraya Elcock. The passionate Elcock said in her testimony that history will remember President Barack Obama’s election and the changes to HIV testing laws as the two most important events of 2009.

The Duane/Gottfried legislation is supported by the Legal Action Center, Gay Men’s Health Crisis and the New York Civil Liberties Union, because these groups view written informed consent as an important civil liberty that needs to be protected, and that oral consent is not adequate.

Housing Works doesn’t support any of the proposed legislation, because none of the laws require patients to opt in to testing, the only way to ensure that the process is truly consensual. See Housing Works principles on HIV testing.

What about pharma?

Although the tone of the hearing was largely a fight between often-allies, there was a question as to whether pharmaceutical companies have a hand in this fight. Pharma believes that written consent is a barrier to getting people diagnosed and into treatment.

“When you have pharma coming in and saying the law should be changed, this has nothing to do with what goes on in the doctor’s office,” Osubu said in his testimony.

Although Osubu did not discuss which pharmaceutical companies he was referring to, some advocates wonder if Gilead has put money into the testing fight. Gilead Pharmaceuticals funds Harlem United and a member of Gilead serves on the Harlem United board. Gilead and Harlem United share an Albany lobbyist.

Soraya Elcock of Harlem United emphatically denied any collaboration over 27-f: “Harlem United does not get any money from Gilead or any other pharmaceutical company to move this position. Written consent is a problem we have been working to address for years.”

What’s next?

Because the State Senate remains in flux, it is highly unlikely that any bill will be passed this legislative session, which ends in two weeks. There is still time to attempt to develop community consensus.

“We know there are still some tweaks we can make to it,” Towns told the Update after the hearing. “We are not as far away as it seems.”

In addition to Towns, Assemblymembers Robinson, Barbara Clark and Inez Barron attended the hearing, where more than a dozen AIDS advocates provided testimony.

“I don’t think we’ve ever had a hearing with as many people of color in the room,” Clark said. “No matter what side you’re on, I appreciate that we’re beginning to see the real importance of this issue to our community.”

Tom Duane Speaks!

Thu, 11 Jun 2009 18:39:00

With Albany in flux this week, rumors abounded about the AIDS community’s biggest ally Sen. Tom Duane. On Thursday, Duane spoke to the Update about the question marks surrounding GENDA and the 30 percent rent cap legislation. Duane told the Update that he planned to bring the Gender Expression Nondiscrimination Act (GENDA) to the floor this week, but the “plans got derailed” by the Senate coup.

“I had seen the published vote count and time was running short. I decided to get it on the floor and get it on the vote,” Duane said. “It’s unfortunate my plans were derailed by steps beyond my control. I just don’t know what the future holds.” GENDA would outlaw discrimination on the basis of gender identity and expression statewide.

Duane also said despite conjecturing otherwise, that he’s sticking with the Democrats. “Today I am a Democrat and Malcolm Smith is my leader,” Duane said. “Just because I don’t attend one press conference doesn’t mean I’m leaving the conference.”

Some AIDS advocates said they’ll follow Duane wherever he may go.

“He’s still going to carry our bills,” said New York City AIDS Housing Network member Robert Tolbert. “I support him, no matter his party affiliation.”

Tolbert was on the steps of the Capitol Wednesday promoting one of the other bills sponsored by Duane, the 30 percent rent cap legislation. But this bill (S02664 and A02565) is facing another hurdle, apart from Senate mayhem. The Human Resources Administration and the Office of Temporary and Disability Assistance created a last minute analysis claiming that only 72 HASA clients are evicted per year and that the bill would cost the City and State $28 million.

This analysis sharply contradicts an in-depth analysis by Ginny Shubert at Shubert Botein Associates, which shows a cost savings of $19 million.

The City and State analysis includes numerous errors. For example, HASA’s estimate of the amount of arrears paid every year for HASA clients is nearly 60 percent less than actual rent arrears payments revealed by a FOIL request response in 2008.

The bill was one of the few that passed through the Senate Social Services Committee because an analysis by Shubert Botein Associates showed an actual cost savings to the legislation.

Duane said he will look into the City and State’s analysis but is skeptical of its outcome. “I believe that Ginny Shubert’s analysis is extremely accurate and objective,” Duane said.

What about the City?

And with Albany not working, what will happen to the potential AIDS cuts in New York City? The short answer is they could get worse. If Albany remains paralyzed, the State can’t vote to approve new City sales and business taxes. If this revenue is unavailable, the City will be forced to make further cuts to the budget—which is bad news for AIDS services.

Despite the already heinous cuts to AIDS housing and nutrition, the majority of dollars for HIV services comes from City Council’s discretionary funding, which has yet to be allocated.

Alan Berkman: AIDS Warrior

Thu, 11 Jun 2009 14:53:00

On June 5 the world lost an AIDS warrior—Alan Berkman, a civil rights activist, an AIDS activist, and a pioneer in health service delivery for poor people from South Africa to the South Bronx. Alan passed away after a long, incredibly brave struggle with cancer.

Alan fought against social injustice wherever he found it. Among the many accomplishments in his extraordinary life, Alan was a visionary leader and mentor in the global struggle for HIV treatment access in developing countries.

Ten years ago Alan founded Health GAP. He was outraged that access to lifesaving HIV treatment in sub -Saharan African countries and the rest of the developing world was off the agenda of virtually the entire global AIDS and public health communities.

He was not afraid to call this crisis what it was—medical apartheid, racism, a crime against humanity. He was never afraid to speak out, even when it made powerful people uncomfortable.

His call to action among activists, people with HIV, and health service providers catalyzed successful campaigns to introduce treatment access in poor countries around the world.

Late-night ass-kicker

During the first New York meetings of what would become Health GAP, often running late into the night, Alan kicked us all in our asses. In a typically unvarnished, forceful and compelling way he laid out a simple—but nonetheless revolutionary—vision of access to medicines for all, rich or poor, North or South.

I remember hearing Alan describe how full of disgust he was after attending the Geneva International AIDS Conference in the summer of 1998—where the hypocritical theme “Bridging the Gap” starkly communicated the inattention of the mainstream AIDS scientific and research communities to the AIDS catastrophe happening in the developing world. Unlike others who would have been paralyzed or embittered, Alan instead developed a transformative vision of how to fight to win the bridging of the actual, tremendous gap—the one that, it seemed, no one was talking about.

Recounting those meetings now, what was most extraordinary is that he had the presence of mind and conviction to believe that we could actually win—we could be powerful Davids taking on Goliath after Goliath, through new relationships of global solidarity in activism.

We’d say, “It’s Africa—the media won’t pay attention! The U.S. government will say treatment for all its too expensive! The World Health Organization will say its not cost effective!” And he would shake his head and say, “It doesn’t matter, we can do it, we must do it, because we are on the side of what is right.”

Those ideas were almost heretical only ten years ago. But because of Alan’s abiding commitment and vision, now millions of people have access to life-saving HIV treatment. And just as important, the very concept that expensive, complex health interventions should only be reserved for those in wealthy countries has been shattered forever.

The progress we have made in scaling up HIV treatment coverage is due to the work of countless people around the world. But without Alan’s serene and relentless vision, I can’t imagine it becoming a reality.

The struggle for access for all is far from over—and right now it’s very hard to imagine fighting on without Alan’s presence. But that’s the least we must do to honor his incredible spirit and unflagging commitment to win victories that matter for the health of millions of people around the world.

Asia Russell is Health GAP’s director of International AIDS Policy.

To honor Alan’s memory, donations can be made to the Alan Berkman Fund at Health GAP.

Waiting Game

Thu, 11 Jun 2009 12:20:01

Despite HIV-positive Canadian citizens being barred from traveling to a recent Washington, D.C. conference on AIDS and housing, the U.S. continues to drag its feet regarding the repeal of the travel and immigration ban on people living with HIV. Lifting the ban will probably take six to nine months, according to the timeline the White House Office of Management and Budget (OMB) shared with AIDS advocates at a meeting last Friday.

After up to 60 HIV-positive Canadians were banned from attending the North American Housing and HIV/AIDS Research Summit IV, White House Office of National AIDS Policy Director Jeffrey Crowley and representatives from the OMB and the Centers for Disease Control and Prevention (CDC) met with Canadian and American advocates to brief them on the status of the travel ban.

Health and Human Services submitted a rule change on April 10 to the OMB that would lift the ban. That rule change should be available for public comment by the first week of July. After a 60-day comment period, the CDC can take as much time as it wants to respond to comments and draft a final rule. This process can take several months. Then the OMB will have 90 days to review the process. If CDC has a fast turnaround (which is unlikely), December would be the earliest that a new regulation would be in place.

The Obama administration has refused to issue an executive order lifting the ban, though OMB representatives said at last week’s meeting that they view lifting the ban as one of their top priorities.

“Even recognizing the statutory requirements for review and public comment periods, OMB sees [the process] moving quickly, whereas we see it moving too slowly,” said Joe Amon, Human Rights Watch’s director of Health and Human Rights Division, who attended the OMB meeting.

While the 1993 Congressional law banning HIV-positive travelers and immigrants from entering the U.S. was repealed last year, HHS has not discontinued a separate similar policy put into place in 1987, so the ban is effectively still in place. At the OMB meeting, advocates pushed for a waiver process that doesn’t require disclosure of one’s HIV-status until the travel ban is repealed. The OMB made clear to participants that they were currently focused on lifting the ban permanently, and didn’t view the temporary fix as a solution.

“This delay is completely unexcusable,” said Housing Works President and CEO Charles King, who attended the meeting. “If the Obama administration wanted to fast-track this, they could issue an executive order today.”

AIDSApalooza 2012 in Washington, D.C.?

In the mean time, immigrations and conferences involving foreigners living with HIV must be delayed or postponed. In the wake of the Canadian disaster, the International AIDS Society issued a press release announcing its hope of holding the International AIDS Conference in Washington, D.C. in 2012. In order to plan the conference, the IAS needs a commitment for the ban to be lifted by the end of 2009.

“AIDS 2012 will bring together an estimated 30,000 participants from around the world to address one of the most critical health and development challenges of our generation, highlight the latest results of HIV-related research and foster new streams of collaboration to this global effort,” said IAS President Dr Julio Montaner. “Twenty-five years after the discovery of HIV, the world is finally making progress on rolling back the terrible toll of the global AIDS pandemic. It is time for the U. S. to end the discriminatory ban on entry of foreigners living with HIV.”

On August 16, an action is planned at the Canadian border in Vancouver and Toronto denouncing the travel ban.

The U.S. is among only 14 countries in the world that still ban foreigners from visiting and migrating specifically on the basis of an HIV-positive status. The others are Brunei, Egypt, Iraq, Yemen, Malaysia, Oman, Qatar, Singapore, Sudan, South Korea, Tunisia, Turks & Caicos Islands and the United Arab Emirates.

Restoring Momentum

Thu, 11 Jun 2009 06:17:00

As Mayor Bloomberg and City Council engage in negotiations over a $59.4 billion proposed budget that would go into effect on July 1, the fate of critical services for low-income New Yorkers living with HIV/AIDS hangs in the balance. Part of the Mayor’s proposed budget includes a cut of 50 percent ($491,000) to HIV nutrition services funded through the NYC Human Resources Administration / HASA (HIV/AIDS Services Administration).

The nutrition program cut is targeted exclusively at the Momentum Project, an affiliate of Village Care of New York. The loss of these funds, for which there is no alternative source of revenue, represents a cut of nearly 16 percent of Momentum’s overall budget. If enacted, it would have serious repercussions on the ability of our program to continue functioning at its current level.

We provide congregate meals and pantry service to the hardest-to-reach individuals with HIV/AIDS in a non-judgmental and supportive environment in nine communities in four boroughs. Momentum has a comprehensive team of nurses, nutritionists, social workers, chaplains and other specialists who engage more than 3,000 low-income individuals with HIV/AIDS every year during meals, and educate, counsel and link them to primary health care, mental health and substance abuse treatment, housing and other essential services.

We work with people when they are in crisis; that is, when they are in seriously failing health, are poorly nourished or need to get better quickly but simply don’t know how. Sixty-four percent of Momentum clients have an AIDS diagnosis; 87 percent have incomes of under $10,000; 90 percent are persons of color, and one-third of all clients are homeless or unstably housed.

It is inconceivable that the Mayor would chose to balance the budget by cutting services for the most vulnerable New Yorkers living with HIV/AIDS. The City Council must restore this cut.

We need you to call your City Council member, Speaker Quinn and the Mayor today and say:

“Hello, my name is _________. I am calling to ask you to stop the Mayor’s proposed cut of $491,000 in the fiscal year 2010 budget to HIV nutrition services. Thousands of New Yorkers living with HIV/AIDS rely on food and nutrition services provided through agencies such as the Momentum Project. Please don’t let this cut happen!”

If you have ever received food and nutrition services through an AIDS organization, tell them about your experience and how critical this program was to keep you fed.

Find out who your City Council member is and how to reach them.

Contact Speaker Quinn’s office at (212) 788-6897.

Call the Mayor at 311.

Matt Lesieur is the director of public policy for Village Care. He can be reached at matthewl@vcny.org

Action Alert: Senate Must Vote on Transgender Equality Bill!

Wed, 10 Jun 2009 10:50:00

The New York State Senate has put on quite a show this week, but Housing Works is asking you not to lose sight of important legislation that still has a chance to pass, despite all of the scheming in Albany: The Gender Expression Non-Discrimination Act, or GENDA (A.5710./S. 2406), would protect all New Yorkers from discrimination on the basis of gender identity and expression, an especially important issue for the transgender community, which is disproportionately affected by HIV.

GENDA has already passed in the Assembly and the word in Albany is that there may be enough votes in the Senate to pass it as well (and who knows where one of GENDA’s main champions, Sen. Tom Duane, will end up?).

TODAY, we need you to call Senator Pedro Espada and Majority Leader Dean Skelos (pictured) and urge them to bring GENDA to a vote before the end of this year’s legislative session.

To reach Sen. Espada, call: (518) 455-3395
To reach Sen. Skelos, call: (518) 455-3171

Here is a script you can follow! : “HI, my name is __________ . I am calling to strongly urge Senator Espada (or Majority Leader Skelos) to bring a very important piece of legislation to a vote this week: GENDA S2406. For far too long the civil rights of transgender New Yorkers have been ignored. We hope that the recent changes in Senate leadership and calls for reform will extend to transgender New Yorkers seeking equality and justice in their daily lives. Please show your solidarity with the LGBT community and bring this bill to a vote on the floor before this year’s session ends.”

Thank you for your support of Housing Works’ GENDA lobbying efforts! Interested in GENDA? Read more.

The Science Behind Housing

Fri, 05 Jun 2009 06:27:01

Two groundbreaking studies were presented at the North American Housing and HIV/AIDS Research Summit IV this week in Washington, D.C. A San Francisco Department of Health study showed that stable supportive housing reduced the risk of death among people with AIDS by 80 percent. And final data from the trailblazing Chicago Housing Health Partnership Study study showed people who received supportive housing were almost twice as likely to have an undetectable viral load as those in usual care.

More than 300 researchers, service providers, government officials and people living with HIV from as far away as Haiti and Uganda gathered for the Summit, which is sponsored by the National AIDS Housing Coalition (NAHC) and the Ontario HIV Treatment Network.

In his presentation, Josh Bamberger of the San Francisco Department of Health showed that even a three year old can understand the benefits of housing for people living with AIDS. “Housing is good,” Bamberger said, quoting his own three-year old child. Bamberger’s study, “Impact of housing on the survival of persons with AIDS” examined the health outcomes of people enrolled in San Francisco’s Direct Access to Housing (DAH), which has provided supportive housing for homeless people with chronic medical conditions since 1999, versus those who did not enroll and were homeless.

There were 80 percent less deaths among those enrolled in DAH, which offered intensive case management with a case manager-to-client ratio of 15 to 1.

“This is the first time we’ve been able to see housing’s stark effect on death outcomes,” said Ginny Shubert, a prominent housing researcher with Shubert Botein Associates.

Final data

Results from the Chicago Housing Health Partnership Study (CHHP), the first randomized study showing the impact of health outcomes on people with chronic illnesses, were featured in the Wall Street Journal last year, but the May 2009 issue the Journal of the American Medical Association released CHHP research specifically highlighting the health outcomes of people living with AIDS and final data was presented this week at the Summit.

CHHP showed that after 18 months of being stably housed in supportive housing, 40 percent of participants had an undetectable viral load. Only 21 percent of homeless participants had an undetectable viral load.

Another interesting finding in the CHHP study was the use of nursing homes by the unstably housed people. While the CHHP study didn’t originally track nursing home use, after noticing a pattern, over the course of nine months, this usage was tracked. Unstably housed people spent a total of 4,000 more days in the nursing home than their housed cohorts—costing $2 million.

“Those are expensive, costly days,” said Laura Sadowski, one of the researchers.

Prevention works

Other prominent studies highlighted the need for housing to prevent HIV, as well as the impact of violence among women impacting stable housing. Some highlights:

A Housing and Health study (H & H) showed the cost-effectiveness of housing is dollar amounts—proviing that housing is a cost-effective intervention for improving health, similar to dialysis and mammograms

A Canadian study of HIV-positive women showed stable housing among women at high risk of HIV could allow them to escape violence situations and improve treatment outcomes.

In a study of street involved youth, unstable housing increased the number of sex partners among the youth.

Crowley says

The conference’s featured speaker on Thursday was Office of National AIDS Policy Director Jeff Crowley. Introducing Crowley, Housing Works President and CEO Charles King said that Crowley was a friend of people with AIDS, but “friends speak truth to friends.”

King then criticized the Obama administration for not doing enough to fight AIDS. In addition to not lifting the HIV travel and immigration ban, there is the matter of the syringe exchange funding ban still in place, as well as flat-funding for HOPWA. “I don’t believe four months is a whole lot of time, but we’ve seen when the President wants to make something happen, such as the bank bailout, he’ll make it happen,” King said.

Crowley defended the Obama administration, stating that the President “has a lot on his plate” and “it’s not that anyone sits back and says that AIDS is a low priority.”

Regarding HOPWA’s flat funding, Crowley said, “I was disappointed with HOPWA [but] this is a tight budget environment and we should be realistic about what’s do-able.”

Bailey House President and CEO Gina Quattrochi said that AIDS housing providers have had to “beg, borrow and steal” for funding, and that money needs to be allocated for tracking and researching the most effective programs. “Obama is for data-driven programs, but we don’t have the resources to make that happen,” Quattrochi said.

Crowley pressed AIDS advocates to speak with a unified voice and develop top priorities for a National AIDS Strategy, but also said that he would be traveling the country to hear grassroots opinions about what is needed.

He also said that advocates should continue to push the Obama administration. “Outside pressure can be helpful,” Crowley said. “Sometimes you’ll push the President more than he wants, but he values your input.”

Successive questioners pushed Crowley to be more proactive about including housing in U.S. AIDS policy. Quattrochi pointed out that the press release Crowley brought to the conference didn’t mention housing. “All we’ve experienced is the loss of Ryan White funding,” she said. “We need to think about housing in HIV policy.”

Ban Thy Neighbor

Fri, 05 Jun 2009 05:25:01

The North American Housing and HIV/AIDS Research Summit’s cross-border collaboration hit an outrageous bureaucratic snag this week when 60 Canadian participants were effectively barred from attending the conference. The U.S. Department of Health and Human Services (HHS) failed to grant a waiver exempting attendees from the U.S.’s embarrassing HIV travel and immigration ban.

Most members of the delegation chose to ignore the ban and came to the Summit anyway. Some did skip the conference over worries of getting detained at the border.

While the 1993 Congressional law banning HIV-positive travelers and immigrants from entering the U.S. was repealed last year, HHS has not discontinued a separate policy put into place in 1987 that effectively renders the Congressional repeal meaningless. Advocates are hopeful the policy will be repealed in the coming months.

Speaking at the Summit on Thursday, Office of National AIDS Policy Director Jeffrey Crowley said that President Obama had asked HHS to get rid of the travel ban and that the Office of Management and Budget was currently evaluating an HHS proposal to do so.

“I am truly sorry for how the issue was resolved,” Crowley said during his keynote at the Summit Thursday.

One Vancouver resident who chose to attend the meeting despite the ban felt that the U.S. needed to move with more urgency. “I respect this administration but someone has dropped the ball and that pisses me off. We have to solve problems in the Middle East,” said the man, in reference to Obama’s trip to Egypt this week. “But we have problems here, too.” The man, who works at a Vancouver AIDS group, said that he travels with 11 medications and could easily have been turned back at the border should a customs official have decided to open his bags.

The research summit was somewhat diminished by the loss of a number of members of the Canadian delegation.“Some of these people are on the front lines and wanted to learn best practices, and other conference participants are missing learning about their experiences,” said Ontario HIV Treatment Network Executive Director Sean Rourke.

Don’t blame Canada, blame the U.S.

In March, HHS officials indicated that granting a “designated event HIV waiver” for the Housing Summit was underway. Such waivers are designed to allow people living with HIV to attend conferences in the U.S. and other conference participants received such waivers, including a participant from Haiti. Most of the 60 participants were part of the delegation from the Ontario HIV Treatment Network (OHTN), a cosponsor of the conference.

But on Friday, May 22, 11 days before the summit start date, the Ottawa Embassy informed the OHTN that each of the people in its delegation to the Washington, D.C. AIDS Housing Summit would have to comply with a humiliating, expensive and time-consuming visa process.

Last Sunday, the White House told conference organizers that the Department of Homeland Security issued a blanket waiver authorization allowing travelers to avoid a consular visit and obtain waivers at the point of entry. They still needed to disclose their HIV positive status on a form, and pay a fee of about $545.

Individuals could also opt to visit the consulate and pay a $131 fee; sign an agreement not to extend the visit for any reason; complete an intrusive and humiliating health form, and pledge to possessing adequate health coverage—something many U.S. citizens living with HIV/AIDS are still denied.

Crowley told conference organizers that “as much as I’d like to” waive the fees, federal law specifically prohibits it.

For Jay Koornstra, a HIV-positive man who lives in Ottawa, this was not an option. “I’d just as soon go to the U.S. government and share my HIV-status. Then I would put a tattoo reading ‘HIV-positive’ on my forehead,” Koornstra said.

American shame

The Housing conference incident served as a powerful remidner that the travel and immigration ban is still very much on the books and enforced despite the Bush administration’s anemic attempts to address it.

While the Bush administration indicated to advocates that it wanted to lift the ban, it didn’t get its act together before leaving office.

“The timing in the change of administrations was unfortunate,” said Immigration Equality Legal Director Victoria Neillson.

And the Obama administration got a slow start with HHS, with Secretary Kathleen Sebelius’ confirmation just last month. At the hearing Sen. John Kerry, who introduced the legislation that lifted the Congressional ban, asked about the regulation, saying “When you are confirmed would you make this issue a priority and follow-up on the delay in promulgating a regulation? I hope that we can work together to finally end this discriminatory ban and I look forward to the response from the Administration.”

Sebelius responded, “If I am confirmed as Secretary, I will work to repeal this ban as quickly as possible to comply with the law.”

The proposed regulation was brought to the Office of Management and Budget, and advocates working on the issue expect a regulation to be issued for public comment shortly.

“We’re all hopeful it will be coming in the next month,” said Neillson. “We continue to be hopeful that the regulation will come out imminently. There are people who are suffering to be with their families.”

After the regulation is issued, people will have 60 days to comment, and AIDS advocates will come out in full force in support of the new regulation.

Canadian Martin Rooney is leading a campaign to denounce the ban. After traveling back and forth across the border for years, in 2007, Rooney was denied entry because he was HIV-positive. “I felt violated that day,” Rooney said. He is working to fight the ban, starting a facebook group calling on Obama to lift the ban that now has more than 1,100 members. He is organizing a rally in Vancouver on August 16—without the help of the AIDS organizations in the area. “They have HIV-positive board members who go across the border without problems and don’t want to be called out,” Rooney said. “But I think if there’s injustice for one HIV-positive person, we all suffer.”

In the mean time…

The exclusion of the Canadians from the conference proved an unfortunate, but teachable, moment for the rest of the conference participants. The conference room was filled with signs reading “President Obama Must Live the Travel Ban!” On Wednesday Johns Hopkins professor Chris Beyrer spoke about the travel ban, and other immigration and refugee issues that affect people living with HIV/AIDS.

A group of Canadian and American summit participants will be meeting with Crowley and officials from OMB later today to discuss the travel ban.

Resolutionary

Thu, 04 Jun 2009 18:31:00

The day before the North American Housing and HIV/AIDS Research Summit IV got underway this week, conference organizers gathered with New York Congressman Jerrold Nadler, people living with HIV and local providers at a press conference in Washington, D.C. to announce Nadler’s reintroduction of a Congressional resolution establishing the critical role of housing in fighting HIV and AIDS.

Speakers Tuesday included National AIDS Housing Coalition Executive Director Nancy Bernstine, Housing Works President and CEO Charles King, Delaware advocate Joe Scarborough, Johns Hopkins Bloomberg School of Public Health Researcher Dr. David Holtgrave; and J’Mia Edwards, a D.C. resident on an waiting list for housing funded by HOPWA, the federal AIDS housing program.

Edwards broke down in tears when describing her tenuous housing situation; she has been told she will have to leave her current home but doesn’t know when or where she will go. “I’m tired of seeing this person or that person for answers. I’m afraid of getting sick,” she said before touching Nadler’s elbow, looking at him directly and thanking him for reintroducing the resolution.

“I’m proud to stand here with you and these advocates,” said Nadler, who emphasized that he is pushing for $360 million in HOPWA funds. The President’s latest budget flat funds the program.

Way to go, Joe

Scarborough, after receiving NAHC’s call to action, was able to convince the Delaware legislature to unanimously endorse the same resolution that Nadler introduced. He also got Delaware U.S. Representative Mike Castle to support the resolution on the federal level. Castle is the bill’s only Republican cosponsor.

Scarborough worked with allies in different sectors of Delaware that normally don’t get involved in this conversation, including Planned Parenthood.

“I’m hoping this resolution brings new voices to the discussion and inserts housing into the conversation about HIV prevention and treatment,” Scarborough said.

This is a personal issue for Scarborough. He has been HIV-positive for 17 years. He is on a waiting list for both Section 8 and HOPWA housing. He is “doubled up”—living with friends, but doesn’t have a home of his own.

Rent Cap is Due

Wed, 03 Jun 2009 15:22:00

HIV-positive tenants have been regular visitors in Albany the last few weeks, pushing a bill that would cap rent payments at 30 percent of an HIV-positive person’s income. Those visits culminated with recent emotional testimony in front of the Senate Social Services committee and appears to have paid off: The legislation has passed through the Social Services committees in both the Senate and the Assembly, and has more cosponsors than ever before. There are currently 29 Assembly cosponsors and 10 Senate cosponsors.

“I’ll tell you what I spend my $11 a day on,” Michael, a HASA client and a military veteran testified in the Senate Social Services committee. ”I need a phone in order to have access to my case worker, dialysis center, other medical providers and keep my family up to date about my health issues. I have a special renal diet as a dialysis patient and a person living with HIV/AIDS, but I often can’t meet those requirements because I can’t afford those foods.”

The “30 percent rent cap bill” (S.2664/A.2565) passed in the Senate Social Services Committee for the first time that day. It has twice passed through that committee in the Assembly since the bill’s introduction in 2007.

The bill is sponsored by Senator Tom Duane and Assembly Member Deborah Glick and would correct a cruel anomaly in the way HIV/AIDS Service Administration (HASA) charges rent. HASA housing is the only public housing program in the state that doesn’t cap rent payments at 30 percent of a tenant’s income and instead take all but $330 in income earned by its tenants. The lack of a rent cap leaves tenants at $11 a day.

If this bill becomes law, SSI clients would have an average of $122 more each month to live on, and SSD clients would have an average of at least $195 more each month to live on.

Duane and Glick deserve praise for pushing this legislation and fulfilling their promises at a March forum. The duo promised to write letters to colleagues and to the New York State Office of Temporary and Disability Assistance (OTDA) and the New York City Human Resources Administration (HRA)—which jointly fund HASA—about this legislation.

In another positive sign, the mainstream media is starting to catch on. In a Daily News op ed Errol Louis also noted the inanity of HASA’s housing policy. “Most housing programs aimed at helping the poor – including Section 8, veterans’ benefits and public housing – require the tenant to contribute a maximum 30% of their income for rent,” he wrote on May 31. “It’s a national, generally accepted standard, but unless certain federal money is used, the 30% cap doesn’t apply. As a result, many of our most vulnerable poor people – whose housing help comes from the New York City HIV/AIDS Services Administration – are forced to pay, on average, more than half their income for rent.”

Money, money, money

The passage of the bill this year is an uphill battle, because Governor Paterson said he will not sign any legislation with new costs attached to it this year. And OTDA and HRA are both opposed to the law’s change, expecting that it will cost them money.

But according to an analysis presented by Ginny Shubert of Shubert Botein Policy Associates, estimated direct savings of over $19 million from prevented evictions would easily outweigh the projected costs of $16 million of the 30 percent rent cap (5.6 percent of current rental assistance costs for this group), which would be shared between New York State and City.

Approximately 23 percent of HASA clients on rental assistance are approved for rent arrears payments during the course of a year, at a cost of about $4.7 million. Many others simply lose their apartments and become homeless. The estimated cost of an eviction for a HASA client is $15,600, which includes the cost of an average length of stay in emergency housing, security deposits, and moving costs.

Although HRA dispute the cost savings and sent a memo of opposition, they have not provided alternate analysis. At a Senate Social Services committee last month, Sen. Daniel Squadron of the Social Services Committee said unless the City or State provides alternative numbers, the Senate is going to use Shubert’s numbers in its decision.

“The City hasn’t done the research themselves,” said NYCAHN Organizer Jaron Benjamin. “HASA said they only have 72 evictions per year. There’s no way that 20 percent of the 11,000 HASA clients in independent housing get eviction notices and HASA is saving everybody from being evicted but 72 people.”

Make two calls to Albany to keep the momentum going!

1) Call Senator Carl Kruger, Chair of the Senate Finance Committee, at (518) 455-2460. Say, “I’m calling to urge Senator Kruger to support Senator Duane’s AIDS housing bill, Senate bill number 2664, by scheduling a Senate Finance Committee vote this week. This bill would address the rising rate of homelessness among people living with AIDS in New York City.”

2) Call Assembly Member Denny Farrell, Chair of the Assembly Ways and Means Committee, at (518) 455-5491.

Say, “I’m calling to thank Assembly Member Farrell for cosponsoring Assembly Member Glick’s AIDS housing bill, Assembly bill number 2565. I also want to urge him to schedule a committee vote for the legislation this week. Passing this legislation is critical to addressing the rising rate of homelessness among people with AIDS in New York City.”

Contact Jaron Benjamin at (718) 864-3932 or jaron@nycahn.org for more information.

Action Alert: Call City Council to Restore Budget Cuts for AIDS Housing!

Wed, 03 Jun 2009 14:26:00

The City Council is aiming to vote on the City Budget early this year, which gives us only a few short weeks to fight against the cuts to HIV/AIDS Services Administration (HASA)! The Mayor has proposed cutting case management services in supportive housing, overseen by HASA, by $1.9 million.

Right now, City Council members are meeting by borough to decide on important budget restorations, and we need you to tell them to stop the Mayor’s cuts to case management in housing for people living with AIDS!

Call the Chair of your Borough Delegation and Speaker Quinn’s office TODAY and say the following:

“I’m calling to oppose the Mayor’s budget cuts to AIDS housing programs. We need the City Council to restore case management in HASA-supported housing for people living with AIDS. We can’t afford to cut AIDS housing funding when homelessness is rising and more people are becoming eligible for HASA.”

If you have lived in congregate or Scatter Site I housing, tell them your personal experience with the programs, and how case management services helped you.

Please take a moment to call today! Don’t let AIDS services take another hit!

Contact Numbers for heads of Borough Delegations:

Manhattan
Gale Brewer
212-788-6975

Daniel Garodnick
212-788-7393

Brooklyn
Erik Martin Dilan
212-788-7284 or 718-642-8664

Queens
Leroy Comrie
212-788-7084

Bronx
Maria Baez
212-788-7074

Staten Island
James Oddo
212-788-7159

Contact number for Speaker Quinn’s office:212-788-6887.

For more information, please contact Kristin Goodwin, Director of NY Policy and Organizing, Housing Works, k.goodwin@housingworks.org.

BARRED!

Thu, 28 May 2009 19:47:00

Housing Works, in concert with the National AIDS Housing Coalition (NAHC) and the Ontario HIV Treatment Network (OHTN), is outraged that up to 60 Canadians living with HIV have been denied entry into the United States, contrary to stated U.S. policy that foreigners living with HIV would no longer be barred from entering the country. The groups are calling on Secretary of State Clinton to resolve the matter and on President Obama to do away with Department of Health and Human Services (DHHS) regulations that are effectively keeping the HIV travel ban in place.

In July 2008, President Bush signed a law authorizing the Department of Health and Human Services to lift the decades-long ban on foreigners living with HIV entering the United States. The U.S. is one of only 14 countries* in the world that bar entry to persons with HIV, a fact that has drawn broad condemnation from both domestic and international human rights organizations.

Yet the ban still has not yet been stricken from DHHS regulations; instead, the Department of Homeland Security put into place a series of measures designed to “streamline” the process for entry into the U.S. for people living with HIV. However, this process is an ill-conceived bureaucratic tangle with such onerous requirements that it is tantamount to a complete ban on people living with HIV coming into the United States.

“This new incident proves that AIDS stigma is alive and well in the United States and actively being promulgated by the United States government,” said Housing Works President and CEO Charles King. “President Obama says that he wants to repair America’s damaged relationships with foreign countries. Let him prove it by taking immediate action to ensure that the DHHS gets this hateful regulation off its books.”

A shameful violation of privacy

The 60 Canadians had planned to attend the North American Housing and HIV/AIDS Research Summit in Washington, D.C. from June 2 to June 5. The OHTN and NAHC are cosponsors of that event.

In March, DHHS officials indicated that granting a “designated event HIV waiver” for the Housing Summit was underway. Such waivers are designed to allow people living with HIV to attend conferences in the U.S.

On Friday, May 22, 11 days before the summit start date, the Ottawa Embassy informed the OHTN that each of the 60 people in its delegation to the Washington, D.C. AIDS Housing Summit would have to comply with the new, severely onerous visa process.

The visa process requires, among other things, a face-to-face interview; a photo; a $131 money order from a specific Canadian bank; an agreement not to extend the visit for any reason; completion of an intrusive and humiliating health form, and a pledge that the applicant has adequate health coverage—something that many U.S. citizens living with HIV/AIDS are still denied.

To add insult to injury, because the OHTN was informed of the new requirements on Friday, May 22, the Canadians could not even attempt to meet those requirements until Monday, May 25, barely one week from the June 2 start date of the conference—and to do so, they would have to travel from all over Canada to a specific Ottawa U.S. consulate.

“Not only are these requirements an affront to people living with HIV in Canada, they were impossible to meet. There was no way to physically get people to the Ottawa Embassy on such short notice,” said Dr. Sean B. Rourke, scientific and executive director of OHTN. “Furthermore, requiring people to give their name, a photo and confidential health information to the U.S. government is a violation of their privacy and inconsistent with our commitment to protect personal health information. It shows a lack of sensitivity to the very real stigma and discrimination that people living with HIV/AIDS face every day of their lives.”

*The other countries that ban visits by people living with the HIV besides the U.S. are Brunei, Egypt, Iraq, Yemen, Malaysia, Oman, Qatar, Singapore, Sudan, South Korea, Tunisia, Turks & Caicos Islands and the United Arab Emirates.

The Update will follow up on the story of the banned Canadian OHTN delegation next week.

photo courtesy: http://www.flickr.com/photos/omegaman/204096552/

Nadler Takes AIDS Housing to the House

Thu, 28 May 2009 18:57:00

New York Congressman Jerrold Nadler will demonstrate his steadfast support for AIDS housing next Tuesday, when he holds a press conference to announce his introduction of a Congressional resolution establishing the critical role of housing in fighting HIV and AIDS. While not publicly available yet, the resolution goes into convincing detail about both the studies and statistics that prove the need for stable, affordable housing for people living with HIV and AIDS as well as housing’s effectiveness in improving health outcomes.

The press conference will take place Tuesday, June 2 at 12:30pm outside of the Cannon House Office Building; 300 New Jersey Ave (and Independence Ave), SE, Washington, DC.

Resolution cosponsors include Representatives Jim McDermott (D-WA), Barbara Lee (D-CA), Joe Crowley (D-NY), Howard Berman (D-CA), Raul Grijalva (D-AZ), Barney Frank (D-MA), Res. Comm. Pedro R. Pierluisi (D), José Serrano (D-NY), John Lewis (D-GA) and Mike Castle (R-DE).

“Advances in treatment have offered new hope to people living with HIV/AIDS, but the costs associated with these treatments often force people to decide between essential medications and other necessities, such as housing,” Nadler told the Update. “That is why I am reintroducing a resolution that would shine a light on the toll that homelessness and unstable housing take on people living with HIV/AIDS.”

A crisis near by

Representatives from the National AIDS Housing Coalition, Housing Works, the Ontario HIV Treatment Network (OHTN) , and the Johns Hopkins Bloomberg School of Public Health will attend the press conference, as will J’mia Edwards. Edwards is a housing advocate who is on the waiting list for HOPWA-subsidized housing in Washington, D.C.

Last October, the D.C. Department of Health told Edwards she would have to leave her subsidized housing, but since then she has been unable to get a clear answer about when and where she will go. “We don’t know anything! It puts you between a rock and a hard place. I don’t know where to register my kids for school,” said Edwards, a mother of three. “I constantly worry. I don’t sleep. I think what am I going to do?”

Last December, AIDS advocates drew attention to the District’s outrageous AIDS housing waiting list, for which no satisfactory explanation could be provided. Thanks to activist pressure, D.C’s Department of Health pledged to take steps to address its 278-person HOPWA housing waiting list. Today that list stands at approximately 350 people.

Reaching the summit

Nadler’s press conference is also the unofficial kickoff of the three-day North American AIDS Housing and Research Summit IV, featuring appearances by White House AIDS chief Jeffrey Crowley and renowned humanitarian Stephen Lewis. This year, the Summit will take place from Wednesday, June 3 to Friday, June 5 at the Doubletree Hotel Crystal City near Washington D.C. See conference information, including registration.

Organized by the National AIDS Housing Coalition, the Ontario HIV Treatment Network (OHTN) and the Johns Hopkins Bloomberg School of Public Health, the Summit will feature addresses by:

Stephen Lewis (Friday, June 5, 10:30 am): former UN special envoy for HIV/AIDS in Africa from 2001 to 2006, Lewis is codirector of AIDS Free World, a new international AIDS advocacy organization. Lewis was the Canadian ambassador to the United Nations from 1984 to 1988.

Jeffrey Crowley (Wednesday, June 3, 1:30 pm): Director of the Office of National AIDS Policy. Before his appointment to the position by Pres. Obama, Crowley was a Senior Research Scholar at Georgetown University’s Health Policy Institute and a Senior Scholar at the O’Neill Institute for National and Global Health Law, Georgetown University Law Center.

Also speaking will be Fred Karnas, Senior Advisor to HUD Secretary Shawn Donovan, and Esther Boucicault, executive director of Haiti’s Fondation Esther Boucicault-Stanislas and the first person in Haiti to publicly discuss living with HIV.

Last year’s summit generated in-depth coverage from the Wall Street Journal and featured preliminary data from a groundbreaking Centers for Disease Control and Prevention study, a Chicago Housing for Health Partnership study and Positive Spaces Healthy Places, the first Canadian study to examine the link between housing and health.

Those studies showed that providing housing for homeless people living with HIV/AIDS improves health outcomes and saves millions in medical costs. This year’s summit will feature final results data from each of these studies, as well as dozens of other papers and presentations.

For more information, contact Virginia Shubert at gshubert@shubertbotein.com

Knocking on the Doar

Thu, 28 May 2009 17:20:00

This week’s City Council General Welfare budget committee hearing led to further questions about the dramatic impact of possible cuts to New York City’s AIDS housing services. Mayor Bloomberg’s controversial proposal to cut case management in supportive housing, eliminate the Scatter Site II program, and cut food and nutrition contracts were all questioned in the hearing.

Council Member Bill de Blasio, chair of the General Welfare Committee, asked Human Resources Administration Commissioner Robert Doar pointed questions about the effects of HIV/AIDS Services Administration (HASA) cutbacks. (This wasn’t the first time Doar faced City Council’s wrath over AIDS housing this year.) De Blasio questioned HASA’s ability to pick up new case management responsibilities when clients receive less support from community housing providers because of defunding.

Doar stuck to the HASA mantra that HASA will be able to maintain the same level of services to clients once cuts are made. Advocates in the audience were visibly frustrated with his response, and many spoke against it at the end of the day during public testimony.

De Blasio also pointed out the high number of HASA clients living in commercial SROs and the rise in new HIV infections that has been reported in the last year by the Department of Health and Mental Hygiene. When asked how these issues affected the decision to make cuts, Doar said he did not believe that the rise in new infections would affect the number of clients. De Blasio responded that HRA was painting a picture that was rosier than the reality and that HIV and AIDS was not something that New York City can ignore.

Council Members Letitia James and Gale Brewer also asked specific questions about the ending of Scatter Site II housing and the cut to Momentum’s meals program, citing the value of these services and the concerns of their constituents. Brewer even mentioned that she had spoken with someone over the weekend about the cuts to HASA at a neighborhood street fair. Advocates and consumers continue to push for these cuts to be restored.

More is more

Ironically, as the city proposes cuts to HASA, the Journal of the American Medical Association published the results of the groundbreaking Chicago Housing for Health Partnership (CHHP) study. The CHHP study revealed what advocates have long known and been fighting for: More housing is needed for people with chronic illnesses such as HIV/AIDS.

CHHP showed that stable housing and supportive services drastically improve health outcomes for those with chronic illnesses, including HIV/AIDS. CHHP also showed that when people are stably housed, not only does their health improve, but they access other services, such as shelters and emergency rooms, much less. Not only is providing stable housing the right thing to do, it costs cities much less in other services.

As we head into June, it is now in the hands of the City Council to make restorations to the cuts to HASA. In the next month, visibility is key as we take to the City Hall Steps to call for these changes to the budget.

Numbers Game

Thu, 28 May 2009 17:18:00

A New England Journal of Medicine article published Thursday, April 30, “Effect of Early versus Deferred Antiretroviral Therapy for HIV on Survival,” provides the best evidence yet that starting treatment for people with HIV early on improves health outcomes. While many have suspected this was the case, this study is the first that looks at the difference in outcomes for people who initiate treatment when their T-cell count is above 500. The study highlights the troubling fact that New York City and State continue to cling to an antiquated definition of HIV-related illness and an approach to HIV that has tragic consequences.

The study found that people who begin antiretroviral AIDS treatments before their CD4 cells go below 500 have significantly better health outcomes. In fact, the critical finding is that people who wait until their T-cell count falls below 500 have a 94% increased rate of mortality over folks who initiate treatment earlier. Those who wait until their T-cells fall below 350 have a similarly dramatic increased risk of mortality.

Yet here in New York State, the general standard of care, as promulgated by the New York State AIDS Institute, does not recommend universal offering of treatment until T-cells have fallen below 350. Not only that, but the AIDS Institute definition of “HIV-related illness,” which determines access to HIV housing assistance state-wide and almost all HIV/AIDS services in New York City, remains a T-cell count below 200. The AIDS Institute announced recently that it is reviewing treatment guidelines in light of this study but said nothing about the definition of HIV-related illness.

A horrible choice

Research also shows a strong and consistent relationship between housing status and HIV treatment access, health, and risk behaviors, regardless of personal characteristics and service use, and that housing assistance is among the strongest predictor of health outcomes. Housing Works has strongly advocated making HIV/AIDS services, including housing assistance, available to all low-income people living with HIV, something both New York City’s mayor and city council speaker have opposed. But it would be criminal for the AIDS Institute to change its treatment guidelines without changing the definition of HIV-related illness.

Already, low income New Yorkers are put in the position of having to make the horrible choice between initiating treatment that can dramatically prolong their lives but preclude them from receiving equally life-saving housing and services or waiting until their HIV illness advances to the point that they qualify for help while hoping that their immune system can recover, something it never fully accomplishes. Recommendations regarding early treatment would make this choice even more pernicious.

The evidence is very clear. Housing and services are as critical to care for people with HIV as medication. Not only that, but housing and services are a cost-effective way to prevent transmission. We should not make people living with HIV decide whether to risk their lives by remaining homeless or by refusing treatment. The AIDS Institute must act now to change both the treatment guidelines to mandate that people who are infected be universally offered treatment on a voluntary basis and to change the definition of “HIV illness” to HIV infection.

A version of the above was published as an op-ed in the May 28, 2009 issue of Gay City News.

Health Commissioner Hijinks

Wed, 20 May 2009 10:08:00

This week’s appointment of New York City Health Commissioner Thomas Frieden to head the Centers for Disease Control and Prevention (CDC) provoked dismay among AIDS advocates and the gay press in New York City and beyond (with some exceptions).

As Health Commissioner, Frieden tried to do away with informed consent for HIV tests, made an Orwellian power grab for the medical information of people living with HIV, and infamously mishandled the so-called AIDS “superbug” case in 2005. As head of the CDC, Frieden may try to bully states into adopting routine testing without informed consent and will almost certainly take a step away from the real concerns of real people living with HIV/AIDS.

“It’s disheartening that President Obama would put the nation’s health in the hands of somebody with Frieden’s record,” said Housing Works President and CEO Charles King. “If Frieden could not work with community advocates in New York City, he will be even more disconnected as the head of the CDC. We will do everything possible to make sure that people living with HIV have a seat at the CDC’s table.”

Bailey House Executive Director Gina Quattrochi pointed out that Frieden was likely to pursue some sound AIDS-related policies such as support for syringe exchange and widespread condom distribution, but, like King, doubted Frieden could work with people living with AIDS and AIDS service providers effectively.

“The bad news is that [Frieden’s] propensity to ignore the concerns of affected communities may hinder his ultimate success in achieving the goals of aligning public health with the best that science has to offer,” she said.

New York City’s Gay City News raked Frieden over the coals for his failure to significantly reduce HIV infections among gay and bisexual men, while Chicago’s Windy City Times and other gay outlets condemned him for prematurely tipping off the media to the later-disproved existence of a deadly, completely drug-resistant mutation of the HIV virus.

“[Frieden] demonized gay men during the supervirus story, he pathologized gay men and scared the entire world about a rampaging untreatable virus that was later disproved,” veteran Chicago AIDS advocate Jim Pickett told the Update. “We’re still feeling the effects. People think a supervirus is rampaging and gay men are immoral and spreading dangerous diseases. That story was picked up everywhere.”

Pickett added, “[This appointment means that] the gay community and the HIV prevention community need to pay attention. This is not the time to sit back in the La-Z-Boy and say, ‘The Dems are in Congress. Everything is alright.’ ”

Same name, same beliefs?

New York City’s new Health Commissioner, Thomas Farley, bears an eerie resemblance to the outgoing one. According to an article the New York Times, Farley is a public health zealot who, like Frieden, is an infectious disease specialist who trained at the CDC and overseas. Farley spent a year as one of Frieden’s adviser’s in New York City.

An unnamed health official told the Times that Farley “shares with Mr. Bloomberg an unbridled — and at times contentious — enthusiasm for using government” to improve public health.

And, like Frieden, Farley seems to have a knack for antagonizing the gay community. He is already embroiled in a controversy over an article he wrote for the Washington Monthly advocating the closure of bathhouses.

That article was also disheartening because it revealed Farley’s attitude toward community input regarding HIV prevention: “As beneficial as [community input] may be in building mutual trust,” he wrote, “it prohibits health departments from taking virtually any action to prevent AIDS that contains even the barest whiff of enforcement. Inclusion can be a good thing in planning public policy—but it can also be taken too far.”

Farley hails from the Tulane School of Public Health and Tropical Medicine and spent time in the Louisiana Office of Public Health. Executive Director of the New Orleans AIDS Task Force Noel Twilbeck Jr. is familiar with Farley’s work in Lousiana. Farley asked Twilbeck to speak to classes at Tulane about HIV. When the Update contacted Twilbeck, he had not heard of Farley’s new appointment and reacted positively.

“He always included the AIDS community in dialogue regarding policy. He relied on the community for information. He’s a very nice guy, easy to speak with. He had an ability to take a creative look at things and engage in out of the box thinking that I really admire. I think the world of him,” Twilbeck said.

Twilbeck was not familiar with Farley’s bathhouse article but pointed out that New Orleans still has two bathhouses.

Joyce Turner-Keller, executive director of the Baton Rouge AIDS service organization Aspiring Dreams, has never met Farley, but warns New Yorkers to be wary. “As a positive woman and advocate one of the issues we faced with the Louisiana Office of Public Health was that we don’t get a lot of support, thought that’s not just on [Farley]. But if you’re assertive and knowledgeable, that’s an issue. Unless his mindset has changed as far as consumers, I would proceed with caution,” she said.

Mayor of Mean Won’t Come Clean

Tue, 19 May 2009 17:01:00

New York City Mayor Michael Bloomberg took another brutal swipe at homeless people and people living with HIV and AIDS last week when he announced that the Department of Homeless Services will be collecting rent from working individuals and families who use the city’s shelter system.

Mayoral candidate Comptroller Bill Thompson echoed homeless and AIDS advocates concerns over the perversity of the policy. “Taking a portion of a family’s limited income as rent is quite simply counter-productive. The more families pay to be sheltered, the longer they will need to remain in a shelter—at a greater cost to the City—as they struggle to accumulate financial resources necessary to secure a new place to live,” Thompson said.

Read the letter that Thompson sent to Bloomberg and see Thompson in action:

Although a State regulation allowing the city to collect rent from people using shelters has been on the books since 1997, it has only very recently been implemented.

“It’s abundantly clear that Bloomberg has decided to resurrect this Dickensian regulation simply to save the city money in a time of financial crisis. Bloomberg has balked at raising income taxes on the rich but has no problem with burdening the vulnerable people who need the most assistance in these tough economic times,” Housing Works Director of New York Policy and Organizing Kristin Goodwin told the Update.

Time to testify

Combined with the nearly $10 million in cuts to AIDS services in Bloomberg’s proposed 2009-2010 budget, the announcement showed the mayor’s baffling indifference to homeless New Yorkers, who are disproportionately affected by HIV/AIDS.

AIDS advocates are ramping up the pressure on Bloomberg to not only back off the cuts but also account for nearly $1 billion in federal Medicaid stimulus money in the new budget. So far, the Mayor’s office has only made anemic attempt at transparency, directing New Yorkers to its detail-challenged stimulus tracker. (The City should take transparency lessons from—gulp—Albany when it comes to stimulus transparency).

Earlier this month, nine protesters were arrested during a civil disobedience action at City Hall that brought attention to Bloomberg’s bungled public health budget.

Even people inside City Hall are frustrated with the Mayor of lack of transparency. One insider told the Update that one borough’s City Council delegation may go over Bloomberg’s head and appeal directly to the governor in order to find out how the City is using its billions in stimulus aid.

The next chapter in the budget drama will take place next week at City Hall budget hearings. The Council Finance Committee, General Welfare Committee and Women’s Committee are holding a joint hearing on Tuesday, May 26 at City Hall in the Council Chambers. Housing Works and other AIDS organizations will be submitting testimony and making public comments.

The hearing is open to the public, so anyone who wants to explain to City Council what’s wrong with Bloomberg’s budget should attend. The hearing begins Tuesday, May 26 at City Hall at 10 am with testimony from HRA/Social Services; 11:30 is Administration for Children’s Services, and 1:30 is the Department of Homeless Services. Public comment begins at 3:30 pm.

See the Council meeting schedule.

People, Get Ready

Tue, 19 May 2009 14:15:00

The Campaign to End AIDS (C2EA) released its position paper on a re-authorizing the Ryan White Treatment Modernization Act this week. The national coalition of people living with HIV and AIDS recommended that the legislation only be extended for one year, with specific benchmarks regarding preparations for integrating Ryan White into fast approaching federal health-care reforms and President Obama’s promised National AIDS Strategy.

Read the position paper.

The existing Ryan White legislation sunsets on September 30. “Ryan White has always been an imperfect approach to fighting AIDS in the U.S. and now we know that health care reform is coming,” said C2EA National Secretary Marsha Jones. “It is absolutely essential that the AIDS community limit the Ryan White extension to one year with a focus on rewriting the legislation. If we extend it for three to four years, as many advocates would like, we are going to get left behind.”

C2EA leaders worry that based on the current Ryan White legislation and funding system, community-based organizations that depend upon Ryan White funding are not prepared to work with Medicaid, Medicare, and private insurers, all of which are likely to be key players in the impending healthcare reform landscape.

Crowley: Change is coming

Housing Works Vice President of National Advocacy and Organizing Christine Campbell says that Jones’ concerns echo what has been coming out of the White House.

“In my conversations with [Office of National AIDS Policy Director] Jeffrey Crowley, Crowley has made it very clear that the AIDS community needs to be prepared for major changes, especially being ready to work with Medicaid, Medicare, and private insurers,” said Campbell. “Improving the flexibility of Ryan White is important step in making sure that happens.”

C2EA has proposed three benchmarks that would ensure a smooth transition to a new health care era:

By month one of the extension, the creation of a bipartisan committee tasked with ensuring effective links between Ryan White and health care reform
By month six, development of reworked Ryan White language that includes strategies for meeting the needs—such as health care access and substance abuse services—of people living with HIV AIDS, including but not limited to women of color, ethnic minorities who identify as MSM and people living in rural areas.
By month nine, completed draft legislation reflecting the work of the bipartisan committee.

For more information regarding C2EA’s effort to improve Ryan White and ensure that community-based AIDS organizations are ready for health care reform, contact Campbell at campbell@housingworks.org.

Remembering Rodger

Tue, 19 May 2009 08:00:00

This week, I got the unexpected news that my friend, the legendary AIDS activist Roger McFarlane had taken his own life. I was in shock and deeply saddened.

Roger was a terrific friend, not only to me as an individual and countless others around the world but a terrific friend to the LGBT and HIV communities as well. Rodger was a co-founder of ACT UP New York. He was a mentor to countless activists and employees at numerous AIDS organizations and a critical supporter, both intellectually and financially, of advocacy for gay and lesbian and HIV causes. Rodger was a hero!

Rodger was critical to the development of many of the largest and most effective organizations that would lead the fight against AIDS. He started the first AIDS hot line on his own home phone; he was the first executive director of GMHC and Broadway Cares/Equity Fights AIDS (he combined the two organizations). Rodger was also the President of Bailey House and later the executive director of the Gill Foundation.

An accomplished athlete, Rodger had no physical fear and his quick mind made him a brilliant strategic activist; Rodger always could construct a plan to rectify any problem and was able to find the clever media hook to draw public attention to the problem. He never reacted with anger and haste. He preferred a planned response, crafted with a cool hand. He was insightful, never flustered and always had a “we can lick this approach” to overcoming any challenge.

“Tell me what’s going on,” would be followed by, “That outrageous!” and then, “Here’s how we fix this thing.” He would then ask “What do you think?” He was always ready to hear suggestions to refine his ideas.

Rodger Takes on Guantanamo Bay

When ACT UP and others were fighting to close the HIV detention camp at Guantanamo Bay, I went to Rodger and asked for help planning a high profile press event and civil disobedience action. Again it was: “Tell me what’s going on,” and “That’s outrageous!,” followed by, “Let’s kick their motherf***ing asses!” and, “Here’s what we do…”

And here is what he did: Rodger hired young ACT UP member and fledgling producer David Binder (now a Tony nominee for 33 Variations) to produce a rally and press conference at Rockefeller Center near the immigration programs passport office. We managed to get Dennis DeLeon (then the New York City Commissioner of Human Rights), Jessie Jackson, Susan Sarandon and director Jonathan Demme and other high-profile AIDS community members involved in a coalition planning effort, and before we knew it, 40 boldfaced names had been arrested on Fifth Ave for blocking traffic while demanding medical parole for the sickest and the closing of the camp.

Jessie and Rodger insisted that we all go through the system and stay over night in jail to keep the TV cameras on the issue. They both agreed it would have optimal benefit to keep our issue in the media for as long as possible.

Within a few hours Mayor Dinkins was dispatched to the jail, at President Clinton’s request, to talk Jessie and the rest of us into a quick quiet release. He did not want negative attention about what was becoming an increasing public black eye to his fledgling presidency.

Jessie was told that the Clinton Administration would look favorably on our demands if we took desk appearance tickets and left jail quickly to turn the press heat off. We were warned that to stay in jail over night would have a less favorable response. Jessie said that David had asked him personally as well, as a good Democrat, to leave with him right away. We caucused and decided that we were likely to get some of our demands met if we left, ultimately helping the HIV-positive detainees in Guantanamo. We felt that while this war was not over, the battle had been won; we had Bill Clinton dispatching Mayor Dinkins to respond to our actions.

We took the desk appearance tickets and left the holding cells. Shortly thereafter all the pregnant women and people with a full-blown AIDS diagnosis were released from the Guantanamo HIV detention camp—the same camp where the terrorist are being held today.

Thank you Rodger, for all you did. Rest peacefully our fearless warrior!

Eric Sawyer is a veteran AIDS activists and cofounder of Housing Works.

Needling Obama

Thu, 14 May 2009 16:24:00

President Barack Obama’s decision to maintain the federal ban on syringe exchange funding bitterly disappointed harm reduction and AIDS advocates last week. Nonetheless, some of those same advocates say that chances are better than ever that the House will remove the rider that prohibits the funding—as long as Representatives are convinced that needle exhange is no longer a politically dangerous issue.

Like many, AIDS Action Political Director Bill McColl, one of the key advocates working on this issue, criticized Obama’s lack of gumption on needle exchange. “This is not something we should be making political calculations about,” he said.

The White House defended Obama’s decision. “We have not removed the ban in our budget proposal because we want to work with Congress and the American public to build support for this change,” a spokesperson said. “We are committed to doing this as part of a National HIV/AIDS strategy and are confident that we can build support for these scientifically-based programs.”

Mountains of studies have proven that syringe exchange programs decrease infections and don’t promote drug use. Nationally, there are more than 210 needle exchange programs in place in 36 states, and approximately half of the programs receive local or state funding. Many operate on a shoe-string budget.

Turning to the House

Despite Obama’s willingness to punt on needle exchange, there is still a fair chance of using a Congressional rider to achieve the same end.

“Despite the fact that Obama rolled over, and we wish he had sent a stronger message to Congress, we know the Democratic leadership is into [lifting the federal ban]. I think we’d definitely have the votes,” said Harm Reduction Coalition Regional Director Hilary McQuie.

All that has to happen is for the Chair of the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies Rep. David Obey (D-WI) to take the 1988 language creating the ban out of the Health and Human Services appropriations bill. The removal of the language would then go to a full House vote. Hill insiders say Obey is scared to go this route unless he knows for sure the measure would pass.

Obama will likely stay on the sidelines if Obey goes this route. A White House insider said that the President doesn’t like the practice of using riders in the budget process to address complex policy issues.

Some House members are worried about possible backlash from constituents, a fear advocates say is unfounded, noting the lack of organized opposition and the scant backlash when Congress allowed Washington, D.C. to spend its own funding on syringe exchange programming in 2007.

“The political threat is exaggerated,” McQuie said. “There is some opposition among drug warriors in Congress, but there’s no more questioning of the science like there used to be. You could see that in the press coverage when the syringe exchange ban was lifted in D.C. In the 90s, the syringe exchange advocates were portrayed as the ones with out-of-the-mainstream values. Now it’s the other way around.”

The missing piece? Advocates need to show Congress that needle-exchange is an important issue politically. “We’ve fallen short on some of the letters and calls and made it the path of least resistance,” McQuie said. “The House leadership has challenged the AIDS Service Organizations, ‘You say this issue is important to you, but we haven’t seen it.’ “

Serrano’s Stand

Once the ban is taken out of the rider, the next important step is for Congress to pass a bill ending the ban on federal funding for needle exchange. Rep. José Serrano (D-NY), has already introduced the Community AIDS and Hepatitis Prevention Act, a bill which currently has 89 sponsors and would permanently end the federal ban on syringe exchange.”

“I had hoped that the Obama Administration would support removing the ban on federal funding for syringe exchange programs in their Budget proposal,” Serrano said in a statement. “Although I am disappointed the budget did not contain this change, I welcome the President’s support for legislative action and I will continue my efforts here in Congress to lift this senseless prohibition.”

Let Obey know you want him to end the needle-exchange-funding ban! And let your Representative know you want him or her to vote for Serrano’s bill!

Step 1: Call for the Labor, Health and Education Appropriations Bill.

Call Rep. David Obey (WI) 202-225-3365, Chair of the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. Tell his office: My name is [NAME], and I live in [CITY, STATE]. Thanks for taking my call. I’m calling to encourage Rep. David Obey to take leadership to remove the federal ban on syringe exchange funding in the 2010 Appropriations Bill.

Step 2: Call your Representative.
Call the U.S. Capitol Switchboard (202) 224-3121 and ask to speak to your Representative. When calling the switchboard, you may give your zip code if you do not know the names of your members of Congress.When someone answers the phone, tell them: “My name is [NAME], and I live in [CITY, STATE]. Thanks for taking my call. I’m calling to encourage Representative [REPRESENTATIVE’S NAME] to cosponsor H.R. 179, the Community AIDS and Hepatitis Prevention Act of 2009.

If your representative is a co-sponsor thank them for their support of H.R. 179!

(See the list of cosponsors)

Action Alert: Tell Sen. Duane to Battle for GENDA!

Thu, 14 May 2009 16:23:00

Sen. Tom Duane needs to hear from you!

While Duane has long been the greatest champion of LGBT rights in the State Senate, there is reason to worry that the Gender Expression and Nondiscrimination Act (GENDA) could be pushed to the sidelines as Duane focuses his efforts on gay marriage. Duane needs to hear from GENDA supporters that equal rights for transgender people can’t be delayed another year!

Call Duane’s office at (518) 455-2451 and tell him that you’re counting on him to make sure GENDA (S.2406) gets to the Senate floor this year where it has a real chance of passing! Tell his office (or answering machine) that GENDA is important to you! You should also call your senator and tell him or her the same (find out who your senator is at nysenate.gov)

GENDA prohibits discrimination based on gender identity or expression and is particularly important for transgender people, who experience endemic discrimination. There are already similar laws on the books in New York City, Ithaca, Westchester County, Buffalo and other jurisdictions in New York. GENDA passed in the Assembly in April by a vote of 97 to 38.

GENDA was scheduled to pass out of the Government and Investigations committee last month. However, Duane wasn’t certain that he had the votes for passage, so he pulled it from consideration. And unfortunately, LGBT enemy Sen. Ruben Diaz Sr. is on the G and I committee. There are various strategies that Duane could still employ to make sure GENDA passes this year so it’s up to us to remind him to use his considerable power in the Senate to force action on the issue.

“The votes are almost there in the Senate. The momentum is there. The next five weeks will tell the tale,” said Empire State Pride Agenda Director of Public Policy and Education Ross Levi. “Everyone should do what they can to make sure that GENDA remains a priority in the Legislature and with Senator Duane. If [it doesn’t pass], we don’t want to have ourselves to blame.”

Stretching the Scraps

Thu, 14 May 2009 16:02:00

Last week President Barack Obama proposed the first increase to the Centers for Disease Control and Prevention’s HIV/AIDS, Viral Hepatitis, STD, and Prevention budget in three years. Although advocates support the way the CDC plans to use the inadequate boost of $53 million in new HIV/AIDS money, they are deeply concerned by the administration’s failure to fund the fight against viral hepatitis.

The CDC only received a $51,000 increase for hepatitis prevention. The agency received $421,000 for non-HIV STD prevention; and $398,000 to fight tuberculosis.

Colin Schwartz, National Alliance of State and Territorial HIV/AIDS Directors Viral Hepatitis/Government Relations Associate, said more funding is needed for advanced hepatitis screening, linking people to care, counseling, testing and surveillance.

One-quarter of all people with HIV/AIDS—250,000 people—are coinfected with HCV. In many communities, HCV-related liver disease is the number one killer of people with HIV/AIDS. Hepatitis C can also lead to liver cancer or cirrhosis.

“We want to make sure hepatitis prevention is slated to receive more than $51,000.” Schwartz said.Hepatitis C advocates are planning on lobbying Congress to add $30 million to the hepatitis budget.

You can urge your representatives to do so by calling the Capitol Switchboard at 202-224-3121. If you don’t know who your Representatives and Senators are, go to www.congress.org and enter your zip code in the upper right corner.

What $53 million gets

Fifty-three million is not enough to fight HIV in the U.S.: The CDC itself determined that $877 million a year is what is needed to be truly effective. Nonetheless, advocates say the CDC is making good use of the boost, by increasing testing, getting more people into care, and targeting populations at risk of contracting HIV.

“Obviously the main problems can only—or certainly most easily, and with less bitter fighting—be fixed with more money, but this seems at least on the surface to be a fairly thoughtful use of the small pot of money,” said Walt Senterfitt, a board member for the Community HIV/AIDS Mobilization Project. “The funding recognizes the need for new resources for targeted testing programs to reach MSM and especially MSM of color; that active rather than passive linkage to care and ongoing support is necessary; and that there are effective ways to do this for many people and populations, and evaluation is necessary.”

When you cut off the $2 million additional funding for staffing increases, here’s how the CDC’s AIDS funding breaks down:

$5 million – Expand its work to promote program collaboration and service integration to prevent HIV, STDs, viral hepatitis, and TB. An integrated approach to prevention will achieve the greatest impact in reducing disease transmission, reducing health disparities, and preserving the health of those who are living with these conditions because these conditions affect similar populations and coinfection can facilitate and accelerate their spread.

$27 million- Increase the reach of HIV testing with an emphasis on gay and bisexual men of all races/ethnicities, African Americans, and Hispanics by doing the following:

Awarding funds to state and local health departments to test up to 600,000 persons with HIV and identify up to 6,000 new HIV infections per year, with an emphasis on African Americans, Hispanics and gay and bisexual men of all races and ethnicities. Health departments will be directed to allocate approximately 50 percent of their awards to CBOs in their jurisdiction. This effort will build upon and expand the Domestic HIV Testing Initiative, begun in FY 2007.

$11 million- Expand efforts to link HIV infected persons to medical care and prevention services by awarding funds to state and local health departments to do the following:

Provide and evaluate active referral and linkage to care or other supportive services to at least 5,000 people living with HIV/AIDS or their partners; and support the delivery and evaluation of behavioral interventions to more than 2,000 newly and previously diagnosed people living with HIV.

$4 million- Increase the capacity of health departments and CBOs to deliver effective evidence-based HIV prevention interventions to high-risk populations such as communities of color and MSM of all races. CDC would reduce by 50 percent the backlog of organizations currently on waiting lists to receive training in effective HIV prevention interventions through CDC’s Diffusion of Effective Behavioral Interventions (DEBI) program.

$2.5 million – Strengthen the ability of health departments to monitor critical aspects of the HIV/AIDS epidemic in their local jurisdictions and report these data to CDC for national surveillance. This will also increase CDC’s ability to manage HIV surveillance data and improve timely reporting of these data.

$1.5 million – Support CDC‘s ability to collect data on the performance of HIV testing and other prevention programs, and monitor and publicly report on the progress of such programs.

AIDS Housing Now!

Thu, 14 May 2009 13:38:00

At the International AIDS Conference in Mexico City last year, AIDS advocates took the conference by storm. But that was only the beginning, With the North American Housing and HIV/AIDS Research Summit coming up on June 5, here’s another chance to show your commitment! Endorse the International Declaration on Poverty, Homelessness, and HIV/AIDS!

More than 600 people have signed on from countries including Kenya, Uganda. Nigeria, India, Cameroon,Pakistan, Brazil, Ghana, Nepal, Sri Lanka, Mexico, France, Costa Rica, South Africa, the United States, Canada,Egypt, Guatemala, Honduras,Denmark, Venezuela and Nicaragua. The declaration is important to show the International AIDS Society and governments throughout the world that housing and structural interventions are universally necessary for people living with HIV/AIDS.

Here’s the entire declaration:

Everyone has the right to a standard of living adequate for the health and well being of him [or her] self and of his [or her] family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his [or her] control.
- Article 25, The Universal Declaration of Human Rights

Whereas adequate and secure housing has long been recognized as a basic human right,

Whereas growing empirical evidence shows that the socioeconomic circumstances of individuals and groups are equally or even more important to health status than medical care and personal health behaviors,

Whereas in the case of HIV/AIDS, the link between poverty and disparities in HIV risk and health outcomes is well established, and new research findings demonstrate the direct relationship between inadequate housing and greater risk of HIV infection, poor health outcomes and early death,

Whereas poor living conditions, including overcrowding and in extreme cases, homelessness, undermine safety, privacy and efforts to promote self-respect, human dignity and the attendant responsible sexual behavior,

Whereas the lack of stable housing directly impacts the ability of people living in poverty to reduce HIV risk behaviors and homeless and unstably housed persons are two to six times more likely to use hard drugs, share needles or exchange sex than similar persons with stable housing,

Whereas, in spite of the evidence indicating that adequate housing has a direct positive effect on HIV prevention, treatment and health outcomes, the lack of adequate housing resources has been largely ignored in conferences and policy discussions at the international level, and

Whereas the United Nations, in both its 2001 Declaration of Commitment on HIV/AIDS and the 2006 Political Declaration on HIV/AIDS, embraced the goal of universal access to comprehensive prevention programs, treatment, care and support by 2010.

Therefore, we hereby demand that policy makers address the lack of adequate housing as a barrier to effective HIV prevention, treatment, and care; and we further demand that all governments fund and develop housing as a response to the AIDS pandemic.

For more information about the declaration and to register for the North American Housing and HIV/AIDS Research Summit, go to nationalaidshousing.org.

Arresting the Budget

Thu, 07 May 2009 10:34:00

Dozens of AIDS activists protested New York City Mayor Michael Bloomberg’s proposed budget cuts to AIDS services Wednesday outside of City Hall, and nine protesters were arrested inside the building when they blocked the Mayor’s office. The Mayor has proposed nearly $10 million in cuts to supportive AIDS housing, nutrition and HIV testing services, and nearly $20 million in cuts to public health services overall.

After less than ten minutes of sitting in front of the Mayor’s chambers chanting “What do we want? Housing for people with AIDS! When do we want it? Now!” the protesters were handcuffed one-by-one and led out the back door of City Hall to the First Precinct. On their way out, they saw Bloomberg himself, who was returning from a trip to the Centers for Disease Control in Atlanta, and chanted “Hey, hey, ho, ho, your budget cuts have got to go!”

The protesters from Housing Works and New York City AIDS Housing Network (NYCAHN) were held overnight and released Thursday at different points throughout the day. They were charged with disorderly conduct and obstructing government administration.

“I couldn’t sit back while the Mayor cut programs that will mean more people with AIDS living on the street,” said Guaylupo, a Housing Works staffer and NYCAHN board member who is HIV-positive.

The protests were covered by the New York Times City Room, the Associated Press and Gay City News

Protest prelude

While the activists were causing a ruckus on the second floor of City Hall, 50 people living with AIDS, AIDS service providers and Council Members held a rally on the building’s front steps.

“People might be getting arrested, but more importantly, people are dying of AIDS,” Council Member Rosie Mendez told the crowd, which included people from the Momentum Project, Gay Men’s Health Crisis and Bronx AIDS Services as well as NYCAHN and Housing Works. Council Member Letitia James also spoke to the attendees.

Mendez said that she will work with Council to attempt to restore funding to AIDS services using Council’s discretionary funding, but that she can’t do it alone. “We have to convince the majority of City Council that these cuts mean people’s lives.”

The $10 million in cuts include a $6 million axe to Scatter Site housing case management and the elimination of all funding for Scatter Site II housing. Funding for Scatter Site II housing was originally a joint program between the City and the State started in 2001. When the State pulled its funding in 2007,for a year the city funded it entirely out of its own pockets, but when cut time came, they decided to eliminate the program completely.

AIDS advocates are pushing for New York City use the $74 million that it will receive from Housing and Urban Development stimulus funding to restore these lifesaving programs. The Mayor has already used the $870 million dollars in Medicaid stimulus funding to fill unspecified budget holes.

The Mayor’s Response

The Mayor’s office says that the city is only allowed to use the Federal Medicaid Assistance Program (FMAP) funding for FMAP budget relief. “It is a (non-recurring) change in the Medicaid formula that reduces the amount the City has to reimburse. Put more simply, it is less cost, not more money,” said Jason Post, a mayoral spokesperson. He said the public can track all funding in the NYC Stimulus Tracker.

But the only details the Stimulus Tracker gives on FMAP is that the funding is going towards “budget relief.” It does not specify what specific programs in the budget are being relieved.

“The Mayor could have specified what programs the budget relief went towards,” said Housing Works Vice President of New York City Advocacy and Public Policy terri smith-caronia. “This response from the Mayor’s office is an effort to avoid accountability.”

The Mayor has proposed a $900,000 cut to rapid HIV testing, a program he already cut by $1 million last year. In addition, the Mayor is cutting almost half a million to nutrition programs for people with AIDS. According to the Momentum Project, which receives this funding, the cut will mean 4,333 fewer hot meals provided to poor people with AIDS in the city.

Other public health programs are also on the budget chopping block. The Mayor has proposed eliminating $2.5 million in funding for child dental programs and has significantly cut funding for Child Health Clinics.

Boo, Obama’s Budget!

Thu, 07 May 2009 10:10:00

The White House released its proposed 2010 budget and it contained some good news—most notably, ending abstinence-only sex education as we know it—and small funding boosts for Ryan White and the Centers for Disease Control. But AIDS advocates were largely disappointed. Both global AIDS spending and housing for people with AIDS domestically was flat-funded, and the White House is continuing the federal ban on syringe exchange funding.

“AIDS advocates can’t keep giving Obama a pass on his lack of movement in fighting the AIDS epidemic,” said Housing Works President and CEO Charles King.

AIDS Housing

Housing Opportunities for People with AIDS (HOPWA) was flat-funded at $310 million, though in a call with advocates a White House official claimed that the program would receive a slight increase.

“This was absolutely not an increase,” said National AIDS Housing Coalition Executive Director Nancy Bernstine. “With the shrinking affordable housing stock going down and the number of new HIV infections going up, for all intents and purposes, we look at this as a decrease in funding.”

Housing for people with AIDS is crucial to improving health outcomes. A study released out of Chicago this week revealed that people with chronic diseases who are stably housed have 29 percent less hospitalizations than their homeless counterparts.

Wayne Starks, a New York City AIDS Housing Network leader, who lives in HOPWA-supported housing, agrees.

“How does President Obama expect homeless people with AIDS to be able to survive without housing? The reality is that the government pays for our housing one way or another–if not it’s not in stable and secure housing that HOPWA supports, it will be in shelters, emergency rooms or prisons and jails,” Stark said. “Housing for people with AIDS means being able to take your medication, keep doctor’s appointments and stay safe.“

Evidence-based?

In addition to a $54 million increase to the Ryan White CARE Act and $53 million to the CDC HIV Budget, the only other shining lights of the budget were the removal of funding for abstinence-only sex education and redirecting $110 million to “pregnancy prevention” programs.

And although the White House stated the president’s commitment to comprehensive sex education, the focus on “pregnancy prevention”—as opposed to all the reasons people should be having safer sex—troubles advocates. The emphasis ignored the many teens who have non-heterosexual intercourse but are still at risk for STDS.

“HIV advocates should be a little concerned this funding doesn’t include any language around HIV prevention,” said Bill Smith, Sexuality Information and Education Council of the United States Vice President of Public Policy. “Teen pregnancy is absolutely a concern, but the President has missed an opportunity to develop a program that educates teens on preventing STDS, including HIV, and developing healthier relationships.”

Also troubling to Smith is that while 75 percent of that funding must be used for evidence-based, comprehensive sex education, the rest can be used for unproven methods.

“The bottom line is there’s some concern that this pot of money is available to noncomprehensive interventions,” Smith said. “The good news is that the Administration has fulfilled its promise to end abstinence-only education. We have killed a significant program with a significant constituency,” he said.

Unfortunately, while Obama passed over Pelosi and friends to make this happen, he is unwilling to support another evidenced-based program, syringe exchange.

“We know these programs have worked in New York City, which is why both the city and state support them, but the federal government is behind the times,” said Hiawatha Collins, a leader in VOCAL-NY Users Union. “Even though President Obama promised to bring change to Washington, he’s taking the same approach as his predecessor when it comes to investing in programs rooted in science instead of ideology. We need his active support working with Congress to end this harmful and ineffective policy.”

Global AIDS Funding

Global AIDS activists were just as disappointed. Obama’s budget contains virtually no new money for fighting AIDS, tuberculosis and malaria. The President’s Emergency Plan for AIDS Relief needs $9 billion to reach the legislation’s goals, but is only receiving $4.5 billion (a 2% increase from 2009). And the Global Fund needs $2.7 billion to prevent cuts to lifesaving grants, but received exactly what it got last year: $900 million.

“Obama committed on the campaign trail to making sure that these programs would receive their fair share. He’s broken that promise,” Health GAP Organizer Kaytee Riek said in a statement.

Kahlo Benavidez (1986-2009)

Thu, 07 May 2009 09:57:00

AIDS advocates this week mourned the death of Kahlo Benavidez. Benavidez was a courageous activist and early participant in the Campaign to End AIDS who gave his all to AIDS activism and bravely spoke about his HIV status in hopes of educating other young people. Benavidez died at the age of 22 on April 25 at his home in Sante Fe, New Mexico.

As a young multilingual Native American, Benavidez knew he didn’t fit the image that people think of when they think of AIDS. Which made him all the more determined to be open about his HIV status.

“I firmly believe the world we choose to create today benefits the world we choose to create tomorrow,” Benavidez once said.

Those who knew Benavidez remember him as quietly determined and a kind person who was wise beyond his years. When Benavidez became infected with HIV, he jumped headfirst into AIDS activism. He was a member of the Campaign to End AIDS (C2EA) kick-off in 2005, joining a group of people with AIDS who drove from California to Washington, D.C. for the group’s first major summit. Benavidez participation in that event was documented in the film Closer to God.

An old soul

Matthew Kulvicki, the director of Closer to God who traveled with the caravan, said that Benavidez was a calming presence in a group of people that often fought with each other.

“On a contentious trip, he was one of the only people who was universally cared about. He was a deeply caring, loveable guy,” Kulvicki said. “He was 19 years old and was the voice of reason among middle-aged people. Kahlo was like, ‘We have to get this done.’ He was an old soul.”

Kulvicki also remembers Benavidez’s lighter side from the trip, such as when he won an underwear contest in Birmingham, Alabama. “We were all really proud of him!” Kulvicki said.

Benavidez also attended the first Youth Action Institute (YAI) and helped plan the youth rally at the first C2EA summit.

“He was such a good, strong guy, advocating for young people and so open about his status,” said Johnny Guaylupo, who attended YAI with Benavidez.

Benavidez was also a member of the New Mexico group Operation Get Tested and went to Washington, D.C. on March 11 as one of a group of people who met with President Obama’s Director of National AIDS Policy Jeff Crowley.

“He carried himself with a maturity and calmness beyond his years,” said Housing Works National Organizer Larry Bryant. “His leadership, drive, and purpose were all well defined despite his youthfulness and battling HIV and AIDS stigma everyday in New Mexico.”

Benavidez is survived by his partner, his loving mother and three adoring siblings.

Transjustice

Thu, 07 May 2009 09:55:00

In a notable decision last week, a Brooklyn Supreme Court judge ruled that the partner of a transgender woman suing the New York City Transit Authority for harassment cannot be asked “plainly improper” questions about his sexuality. Justice Robert J. Miller established a precedent that, simply because gender discrimination is at stake, transgender people and their partners can’t be subjected to invasive and improper lines of questioning about sexual orientation.

This ruling, which prompted an article in the New York Law Journal, is the first of its kind in the country, and an important milestone in the burgeoning caselaw dealing with transgender rights. Bumpus v. Transit Authority is an important early test of New York City’s anti-discrimination provisions for transgender people. Bumpus sued the Transit Authority under the New York City Human Rights Law, which prevents discrimination on the basis of gender identity and expression.

Statewide, there is no law preventing discrimination against people on the basis of gender identity and expression. (Last month, the Gender Identity Nondiscrimination Act passed through the Assembly, and advocates are hoping it will pass in the Senate this year. GENDA would make discrimination against transgender people illegal throughout the state.)

During a deposition in February, the Transit Authority attorney asked Ms. Bumpus’s partner, “John Smith”: “Have you ever identified as a gay or a queer person?” Bumpus’s lawyers from Housing Works objected and instructed Smith not to answer the question, arguing that the question was “plainly improper,” warranting an instruction not to answer under a 2006 law that established the rules for that taking of depositions.

“We believe that questions with regard to sexual orientation are highly confidential and personal in nature, and irrelevant to the issues in this case. Such questions tend to be abusive [and] they border on harassment,” Housing Works Senior Attorney Armen H. Merjian told the Transit attorney.

Rather than proceed, the Transit Authority canceled the deposition, moved to compel Mr. Smith to answer this invasive question, and even sought sanctions against Housing Works’ attorneys.

Transit argument ‘at best psycho babble’

Bumpus is suing the Transit Authority for violating New York City’s Human Rights Law. In July 2006, when Bumpus waited to take the subway to work, she was subjected to an ugly, ten-minute homophobic and transphobic tirade by a Transit Authority worker, which led two passengers to further harass Bumpus when she got off the train. When Bumpus tried to complain to an MTA supervisor, the supervisor repeatedly referred to Bumpus as “sir” after she clearly identified herself as a woman.

Last February, Bumpus said that her two-year relationship with her partner had suffered because of the discrimination. The Transit Authority argued that because of Bumpus’ testimony, they should be allowed to “explore [Bumpus’s partner’s] perceptions and attitudes surrounding his identity and sexual orientation. Sensitively to a partner’s experience undoubtedly reflects a level of emotional intimacy, such context is essential to understanding how a troubling event might affect a relationship…”

The Transit Authority compared the situation to that of an interracial couple and argued, “in a case involving a black female plaintiff, whose white male husband has alleged loss of consortium damages, fair questions might probe….whether the husband harbored any race-based assumptions about the nature of intimacy with a black woman.”

Miller summarily dismissed this argument, saying it could, “at best, be described as psycho babble and, at worse, described as allowing an inquiry that buttresses and supports societal stereotypes about various groups of people.”

Merjian was overjoyed by Miller’s ruling.

“We were dismayed that the Transit Authority attempted to ask patently improper questions in an attempt to intimidate the witness,” Merjian said. “And we’re pleased that the court has dismissed the Transit Authority’s argument as nothing more than psychobabble.”

photo credit: http://www.flickr.com/photos/phrenologist/2885283313/

AIDSWatching the White House

Thu, 30 Apr 2009 23:18:01

In a town hall-style meeting Monday, the ever-accessible White House Director of Domestic AIDS Policy Jeffrey Crowley answered lots of questions and expressed a desire for feedback from people with AIDS; however, he didn’t have much to show on the AIDS front from Obama’s first 98 days in office.

The meeting with Crowley was one part of the National Association of People with AIDS (NAPWA) annual AIDSWatch lobby day. More than 300 people with HIV/AIDS from throughout the country came to D.C. to lobby Congress and learn about AIDS policy issues.

“We’re off to a good start,” Crowley told the group that gathered at the town hall meeting to ask questions about health care, housing, stigma, syringe exchange and other important AIDS policy issues. But in terms of specific AIDS accomplishments, Obama’s only concrete effort was the Act Against AIDS Campaign coordinated by the CDC in conjunction with the White House.

What are we waiting for?

Most AIDS advocates are willing to give Obama the benefit of the doubt and agreed with Crowley’s decision to focus on health care reform before launching into developing a National AIDS Strategy and Ryan White reauthorization.

“We’ve seen some good movement going forward, but 100 days is not a lot of time,” said Coordinator of the U.S. Positive Women’s Network Naina Khanna. ““We look forward to seeing more progress on all fronts, including the National AIDS Strategy and health care reform.”

However, in the world of strange bedfellows, the AIDS Healthcare Foundation and Housing Works both agreed that Obama needs to step up commitment to tackling the HIV/AIDS epidemic.

“We’re asking for leadership,” said AHF Executive Director Michael Weinstein. “We’re concerned this is kicking the can down the road.” AHF has launched a video campaign discussing presidential inaction on HIV/AIDS and orchestrating a write-in letter campaign.

Said Housing Works President and CEO Charles King. “Jeff [Crowley] was acting as an apologist for the Obama administration and he said to be patient. But I don’t think think this is the time to be patient and just wait for things to happen.” King also expressed frustration with Crowley’s statement at the meeting about non-AIDS related causes Obama has championed, such as closing Guantanamo Bay. “While I’m happy Obama is championing progressive causes, this isn’t going to end the AIDS epidemic.”

Housing Works had called for a completed National AIDS Strategy within the first 100 days of Obama’s presidency, a deadline that passed this Wednesday. Housing Works is also against extending the flawed Ryan White CARE Act another three years. Housing Works is also calling on the Obama administration to put pressure on Congress to lift the federal ban on syringe exchange.

The White House website calls for an end to the federal ban on syringe exchange, but Obama has never spoken publicly about lifting the ban, and hasn’t urged Congress to take the rider out of the 2010 appropriations bill.

“I understand where the White House is coming from and where Congress is coming from, but in terms of patience for people’s lives there’s only so much patience you can have. What other population would be told to be this patient?,” said Harm Reduction Coalition Executive Director Allan Clear.“The White House is unwilling to spend any political capital pushing the issue.They’re speaking out of both sides of their mouths at this moment and clearly are not acting on the science.”

Watching and tired of waiting

AIDS activists had a chance to vent some of their frustrations before the town hall with Crowley. Sponsored by NAPWA and the Campaign to End AIDS, the rally was entitled “We’re watching—and tired of waiting.”

The urgency of the epidemic was clear at a rally earlier that day. People from all across the country gathered at Freedom Plaza where they and spoke of different issues impacting their communities and the need for more grassroots support. They held signs from the states they hailed from and wore shirts with American flags that said “We’re watching—and tired of waiting.”

Puerto Rican AIDS activist José Colon spoke about the epidemic in Puerto Rico and the need for more grassroots involvement in stemming the epidemic. Puerto Rico’s AIDS service system is a perpetual mess, and the Puerto Rico Health Department has been audited by the U.S. government for misuse of Ryan White CARE Act dollars.

Ralliers also focused on Washington D.C.‘s AIDS epidemic and the recent report that three percent of the city’s population is HIV-positive. Ja’Mai Edwards, a D.C. resident, spoke about how she and her four children are on a housing waiting list in D.C. and are four months from being kicked out of their home.

“I don’t know what avenues to take. I know they’re trying, but we have only four months,” Edwards said. “I spoke about how housing is my prevention. Without housing, how am I going to take my medication? It’s stressful, too, not to know if you’re coming or going.”

Khanna spoke about the need for health care reform.

“We need to reframe the conversation about health care access, and to make sure that people living with and affected by HIV and AIDS are part of that discussion,” said Khanna, who is HIV-positive.,” said Khanna, who is HIV-positive.

ETHA briefing

In addition to some 150 lobby visits, another AIDSWatch highlight was a briefing Wednesday about the Early Treatment for HIV Act (ETHA) by the House co-sponsors Reps. Eliot Engel (D-NY) and Ileana Ros-Lehtian. The duo, along with a representative from Nancy Pelosi’s office spoke about the convoluted nature of the health care system, and how people have to be sick to qualify for care.

While ETHA’s chances of passage are better than ever, as an alternative, ETHA could be included as language in health care reform. As health reform plans are drafted, one of the options is expanding the number of people who can access ETHA.

“ETHA’s not a silver bullet, and there are lots of different ideas that are important to get out there as Congress works on health care legislation,” said AIDS Foundation of Chicago Vice President of Policy and Communications David Munar.

Read more about how people with AIDS will be affected by different health care reform proposals.

Failure of Principles?

Thu, 30 Apr 2009 20:12:01

On Sunday the board of the National Association of People with AIDS (NAPWA) met to discuss how to move members of the pharmaceutical and AIDS industry off of the NAPWA board of trustees and make the board entirely run by people living with HIV/AIDS. But no changes were made to board policy, and many—notably, two high-profile veterans of AIDS activism—remained deeply concerned about NAPWA’s ability to change the way it does business and effectively represent people living with HIV/AIDS.

The launch of the Denver Principles Project this year was supposed to represent a new beginning for NAPWA, which is hurting for both membership and political direction. When Housing Works President and CEO Charles King endorsed the Denver Principles Project last month, he said that NAPWA Executive Director Frank Oldham and Board Chair David Munar assured him that they would work to push back pharmaceutical and corporate industry influence on the board. They wrote in a letter, “We also believe that NAPWA would benefit from establishing an industry advisory council, one that prohibits industry representatives from serving in a legal or fiduciary role as a member of NAPWA’s board of trustees. We expect NAPWA’s board will agree to amend our by-laws accordingly.”

According to those who attended Sunday’s board meeting, however, the issue of pharmaceutical and corporate influence was discussed, but no action was taken. “Board members are reluctant to focus on member-driven priorities and pull back from grant-driven priorities,” said board member Larry Bryant, who is also director of national organizing at Housing Works.

Oldham told the Update that he doesn’t see NAPWA making significant changes. He said that NAPWA will make more financial contributions to ensure that more low-income PWAs sit on the board and that NAPWA will continue to ensure that a majority of its board members are people living with HIV. But he also said that NAPWA needed the support of a broad coalition to be effective.

“We need the private sector, the government sector and the community to work together,” Oldham said.

King disagreed, saying that there are other organizations that already play that role. “Ostensibly the National Association of People With AIDS is about people with AIDS, and _not _the government or the private sector,” King said. “What I’m most disappointed about is that the Denver Principles Project is an opportunity for NAPWA to maintain relevance for PWAs and NAPWA is frittering that opportunity away.”

Sean Strub, founder and former publisher of POZ Magazine, which partnered with NAPWA to launch the Denver Principles Project, agreed with King that NAPWA needs to change the way it does business. Strub said that because many organizations, and NAPWA in particular, rely almost entirely on pharmaceutical money and government grants, they are unwilling to challenge the status quo. “For years NAPWA’s business model has been fairly flawed,” he said.

Time to grow?

The Denver Principles Project has shown some promise, adding 700 members, 300 paid. Before the project started, NAPWA had less than 500 paying members, although a database of 20,000 people. Its goal is to have 100,000 new members. The project is based on the original Denver Principles, which was written in 1983 by PWAs and stated rights and responsibilities for people to be in control of their own health care and lives.

Oldham said the Project needs time to be successful. “Even the most noble efforts to revitalize the AIDS Community like the Campaign to End AIDS , and the NAPWA/POZ Denver Principles Project take much more time and effort to attract thousands and thousands of supporters. It’s really about long-term dedication and commitment. Trying to accomplish these goals in only two or three months, or even one year is just unrealistic.”

Strub is behind the project. He hopes it will energize PWAs around issues critical to ending AIDS. “In Washington, there’s a lot of different groups that claim to represent people with AIDS, but there’s not cohesive leadership. A lot of it has to do with the institutionalization of AIDS. Employees have to be paid, institutions need to be fed. And on some people’s part there’s a sense of complacency,” Strub said.

King sounds less optimistic about the future. “When I endorsed the Denver Principles, I was assured that NAPWA’s governance and empowerment and PWA members, beginning with this week’s board meeting,” he said. “Clearly they haven’t taken any steps. This leads me to question how serious the NAPWA board is about revitalizing the Denver Principles and improving the lives of PWAs.”

Action Alert: Tell DHS to Use Stimulus Dollars for HIV Services!

Thu, 30 Apr 2009 18:33:00

Mayor Bloomberg just released his draft plan for the Homelessness Prevention and Rapid Re-Housing Program (HPRP), which is part of the stimulus package signed into law by President Obama. The City will receive $74 million in federal funding that must be spent within the next three years.

Although homeless New Yorkers, including people with HIV/AIDS, receive services from different City agencies, the vast majority of the stimulus money may stay at the Department of Homeless Services (DHS). The DHS needs to hear that a portion of those funds should go to homeless people living with HIV/AIDS!

The HPRP money could restore approximately $6 million in proposed city budget cuts to homelessness prevention among people with HIV/AIDS. Send comments to DHS urging them to share HPRP funding with HRA/HASA! The public comment period is open from now until May 11!

Key points for letters
• Share Resources: DHS should share $6 million of the HPRP funds with HRA/HASA in order to restore proposed budget cuts for HIV/AIDS housing. HRA/HASA is where people with HIV/AIDS who are homeless or at-risk of becoming homeless receive housing-related support. Another $1.5 million should be directed to DOHMH for anti-eviction legal prevention services for people with HIV/AIDS.
• Restore Budget Cuts: HPRP funding should first be used to restore proposed budget cuts for current homelessness prevention programs. Specifically, that includes HRA/HASA-contracted supportive housing case management and the Scatter Site 2 program, as well as anti-eviction legal prevention funding through DOHMH.
• Homelessness is already rising among people with AIDS: The number of HASA clients living in commercial SROs or ‘welfare hotels’ increased over 25 percent during the past 18 months according to the monthly HRA/HASA fact sheets. The proposed budget cuts will further increase homelessness among HASA clients if approved.
• Housing = Healthcare and Prevention: Research proves that housing is the foundation for access to healthcare, long-term survival and more effective HIV prevention efforts. Stable housing saves money in the long-term by reducing emergency shelter placements, health care costs and risk behaviors that can transmit HIV.
• HASA clients in supportive housing have complex medical needs: About 80 percent of people with HIV/AIDS surveyed for the NYC HIV/AIDS Housing Needs Assessment reported a history of co-occurring mental health and substance use issues.
• HIV/AIDS disproportionately affect low-income communities of color: 80 percent of new AIDS diagnoses are among African Americans and Latinos, and the poorest neighborhoods have the highest rates of AIDS deaths.

Mayor Bloomberg’s current budget proposal would make two major cuts to HRA/HASA-contracted programs that would increase homelessness among peple with HIV/AIDS. The first would dramatically cut funding supportive housing case management (Scatter Site 1 and congregate) by 50%. The second would completely eliminate Scatter Site 2, a program that helps homeless PLWHAs transition to permanent housing. The budget also fails to continue funding for anti-eviction legal assistance that helps people remain stably housed.

Letters can be addressed to: NYC Department of Homeless Services / 33 Beaver Street, Room 2011 / New York, NY 10007 or emailed to bdistefa@dhs.nyc.gov.

A copy of the draft plan is available at: www.nyc.gov/html/dcp/html/pub/amdhomeconpln2008.shtml

For assistance, contact Sean Barry at barry@nycahn.org or (718) 802-9540, ext 10. Please send a copy of any public comment as well.

Pride, Not Prejudice

Thu, 30 Apr 2009 11:37:01

More than 2,000 LGBT people and their allies gathered in Albany for the Empire State Pride Agenda Lobby Day Tuesday. And while marriage equality clearly brought the record-crowds out, there was also behind the scenes maneuvering around the Gender Identity Nondiscrimination Act (GENDA).

On the same day that Albany legislators entertained LGBT constituents in their offices, the first Senate committee GENDA vote had to be postponed, and it remains unclear how difficult the road to passage will be in the State Senate.

Although GENDA (A.5710./S. 2406), which would protect people from discrimination on the basis of gender identity and expression, was scheduled to pass out of the Government and Investigations committee on Tuesday, the bill’s cosponsor Sen. Tom Duane didn’t know if he had the votes for passage. And as luck would have it, LGBT foe Sen. Ruben Diaz Sr. is on the committee. When Diaz was on the City Council in 2002, he gave an impassioned speech against protections for gender identity and ended up abstaining. It’s unknown if his views have evolved.

“We’ve never talked to Ruben Diaz Sr. about his views on GENDA,” said Duane’s counsel Mark Furnish.

If the committee doesn’t have enough votes to pass GENDA, there are other options for moving it forward. Committees finish at the end of May, so GENDA could be sent directly to the Rules committee, which, Furnish said, has “much friendlier senators.”

“It’s an eternity until the end of session. I won’t say I’m 100 percent sure, but I’m still optimistic we’ll pass GENDA,” Furnish said. “Every time there’s been a civil rights battle, we always seem to come through on the right side of it.”

The Assembly passed GENDA last week in a vote of 97 to 38. Assembly member Deborah Glick said she believed the hesitation by her colleagues in the Senate is more of a political then an ideological question.

“I don’t think it’s a question of support, it’s a question of the Senate coalescing around legislation,” said Assembly member Deborah Gilick. “In the Senate, you have such a narrow nonworking majority and when you don’t have all the Democrats aligned, it’s hard to get a lot done.”

Lobbying friends and foes

On Tuesday, transgender rights activists spoke to their legislators asking them to pass GENDA, marriage equality, and the Dignity for All Students Act, which would prohibit bullying in school.

“Not every Democrat is good on our issues, just like not every Republican is bad on our issues,” Empire State Pride Agenda Executive Director Alan Van Capelle said at a rally. “And they all need to know that when they vote against our bills, they’ll have to tell your nieces and nephews and grandchildren that they voted against equality.”

The need for bipartisan lobbying prompted transgender rights advocates to call on friends, such as Sen. Velmanette Montgomery, pictured above, and foes, such as Assembly member Peter Lopez, who was one of GENDA’s key opponents in the Assembly.

“I wanted him to have a transgender friend,” said longtime transgender activist Melissa Sklarz. In the end, she said, “he said he respected my journey and understood the concept of gender identity, but was hung up on the gender expression part.”

Trans talk

Sklarz said that she is proud that ESPA has focused energy and attention on GENDA. For years, GENDA didn’t receive tangible support from the state’s largest LGBT lobby group, but now GENDA receives the full backing of the organization.

“I’ve been doing this work long enough that I remember when the Pride Agenda was the enemy,” Sklarz said, at a Lobby Day caucus around transgender rights. “Now they are our beloved friend.”

Many cities have laws protecting discrimination based on gender identity and expression including Buffalo, Ithaca and New York City. In New York City, Tracy Bumpus, a transgender woman, was able to sue the New York City Transit Authority when she was verbally assaulted by a Transit Authority employee in a subway station because of New York City’s protections.

At the caucus, some 50 transgender activists discussed the discrimination that they face, and why GENDA is important to them. Many said that legal protections are a first step, but that attitudes need to change for full acceptance to emerge, particularly in employment discrimination.

“I’m tired of being characterized as a ‘ho,” said Kiara Bogan, a Housing Works client who is transgender. “I need a job, but I’ve got the outsider status stuck on me.”

No Time For Black Gay Men?

Thu, 23 Apr 2009 18:56:00

The Centers for Disease Control and Prevention’s first national HIV/AIDS public awareness campaign in more than a decade kicked off this month with the Act Against AIDS Campaign. The campaign included a “9 1/2 minutes” public awareness push, using the fact that a new infection takes place every 9 1/2 minutes to call the country’s attention to the epidemic.

But what’s really groundbreaking about the CDC effort is that it includes a $10 million, five-year partnership with 14 African-American groups that have not always been seen as leaders in fighting the AIDS epidemic.

While this campaign is a welcome step, there is some skepticism that many of the funded groups will deal effectively with the root causes of HIV, particularly among black gay men. None of the groups receiving funding are targeted specifically towards black gay men.

According to CDC, of the 27,107 reported HIV infections among African-Americans in 2006, 42 percent were among men who have sex with men and 26 percent were among women who have sex with men. (The remaining third was intravenous drug users and men who have sex with women).

Myisha Patterson-Gatson, director of mobilization for the Black AIDS Institute, which is providing technical assistance to all the grantees, acknowledged that some of the funded groups need “HIV 101.”

“I would be lying if I said it wasn’t a challenge to get past some of the homophobia in the black community,” said Patterson-Gatson. “Our groups are in different places. Some of the groups are at an ‘HIV 101’ level. Through technical assistance, we try to go deeper. Just as AIDS won’t be solved without the black community’s involvement, we won’t solve this disease until the stigma and homophobia are addressed.”

Groups such as Phi Beta Sigma and the NAACP said that they do not specifically seek to target the black gay male population. As NAACP Vice President of Advocacy Hillary Shelton told the Update, “We don’t separate gay men from everybody else.”

The funded groups include 100 Black Men of America, American Urban Radio Networks, Coalition of Black Trade Unionists, Congressional Black Caucus Foundation, National Action Network, National Coalition of 100 Black Women, National Council of Negro Women, National Association for the Advancement of Colored People, National Medical Association, National Newspaper Publishers Association, National Organization of Black County Officials, National Urban League, Phi Beta Sigma and the Southern Christian Leadership Conference.

‘We have 14 groups that we have to hold accountable’

The Act Against AIDS Campaign is a collaboration between the CDC, Health and Human Services and the Black AIDS Institute. The CDC is providing groups funding to hire staff to provide outreach through their national affiliates and online communication.

“We found that within the traditional black groups there was a lot of will, but a lack of resources,” Patterson-Gatson said.

The African-American arm of the Act Against AIDS Leadership Initiative began with a formal application process and ten of the 14 groups were recommended to the CDC by the Black AIDS Institute, a national organization that works to engage mainstream black organizations in the fight against AIDS.

Each group will organize its own education and public awareness campaigns for its constituents. Phi Beta Sigma, a historically black fraternity, has committed to testing 15,000 people in six months and each chapter will be talking about HIV prevention as part of their regularly scheduled activities. The National Council of Negro Women is hosting a series of “chat and chews” across the country for their 30,000 members to talk about domestic violence and HIV/AIDS. The NAACP will use its membership campaigns to promote HIV/AIDS awareness.

“The CDC sees new energy and a new administration, and they’re realizing that they can think more creatively with a new administration,” said Dazon Dixon Diallo, the president of SisterLove, an Atlanta-based women’s AIDS organization.

The next phase of the campaign will target Latino-Americans, who make up 18 percent of new infections, even though they only make up 15 percent of the U.S. population.

And even the skepticism over some of the stakeholders is mixed with hope. “The good news is they have five years to get it straight,” Dixon Diallo said. “And we have 14 groups that we are able to hold accountable.”

Not Going Down Without a Fight

Thu, 23 Apr 2009 16:21:00

Restoring cuts to supportive housing for New Yorkers with AIDS won’t happen without a fight. With the clock ticking, advocates are looking to the Mayor to use federal stimulus dollars—and are hoping for an assist from New York City Council.

“The administration and the Council has to have the will to prioritize reducing homelessness in New York City,” said New York City AIDS Housing Network (NYCAHN) Director Sean Barry. NYCAHN held a faux funeral procession last Friday outside the Human Resources Administration and City Hall to demand that Mayor Bloomberg restore cuts to HIV/AIDS Services Administration (HASA) supportive housing.

Advocates are eyeing a piece of the $74 million in federal stimulus funding called the Homelessness Prevention and Rapid Re-Housing Program to prevent some of these AIDS housing cuts. The funding was allocated to the City by the Department of Housing and Urban Development (HUD) and will be administered through the Department of Homeless Services (DHS).

The cuts to AIDS services are relatively small in dollar amount, though not in impact. One Bloomberg proposal would completely eliminate the Scatter Site 2 program, which helps homeless PLWHAs transition to permanent housing. A second proposal would slash supportive housing (congregate and Scatter Site 1 programs) staff in half. Advocates are proposing different options to the Mayor regarding how to save these crucial programs. The total cost of both of these programs is less than $6 million

HRA acknowledges value of Scatter Site?

In the past HRA staffers have stuck to the party line that HASA case managers and community case workers have “duplicative roles,” but in a meeting last week with advocates, HRA Commissioner Robert Doar stated that the two programs “compliment” each other.

“It was great to hear that Commissioner Doar realizes that both programs do valuable work,” said Housing Works Director of New York Policy and Organizing Kristin Goodwin.

DHS, meet HRA

Restoring the housing cuts is an uphill battle. The Mayor has already spent one billion dollars of federal Medicaid stimulus dollars filling up budget holes unrelated to health care. In a forum with the supportive housing advocates Monday, a DHS representative seemed skeptical of advocates’ idea to use the HUD funding to stave off cuts to case management for people living in supportive housing.

“We’re trying to serve as many people as possible, not so much to identify specific subpopulations [that could use the funding],” said Ellen Howard-Cooper, DHS deputy commissioner of prevention said at a meeting of supportive housing providers Monday. She was responding to a question about a small portion of federal Homeless Prevention and Rapid Re-Housing Program (HPRP).

The HPRP funding is intended to reduce homelessness and will be allocated by DHS to other city agencies. Deputy Mayor Linda Gibbs has the final say on how to spend federal stimulus money for homelessness prevention. At the Monday meeting of supportive housing providers, DHS said it wouldn’t announce publicly which “sisters agencies” would be receiving the funding until May. And a DHS staffer’s response to a question about using the funding for restoring Scatter Site funding was vague.

AIDS advocates are also calling on the Department of Health and Mental Hygiene to use HHAP funding to invest $1.5 million in eviction prevention legal services for low-income people with AIDS. DOHMH is receiving funding from the HPRP and is considering using some funding for this purpose.

“Of all of the cuts, I’m most optimistic that this will be restored,” Barry said.

Calling on Council

Advocates are also calling on City Council to take an active role in restoring cuts and demanding accountability for stimulus funding.

“There are billions of additional dollars coming into the City. The Council needs to speak up and have a say where this money is going,” Goodwin said.

The City Council has stated its concerns over cuts to supportive housing.

“We have had ongoing discussions with the Administration about stimulus funds that have already been secured and announced. However, we don’t comment on the specifics of budget negotiations while they are ongoing,” said City Council Deputy Press Secretary Anthony Hogrebe. “Potential cuts to case management in Scatter Site housing remains a concern for the Speaker. We’re currently exploring whether stimulus funds could be used for this purpose, and if not we’ll continue to look for other means of minimizing those cuts.”

What Are You Waiting For?

Thu, 23 Apr 2009 13:21:00

Washington, D.C. is different this year and so is AIDSWatch. This Monday, April 27 through Wednesday, April 29 marks AIDSWatch 2009, the National Association of People with AIDS (NAPWA)‘s annual lobby day: Hundreds of people living with HIV/AIDS from around the country meet up in Washington, D.C. to lobby Congress—about legislation that, for the first time in eight years, actually has a chance of being signed into law.

Top priorities this year include lifting the ban on federal funding for syringe exchange and pushing the Early Treatment for HIV Act (ETHA). On Wednesday activists can attend a Congressional Briefing on ETHA to hear firsthand from bill sponsors Reps. Eliot Engel (D-NY) and Ileana Ros‐Lehtinen (R-FL). ETHA would expand Medicaid access for people with HIV, so people get health care before they get sick.

Activists aren’t just going to sit back and wait for politicians to do the right thing. At a kick-off rally at 1:30pm at Freedom Plaza called “We’re Watching—And Tired Of Waiting!” dozens of activists from throughout the country will hold leaders accountable for ending the epidemic in both Washington, D.C. and throughout the country. The diverse group of speakers will address the need for the involvement of people living with AIDS in crafting a National AIDS Strategy and a D.C. AIDS strategy. The rally is organized by the Campaign to End AIDS and NAPWA.

“We need our elected officials to hear us loud and clear that we’re going to hold them accountable,” said Housing Works National Field Organizer Larry Bryant.

The rally will also promote NAPWA’s efforts to renew the Denver Principles. The Denver Principles Project is an effort by NAPWA to empower and connect people living with HIV/AIDS. The movement renews the Denver Principles that were created 25 years ago by HIV-positive activists who demanded respect, dignity and a say in their health care. The Denver Principles Project will combine individual voices of PWAs to form a collective and powerful single voice.

AIDSWatch is just a few days away, but it’s not too late to get involved! You can still register online or when you arrive in Washington. Visit NAPWA’s website for more information.

It’s on the A-GENDA

Wed, 22 Apr 2009 15:11:00

The New York State Assembly passed the Gender Expression Non-Discrimination Act (GENDA) for the second year in a row on Tuesday in a vote of 97-38. Advocates who have worked on this bill are extremely optimistic that the Senate will pass the legislation this year, finally making discrimination on the basis of gender expression and identity illegal in New York. The bill passed after a 15 minute debate (as opposed to the hour and a half last year).

Transgender people would particularly benefit from the law which bans discrimination in housing, employment, credit, public accommodations and other areas protected by the state human rights law. “The experience of transgender individuals, and the discrimination they face, are unique, and should be specifically identified and unambiguously rejected in our State’s civil rights laws, just like discrimination based on age, sex, sexual orientation, religion, race, disability, or ethnicity,” said Assembly Member Richard N. Gottfried, sponsor of the Assembly bill. A.5710. Senator Tom Duane sponsors the Senate companion, S. 2406.

Although the fight for marriage equality has grabbed mainstream headlines this year, passing GENDA is another important issue for LGBT activists and one we are likely to win. While three Senate Democrats are against GENDA, New York Transgender Rights Organization (NYTRO) Director JoAnne Prinzavelli said she is confident that the there are at least four Republicans in support of GENDA to offset them. “I don’t want to say who because I don’t want to upset the apple cart,” Prinzavelli said.

Right-on Republicans?

Republicans have already shown their willingness to support the bill. In the Assembly, one-third of Republicans voted in favor of GENDA both this year and last year. Last year, during the contentious debate, Republican Assemblymember Joel Miller gave one of the most persuasive arguments for passing GENDA. “As a dentist, if a patient told me he was in pain, it’s my job to understand he’s in pain,” Miller said last June. “It’s time to recognize the human experience is supposed to recognize all kinds of experiences and that people of transgender experience are facing more hardship than those who think they will be hurt by this new law.”

The bill must get through the Investigations and Government Operations committee before going to the Rules committee. Activists are lobbying those members during Empire State Pride Agenda’s lobby day on Tuesday, April 28. And Duane said he’s going to push GENDA’s introduction in the Senate.

“Bringing GENDA to the floor of the Senate, six years after the passage of SONDA, is a priority for me this legislative session,” Duane said.

A bipartisan effort

The bill actually passed by a wider margin in the Assembly this year than last year, although two more members voted no. One of them was Assembly Member Anthony Seminerio who voted for the bill last year but against it this year.

New York City, Buffalo, Syracuse Ithaca, and Suffolk County all protect individuals on the basis of gender identity. This fact has made it possible for a transgender woman verbally assaulted by a New York City Transit Authority employee to sue under New York City human rights’ law. GENDA’s passage will extend these rights throughout the state.

DOH vs. Ryan White Planning Council : The Saga Continues

Thu, 16 Apr 2009 15:59:00

The ongoing battle between the New York City Department of Health and the Ryan White Planning Council keeps heating up. Last week, the DOH refused to recognize the Council’s rejection of the DOH’s misguided plan to use Ryan White funds to expand access to care for 4,000 New Yorkers living with HIV/AIDS.

The DOH told the Ryan White Planning Council last Thursday that the Council’s resolution “demanding the Department of Health withdraw a case management proposal oversteps the Council’s authority. The letter, signed by Assistant Commissioner of the Bureau of HIV Prevention and Control Monica Sweeney, said that the DOH considers the resolution to be “without effect.”

Although the Council approved the DOH’s “Coordination of Care” plan last July, members were appalled when the actual details of the proposal were revealed this year. The proposal dramatically favored large hospitals over community-based organizations.

The resolution in question, adopted by the full Council by a vote of 19-2 on March 19, demanded that the DOH withdraw the Coordination of Care proposal because “the New York City Department of Health and Mental Hygiene deliberately withheld key components of this service model when it brought forth its ‘care coordination’ model to the Council in 2008 for approval” and because the Request for Proposals is “grossly skewed towards funding for large medical institutions.”

The DOH’s unwillingness to compromise leaves the fate of a $24 million proposal unknown.

“We’re in a gray area and it’s completely unclear what’s going to happen next,” said Matt Lesieur, the Planning Council member who introduced the original resolution. Lesieur said possible next steps might include filing a formal grievance against the DOH or asking the Human Resources Service Administration (HRSA), which distributes Ryan White funds, to intervene.

The Ryan White Coordination of Care Proposal is a DOH initiative intended to use Ryan White funds to reach approximately 4,000 New York City residents living with HIV/AIDS who are not linked with AIDS treatment and services. The Planning Council voted overwhelmingly on the proposal in July based on the DOH’s initial summary of the proposal presented to them. But when the full RFP was written, the details were troubling to many Planning Council members.

Many members were outraged by the requirement that in order to be eligible to submit an RFP, agencies must have a caseload of at least 500 patients. And, making it even more difficult for community-based organizations, the RFP stipulates that these numbers could not include Adult Day Healthcare or COBRA case management clients. This requirement prohibited even the largest community-based organizations from applying without partnering with a medical facility and would completely cut out smaller organizations that serve targeted populations.

“The DOH said the RFP is basically the same thing the Council agreed to with more meat on the bones. But the DOH created something with 10 fingers on each hand,” said Housing Works Vice President of New York Advocacy and Organizing terri smith-caronia. “That’s the stalemate they’re in.”

And one of those fingers is a middle finger towards providers that serve targeted populations.

“The RFP doesn’t seem to give allowance to special populations or agencies that serve them. In our case the homeless are cut out, even though research has shown that is where the epidemic is taking off,” said Care for the Homeless Executive Director Bobby Watts. Watts was told by Public Health Solutions that his agency didn’t qualify to apply.

Conflict of interest?

At a meeting of the Ryan White Planning Council Rules and Membership committee earlier this month, some questioned whether voting for the latest Council resolution was a conflict of interest for Planning Council members. Members are supposed to abstain from voting if they have a conflict of interest. Rules and Membership members questioned whether people belonging to agencies and hospitals that already submitted funding requests for this pot of money should have been allowed to vote. The Rules and Membership committee decided that the bylaws of the Planning Council about conflict of interest were too vague and need to be clarified for future instances.

The role of New York City’s Planning Council has swung back and forth over the years. The Planning Council used to play a much more involved role in giving guidance to DOH in how to administer funds. But during a 2003 HRSA site visit, the feds said that the Council gave too much guidance to the DOH.

Under the tenure of Health Commissioner Tom Frieden, the DOH has had a heavy hand in the Planning Council, even trying last year to add extra voting governmental representatives.

The prominent role of the DOH on the Planning Council differs from other large cities. In San Francisco, for instance, no members of government sit on the Planning Council and the administrative work, which in New York is done by DOH employees, is contracted out to community-based organizations based on a competitive bidding process.

Sign Up for AIDS Housing Summit!

Thu, 16 Apr 2009 15:10:00

This June 3 to 5 in Washington, D.C., advocates, researchers, people with HIV/AIDS and politicians will gather at the North American Housing and HIV/AIDS Research Summit IV. Speakers this year include White House National AIDS Policy Director Jeffrey Crowley and Stephen Lewis, the former UN Canadian Ambassador and Secretary-General’s Special Envoy for HIV/AIDS in Africa, who will be delivering the keynote address. (Michelle Obama and Housing and Urban Development Secretary Shaun Donovan also got invites, but we’re still waiting on RSVPs.)

You can register by April 24 and save $75!

The Housing and HIV/AIDS Research Summit is an innovative and influential opportunity for the broader discussion of housing and health. Summit III brought together 225 participants, representing 25 states, the District of Columbia, and three Canadian Provinces, for presentations by over 40 experts on the relationship of housing status and HIV prevention and care.

This year the Ontario HIV Treatment Network, which advocates for good HIV/AIDS policies in Canada, is joining the National AIDS Housing Coalition (NAHC) and the Johns Hopkins Bloomberg School of Public Health in sponsoring the three-day summit. Prominent Haitian AIDS activist Esther Boucicault will also be presenting about the lack of access to housing in Haiti. This international collaboration makes the summit the first of his kind.

“This year’s summit is going to show incredibly strong links between housing and health outcomes that are applicable for people living with AIDS throughout the world,” said Ginny Shubert, of Shubert Botein Policy Associates.

Another big change from last year is that President Obama is now in power (you might have heard). So advocates will also be discussing how to fully take advantage of the new policy landscape in the U.S.

Research you won’t want to miss

The 2009 summit been scheduled to coincide with the release of findings from at least three major studies of the relationship between housing status and HIV health outcomes and costs:

The Housing and Health Study, funded by the U.S. Department of Housing and Urban Development and the Centers for Disease Control and Prevention, specifically to examine the impact of HIV housing supports;
The Chicago Housing for Health Partnership, an examination of the impact of supportive housing for homeless persons living with HIV/AIDS and other chronic illnesses; and
Positive Spaces Healthy Places, the first longitudinal community-based study of the impact of housing on the health of people living with HIV in Canada.

At last year’s summit, researchers presented the Chicago Housing for Health Partnership (CHHP) study that showed people with AIDS and other chronic diseases live longer when stably housed with intensive case management. This study gained nationwide attention in a Wall Street Journal article.

This year’s summit will focus on educating participants to influence housing and health policy and practice in their communities. In addition to the regular sessions, the summit will be preceded by a half-day training institute designed to empower consumers of HIV/AIDS housing and services to participate more actively in the design, guidance and interpretation of research that affects them.

For more information about the summit check out nationalaidshousing.org.

Unstimulating

Thu, 16 Apr 2009 15:05:00

Advocates recently learned that New York City may not have used any of its $1 billion in federal Medicaid stimulus money for actual services to help the poor. The City says it used the money to close up budget holes and refuses to reveal how the money was actually spent.

While New York State has used federal health stimulus dollars to prevent cuts to valuable health and human services programs, Mayor Michael Bloomberg’s office says that federal Medicaid stimulus money was allocated in January to fill budget holes, before the stimulus money was actually authorized by Congress. A spokesperson for Mayor Bloomberg said there is no record of what budget holes the $1 billion in Federal Medicaid Assistance Percentages (FMAP) money was used to fill.

“We knew the FMAP dollars were going to be in place early on so we budgeted for them and made the cuts we did knowing those dollars were going to be there,” said Bloomberg spokesperson Marc LaVorgna. “[FMAP funding is] about a billion dollars, so that is a lot of services saved, including social safety net programs that the City was forced to make due to the impacts of the financial crisis.”

Housing Works’ Director of New York Policy and Organizing Kristin Goodwin says this lack of transparency is deeply troubling. “The City is saving billions in health care through Medicaid, so we think money should be directed towards ensuring that people have the health and social services they need. Instead, the City is using this money for whatever they want, and housing and health care are at risk of big cuts,” she said, adding, “It’s an irresponsible move when the City has drastically cut supportive housing for New Yorkers with AIDS.”

Supportive housing for people living with AIDS is on the chopping block. The lack of stimulus dollars available makes restoring funding for supportive housing for people with AIDS an uphill battle. Bloomberg proposed a $1.8 million cut to case management in supportive housing programs, which would affect Scatter Site I and congregate housing, and it proposes eliminating Scatter Site II housing completely. These cuts would prove devastating to thousands of low-income New Yorkers living with AIDS who rely on these services.

Although the City budgets for 2010 and 2011 account for FMAP savings, a portion of that money has already been spent to fill budget holes in the current fiscal year.

What about other stimulus funding?

An additional $74 million in federal stimulus funding called the Homelessness Prevention and Rapid Re-Housing Program could prevent AIDS housing cuts. The funding was allocated to the City by the Department of Housing and Urban Development (HUD) and will be administered through the Department of Homeless Services (DHS).

Although advocates have been pushing the use of this stimulus funding to restore potential cuts to HIV/AIDS Services Administration (HASA) housing programs, it is unclear if this money will be available for AIDS housing, which is run through the Human Resources Administration. The federal description of the funding would make it a perfect fit to prevent AIDS housing cuts, but those decisions will ultimately be made by the Mayor’s Office and DHS.

Action Alert: Tell Your Senator to Co-Sponsor ETHA!

Thu, 16 Apr 2009 11:30:00

Sens. Chuck Schumer (D-NY) and Olympia Snowe (R-ME) are reintroducing the critically important Early Treatment for HIV Act (ETHA) into the Senate this Monday, April 20. Both New York senators are cosponsoring, but out-of-staters can still call their senators and ask them to get on board!

Call the U.S. Capital Switchboard at (202) 224-3121 to reach your senators, then tell them to contact Snowe and Schumer’s offices to get on board the ETHA train!

In addition to Snowe and Schumer, ETHA co-sponsors include Sens. Kristin Gillibrand (D-NY), Patty Murray (D-WA), Patrick Leahy (D-VT) and Daniel Akaka (D-HI).

This bipartisan bill, introduced in the House last month, would encourage states to allow people with HIV to qualify for Medicaid before they get sick. The bill was first introduced way back in 1999 and reintroduced in 2007. But now with the Democrats in charge, there’s a real possibility that ETHA could gain traction. And more importantly, the principles of ETHA will be on Congress’s radar as it drafts health care reform legislation.

See the letter being circulated below:

BECOME A CO-SPONSOR OF THE EARLY TREATMENT FOR HIV ACT (ETHA)

Dear Colleague:

We are writing to encourage you to join us as a cosponsor of the Early Treatment for HIV Act (ETHA). ETHA gives states the option to extend Medicaid coverage to low-income individuals living with HIV at an earlier point in the course of the disease. Early treatment can make a significant difference in quality of life and health outcomes. Currently, individuals must become disabled by AIDS before they can receive Medicaid treatment and care. ETHA is modeled after the successful Breast and Cervical Cancer Treatment and Prevention Act of 2000, which allows states to provide early intervention access to Medicaid to women with breast and cervical cancer.

We believe that states should be able to exercise the option of providing earlier access to HIV care as a strategy to address the HIV/AIDS crisis. The Center for Disease Control and Prevention (CDC) estimates that approximately 1,106,400 people in the United States are living with HIV or AIDS, with 56,300 newly infected in 2006. HIV treatment has evolved tremendously in the last three decades, however, an estimated 42% to 59% of people living with HIV/AIDS do not receive regular HIV care.

Our commitment to fight against HIV/AIDS has had tremendous results in the United States. Supporting states in their efforts to ensure early access to medical care will continue this commitment and bring additional gains in both individual health and public health outcomes.

Please join us as a cosponsor of the Early Treatment for HIV Act, giving states the option to extend early intervention Medicaid coverage to people living with HIV. If you would like to become a cosponsor of this legislation or need additional information, please have your staff contact Nicole Fiol with Senator Schumer at 4-7392 or Scott Nolen with Senator Olympia Snowe at 4-5344

Sincerely,

Senator Charles E. Schumer
Senator Olympia J. Snowe

AIDS-ing Universal Health Care

Wed, 08 Apr 2009 16:26:00

With universal health care a real possibility this year, AIDS advocates are getting in the game, proposing, endorsing and protesting federal health care reform plans in the hopes that people with HIV/AIDS will finally get adequate health care.

“This is an opportunity to raise the bar,” said HIV Medicine Association Executive Director Andrea Weddle. “We have to make sure the reform system meets the needs of people with HIV and AIDS and that medical systems include coordinated, comprehensive care.”

Weddle is a member of the HIV Health Care Access Working Group (HHCAWG), which has endorsed ten principles any health care plan must contain, including increasing access to Medicaid coverage; facilitating routine, voluntary HIV screening and counseling; and increasing access to care by strengthening Ryan White community-based programs. The group, which includes members from AIDS Foundation of Chicago, Project Inform, and Housing Works, are judging national health care proposals based on how well they meet these ten criteria.

One of HHCAWG’s members, the Treatment Access Expansion Project (TAEP), published an analysis of the plans by Sen. Ron Wyden and Sen. Max Baucus (available at taepusa.org). Baucus’s plan fared best, hitting six of the ten check marks, including eliminating barriers for access to Medicaid and Medicare. Wyden’s plan only hits three of the criteria, though does promote screening for HIV testing.

What about single payer?

While HHCAWG is open to public and private options, a coalition of activists say that a single-payer health care system is the only sensible option.

Wearing hospital gowns with exposed fake butt cheeks, about 30 activists from the Private Health Insurance Must Go coalition rallied outside Rep. Charles Rangel’s Harlem office in the rain Monday, demanding that Rangel, the chair of the House Ways and Means committee, hold testimony on a bill that would provide universal health care.

The group delivered a letter to Rangel demanding that he hold hearings for the United States National Health Care Act (H.R. 676), the only health care bill that would implement single-payer health care. Although Rangel is a co-sponsor of the bill, he hasn’t brought it to committee.

According to the Center for Responsive Politics, Rangel received $123,950 in campaign contributions from HMO/health care services, making him the top House recipient of funds from that group. He also received $81,500 from the pharmaceutical manufacturers.

Single-payer health care would be entirely government-run in the manner of health care systems in Canada and most of Western Europe. The activists argue that health insurance companies provide inadequate coverage and should not be included in a government response to health care. The protestors at Monday’s event jumped through hula hoops signifying the “hoops” that private health insurance plans require.

“My private health insurance is leaving my ass out in the cold,” said Eric Sawyer, an HIV-positive ACT UP New York member who is also a Rangel constituent and a member of the coalition. In addition, Sawyer said, single-payer health care would lessen the disparities in care that Americans with AIDS experience, depending on what state they live in. “The AIDS-specific safety net has not been an effective public health response,” he said.

According to Rangel staffer John Shiner, Rangel hasn’t held hearings on any particular bills. Shiner said while he thought in an ideal world Rangel would probably prefer a single-payer health care plan, he noted, “Representative Rangel is looking for a bill that’s going to pass.”

“Rangel’s job is to look at what is politically possible to do and also what the President wants to do and what members are willing to do,” Shiner said.

Looking at all sorts of options

Housing Works endorses a single-payer health care plan but supports, as an interim step, a progressive plan that provides universal coverage and broadens the public options.

Robert Greenwald, executive director of the Treatment Access Expansion Project, the group analyzing all of the government health care proposals, said that TAEP is open to the possibility of a single-payer health care plan.

“Most people would consider that dead-on-arrival. I don’t,” Greenwald said. “We’re looking at all proposals to see which one is going to propose the most meaningful health care reform.”

Access to AIDS care in the U.S. leaves much to be desired. Despite a mix of Medicaid, Medicare, private health insurance, the Ryan White Care Act, 30 percent of Americans with HIV/AIDS aged 18 to 49 eligible for antiretrovirals went without, according to a 2003 study. And Medicaid and Medicare both only cover people with AIDS when they get sick.

This huge flaw in the system, Greenwald said, is why it is extremely important for any health care plan to include the principles of the Early Treatment for HIV Act (ETHA), which allows states to expand Medicaid to people with HIV and offers substantial subsidies to encourage states to do so.

ETHA was first introduced in 2007, was reintroduced in the House last month, and is expected to be reintroduced in the Senate by Sens. Chuck Schumer and Olympia Snowe shortly.

Bills, Bills, Bills

Wed, 08 Apr 2009 14:30:00

Now that the Albany budget battle is basically done, we can set our sights on less money-oriented—but no less important—legislation that is going through Albany. Here are some key health care and equality-based bills to look out for in the coming months.

The Gender Expression Nondiscrimination Act (GENDA), which would prevent discrimination against transgender people and discrimination on the basis of gender identity, passed in the Assembly last June by an overwhelming and bipartisan margin of 108-34. Now with the Dems in control of the Senate, there’s a better-than-even chance that this overdue bill, sponsored by Sen. Tom Duane, could finally become law in New York State.

“For 30 years the Senate has been our brick wall,” said Melissa Sklarz, a transgender rights advocate who has worked on passing GENDA for more than a decade. “It’s much easier now to come up with a fair-minded majority.”

And for better or worse, the reactionary opposition by some senators to gay marriage might have a silver lining. The Senate may attempt to throw the LGBT community a bone in the form of GENDA.

“[Senators] who might be uncomfortable with marriage might want to do something for the LGBT community, and will show their support by voting for GENDA,” Sklarz said.

The same attitude might also propel another LGBT-endorsed bill, the Dignity for All Students Act, which prohibits bullying in school on the basis of a host of categories, including race, disability, sexual orientation and gender (including gender identity and expression).

The bill passed in the Assembly on Tuesday, and along with GENDA and gay marriage, will be the key lobbying pushes at Empire State Pride Agenda’s Equality and Justice Day in Albany on April 28. Register for Equality and Justice Day

Fighting Unfair Rent

Legislation known as the 30 Percent Rent Cap would close a loophole that makes poor HIV-positive tenants pay astronomical rents, forcing them to live on as little as $11 a day. Housing provided by New York City’s HIV/AIDS Services Administration (HASA) is not subject to the same cap that Section 8 and all federally funded low-income housing programs are.

Because there are short-term budgetary costs—though long-term savings —this fight is expected to be an uphill battle. But Assembly sponsor Deborah Glick said she and Senate sponsor Duane will be educating their colleagues and the bill has a chance to become law this year. “I’m an optimist,” she told the Update in March. The bill (A.2565 and S.2664) was first introduced by Duane and Glick in 2006

The New York City AIDS Housing Network is organizing a lobby day in Albany around the 30 Percent Rent Cap for April 29. Contact Jaron Benjamin at jaron@nycahn.org or (718) 864-3932 for more information.

Testing

Prepare for some drama as the Senate and Assembly work to overhaul Article 27-f, the New York State Health Department’s law that ensures privacy with HIV testing. AIDS advocates are divided on the issue of informed consent for HIV testing.

Legislation (S.3293) that passed through the Senate Health Committee is sponsored by Duane and written by the New York State Department of Health. It is the similar to the bill brought forward last year by Assembly Health Chair Richard Gottfried and former Senate Health Committee Chair Kemp Hannon.

Housing Works, the HIV Law Project and the New York Civil Liberties Union (NYCLU) are among those that worry that the new bill doesn’t go far enough in protecting the information of people who receive HIV tests and in ensuring that people who take HIV tests do so with written, informed consent.

And advocates from National Black Leadership Commission on AIDS, Latino Commission on AIDS, and Harlem United, also oppose Duane’s bill, but because they feel it doesn’t go far enough routinizing testing.

“Senator Duane’s proposed legislation does not go far enough. New York will be missing a critical opportunity to reduce HIV/AIDS infections – and possibly to halt the disease altogether,” said NBLCA President and CEO C. Virginia Fields.

Last year the bill was announced as a “compromise bill” in response to far more dangerous legislation from Assemblywoman Nettie Mayersohn. Mayersohn wanted to allow doctors to test for HIV without telling patients. Both bills stalled last June.

Housing Works has written a series of principles that should serve as the basis of what any HIV testing bill should include. The principles highlight the need to expand testing without eliminating written informed consent.

Also on the HIV testing front, Housing Works is supporting a bill (A. 303) that would require insurers to cover the cost of HIV testing for all patients. This expands access to testing for all people and takes the classism out of HIV testing.Currently, expanding testing efforts can only go so far, since unlike New Yorkers who receive Medicaid, those who receive private insurance can legally be denied HIV tests by their insurers.

Gillibrand PIcks Up Senate Slack

Wed, 08 Apr 2009 13:30:00

With few vocal champions of domestic HIV/AIDS issues in the Senate, New York Sen. Kirsten Gillibrand appears to be making fighting the epidemic one of her signature issues. She’s been talking up AIDS-related legislation and even made an appearance at a Senate hearing on HIV/AIDS prevention funding last week, where she advocated for more prevention dollars in the 2010 budget, as well as the creation of a National AIDS Strategy.

Nonetheless, while Gillibrand’s HIV/AIDS rollout deserves enthusiastic applause, it hasn’t been completely trouble free. In anticipation of the Congressional briefing on HIV prevention in the U.S. , Gillibrand released a report on HIV/AIDS in New York that highlights the disproportionate burden that the disease has on women, blacks and Latinos. But the 11-page report doesn’t mention the word “men” once, and has no mention of gay men or drug users, groups that are also disproportionately affected by the AIDS epidemic in the state. After the report came out, AIDS advocates told Gillibrand’s office that excluding gay men from any report about HIV/AIDS was not okay.

The office responded that the slight was unintended.

“Senator Gillibrand is all too familiar with the impact of the disease on the gay community and those numbers are included in the data from the New York City health department,” Matt Canter, Gillibrand’s communications director said in a statement. “The impact on the gay community is why, in part, she is taking action to provide funding and make treatment more available. However, there is no question that for decades some have tried to think about the disease in strictly gay-straight terms. This has led to a rapid increase in some populations. The report is NOT intended to exclude anyone, but to highlight that all communities must share a sense of urgency in responding to this disease.”

The advocates who planned the forum were willing to accept Gillibrand’s excuse as a rookie mistake, and continue to educate her on the issues.

“For a new senator, for her to be an immediate champion this way should be commended,” said Jen Heitul Yakush, assistant director for Public Policy at SIECUS, the comprehensive sex education group that is a member of the HIV Prevention Action Coalition. The Coalition cosponsored the HIV Prevention in the United States Congressional Briefing with Gillibrand last Wednesday.

Housing Works President and CEO Charles King agreed. “I give her an ‘E’ for effort,” he said. “We hope Gillibrand continues to further her commitment for people with HIV/AIDS. A great way for her to do that is meeting her constituents who are living with the virus.” Housing Works has invited Gillibrand to visit its facilities in New York City.

Building a record on AIDS

Thus far, Gillibrand has a positive record on HIV/AIDS issues. Although she didn’t cosponsor the Early Treatment for HIV Act (ETHA) in the House, she is now a cosponsor of the bill, which is expected to be reintroduced in the Senate shortly by fellow New York Senator Chuck Schumer and Sen. Olympia Snowe. Former Sen. Hillary Clinton was the original sponsor.

At the Congressional briefing, Gillibrand called for full federal funding for the National AIDS Strategy to help coordinate efforts that focus on prevention for those most vulnerable to new infections and provide access to affordable treatment for those infected. The Strategy calls for $1.4 million of federal funds over the next year.

“New York is the frontline for one of the worst epidemics in the history of humankind,” Gillibrand said in a statement. “There has never been a greater sense of urgency to increase our commitment to fighting HIV and AIDS. We need to make critical investments that emphasize early prevention and screenings, and provide access to affordable care to get a handle on this horrible disease.”

And although Gillibrand didn’t mention it in her press release, when she was a representative, Gillibrand also supported allowing Washington, D.C. to use its own funding to support syringe exchange programs. She has not stated if she supports lifting the federal ban on funding for syringe exchange.

And although she didn’t mention it in her press release, when she was a representative, Gillibrand also supported allowing Washington, D.C. to use its own funding to support syringe exchange programs. She has not stated if she supports lifting the federal ban on funding for syringe exchange.

Five Minutes With Jeff Crowley

Thu, 02 Apr 2009 16:44:00

New Office of National AIDS Policy Director Jeff Crowley is definitely committed to developing a National AIDS Strategy but said he won’t “commit to artificial benchmarks” for its implementation.

During a brief phone interview with the Update last week, Crowley responded to a question about whether there will be a National AIDS Strategy in the first 100 day of Obama’s administration by saying, “I can’t answer in the way you want. This is a top priority and we are moving as quickly as possible [but] I won’t commit to artificial benchmarks.”

He added, “Just a couple weeks ago the President signed a budget allocating funding for National AIDS Strategy. We’re going to do it right. We want to bring people living with HIV/AIDS, people outside HIV/AIDS community [and many other groups together].”

Crowley will be speaking at AIDSWatch on Monday, April 27, about his office’s plans for a National AIDS Strategy.

A small but vocal group of AIDS advocates, Housing Works among them, has been pushing the White House to develop a National AIDS Strategy in the first 100 days of Obama’s presidency because of the urgency of the epidemic.

“One hundred days is not an artificial benchmark,” said Housing Works President and CEO Charles King. “President Obama has taken serious steps on all of the major issues that are important to him. But, other than appointing Jeff, he has done absolutely nothing to address AIDS to date. This is absolutely outrageous, particularly given the recent news about the uncontrolled rates of infection among African-Americans living in the nation’s capitol. AIDS is a disaster, and we need more than lip service.”

ETHA not enough

In addition to creating a National AIDS Strategy, Crowley’s top priorities are health care reform and HIV prevention, but he said “there are a million issues.”

As Crowley noted in a recent meeting with members of the Campaign to End AIDS, Obama is committed both to science-based policies and being a uniter and not a divider. “We’ve been challenged in our prevention efforts. The President is committed to following the science and is also committed to bringing Americans together and working with the faith community and other stakeholders,” Crowley told the Update.

Crowley’s appointment to his post got rave reviews, and he’s gotten props for sitting down with so many AIDS advocates. “I’ve been blown away by the support from the HIV/AIDS community,” he said.

Although Crowley’s being briefed on all AIDS policy issues, his particular expertise is health care entitlement. Crowley said Obama supports the Early Treatment for HIV Act (ETHA) but Crowley himself believes that ETHA doesn’t go far enough in furthering the administration’s goal of expanding health care to all Americans.

ETHA, which was reintroduced in the House last month and is expected to be reintroduced in the Senate shortly, gives states the options of expanding their Medicaid programs to include people who have asymptomatic HIV. However, ETHA doesn’t require states to provide coverage, meaning that people who live in states that don’t opt in will continue to be without Medicaid coverage.

“What we have observed with many state options in Medicaid is that only a few states may choose to offer any specific option,” Crowley said. “The President believes all Americans should have access to affordable, quality health insurance coverage. He has placed health reform at the top of his domestic policy agenda and this holds the potential to ensure that far more people living with HIV are provided access to stable and reliable insurance coverage by guaranteeing access to coverage in all parts of the country. As part of the health reform dialogue, he believes we must consider ways to strengthen Medicaid”

Giving Good Council

Thu, 02 Apr 2009 16:03:00

On Wednesday, New York City Council Speaker Christine Quinn and the City Council released a response to the Mayor’s Preliminary Budget that was in agreement with AIDS advocates’ concerns about proposed cuts to supportive housing for people with AIDS.

“The Administration has argued that contracted SS-I and Permanent Congregate case managers and HASA case managers are performing ‘duplicative’ services,” the Council’s budget response reads. “However, advocates and providers have cited distinctive differences in the two. HASA case managers provide assessment and access to services and public benefits, while contracted case managers provide more direct psycho-social case management to clients. Concerns were also raised about whether case management transitions would include a thorough assessment and referrals for more intensive case management for HASA supportive clients.”

Advocates, providers, and consumers have rallied, demonstrated and testified nonstop during the past few months, decrying the Bloomberg administration’s point that the case managers are performing “duplicative services.” In recent budget hearings, advocates and providers testified to the truth: HASA case workers and community-based case managers are not performing the same functions, and that HASA case workers won’t be able to pick up the slack. Cutting community based case management will put people with AIDS at risk of eviction and homelessness.

It seems that the City Council General Welfare Committee, headed by council member Bill de Blasio, was listening – at least in part. Although the Council didn’t raise specific concerns about the end of the Scatter Site II transitional housing program, the City Council questions about case managers and the cuts to Scatter Site I directly echoed advocates’ concerns.

In the Mayor’s plan, released in January, the HIV/AIDS Services Administration (HASA) would receive cuts to two different AIDS housing programs. The budget proposes a $3.8 million cut to case management in supportive housing programs, which would affect Scatter Site I and congregate housing, and it proposes eliminating Scatter Site II housing completely.

HASA’s primary—and faulty—argument for cutting case management in community programs is that community-based case managers are providing overlapping services with HASA case workers. In last week’s “General Welfare Committee budget hearing”:http://pending.housingworks.org/news-press/detail/council-grills-hra/, HASA Deputy Commissioner Matt Brune reiterated that point, saying that HASA case workers perform many of the same functions as community-based case managers.

AIDS advocates will continue to fight to make sure that these important issues are brought to the table, and that poor New Yorkers with AIDS continue to receive the care they deserve.

AAIMing for More

Thu, 02 Apr 2009 11:19:00

At a summit for HIV-positive activists and their allies in the South, folks from Tennessee and Georgia joined Mississippi residents to share information and stories about how to improve AIDS services for Southerners living with HIV.

The 4th Annual AAIM for Life Summit was a weekend-long conference, beginning last Friday that took place at Lakeville Cottage, a campsite in Louisville, Mississippi. The event was organized by AIDS Action in Mississippi (AAIM).

Although past summits were focused on people living in Mississippi, broadening participation to people throughout the region helped everyone grasp commonalities. Speakers including Valencia Robinson of AIDS Action in Mississippi and Sarah Young of the Mississippi ACLU spoke about advocacy opportunities for people with HIV. There was also a lot of time for people to discuss problems in their communities and brainstorm strategies for developing solutions.

“People from other states all had the same issues we have,” said James Bender, a field organizer for AAIM, who is HIV-positive and has attended every AAIM summit to date. “Transportation, housing, access to health care and stigma were problems we all shared.”

“The summit was very informative. I learned about the different laws state by state. Some of the things they tell people with HIV that they can and can’t do,” said Shemeka Clayton, an HIV-positive woman from Atlanta.

Hurting for housing

Access to housing for people with HIV and AIDS was a problem among all of the participants but particularly in Mississippi.

Jim Kilderry is from South Haven, a northern Mississippi town. Although Kilderry is HIV-positive and from Mississippi, because of where his county is situated, he receives AIDS services in Tennessee and serves on the Memphis-area Ryan White Planning Council. “Groups there are more of a passive, non-activist, non-advocacy entity,” he said.

Kilderry left the summit charged with a mission: look into private funding for housing for poor people living with HIV/AIDS. “Housing issues are important. People need a standard of living they can live with,” he said.

“People at the summit from Tennessee and Georgia said they can appreciate what they have compared to what’s in Mississippi,” Robinson said. “People in Georgia and Tennessee have supportive housing. They have a whole program called Atlanta Harm Reduction. Here it’s only abstinence-only housing.”

More from Mississippi

Robinson had been working with the Mississippi Department of Health since 2007 to implement low-threshold long term housing for people living with AIDS, putting to work unused federal dollars. But those “conversations have ceased” for the moment, Robinson said. “The State said the community had to come up with criteria for the housing program. Everything we gave to them wasn’t good enough or wasn’t enough. But we’re still having a conversation. We’re going to bring supportive housing back up to the forefront.”

The past year has been a landmark year for AAIM. Members of the group marched from Jackson to Oxford, Mississippi and spearheaded the demand that presidential candidates talk about HIV/AIDS. In addition, members successfully lobbied the Mississippi legislature to implement the state’s first pilot program for comprehensive sex education and also got a bill killed that would force people who transit HIV to register as sex offenders.

City Council Grills HRA

Thu, 26 Mar 2009 17:59:01

AIDS advocates packed the City Council General Welfare Committee hearing Monday, holding up signs reading “De Blasio: Stand Up Against the Mayor’s AIDS Cuts.” Committee Chair Bill De Blasio and his colleagues on the City Council heeded the advocates’ words, grilling the Human Resources Administration for a good half hour about cuts to case management for people living in Scatter Site housing.

Mayor Michael Bloomberg’s 2010 budget proposes eliminating Scatter Site 2 (SS 2) housing and proposes $3.8 million in case management cutbacks in Scatter Site I (SS 1) programs. According to testimony by HRA Commissioner Robert Doar, “due to the redundancy of services provided by HASA case managers and contracted case managers we have decided that we needed to decrease the level of staffing within our supportive housing case management contracts.”

Advocates from Housing Works, Harlem United, New York City AIDS Housing Network and the Supportive Housing Network of New York all testified, arguing that Scatter Site 2 case managers provide a different role than HASA case managers, who primarily serve as benefit managers. “You can reach on-site case managers in the middle of the night, whereas HASA case managers are only available 9 to 5,” said Housing Works Director of Policy and Organizing Kristin Goodwin, who submitted testimony.

Doar and HIV/AIDS Services Administration (HASA) Deputy Commissioner Matt Brune said during testimony that Scatter Site case managers and HASA case managers are both “social service case managers” that perform similar job functions, but that HASA case managers have more stringent job requirements and require a college degree and additional certification.

Although the training level of HASA case managers wasn’t questioned, both advocates and council members were skeptical that the HASA case managers could fill the same role as community-based managers.

“These are people who need a lot of support,” Council Member Gail Brewer said.

““This isn’t a garden-variety cut,” De Blasio said, “We all know when we cut services, there are more cuts in the long run.”

Other funding options

City Council members asked HRA if it can look into other funds to supplement the proposed cuts, which are minor in the scheme of the city’s total budget.

“I don’t think you’ve exhausted all the options,” said Council Member Robert Jackson, who suggested HRA look into funding for the Housing Opportunities for People With AIDS (HOPWA).

The city has extra HOPWA funding available that can be used to restore HASA cuts. However, because HRA oversees HASA, and the Department of Health oversees the federal HOPWA dollars, it’s a challenge to get the branches to communicate.

“Would you commit to look for money in the stimulus funds?” De Blasio asked Doar. Doar said he already had looked, but will “look at it again.”

A spokesperson for HRA said that the federal Medicaid stimulus money is “already in the City budget for its intended purpose to stabilize local government in this financially difficult time and is not available for this purpose.”

A spokesperson for the State Office of Temporary and Disability Assistance didn’t return a call by deadline regarding whether the State will fund Scatter Site case management with stimulus dollars.

In response to another De Blasio question, Doar promised to “immediately change course” if the changes adversely affect people.

A complicated, flawed system

Both Scatter Site programs are funded by the HIV/AIDS Services Administration (HASA). SS 1 programs are supportive housing where the rent is paid directly by the provider. SS 2 programs are maintained by community-based organizations. In SS 2 housing individual apartment leases are in the names of HASA clients, who eventually transition into independent living.

SS 2 housing was developed by the city in 2001 and was envisioned as a joint city/state program, in April 2007, after a lengthy audit the state issued a ruling that it would no longer pay for the case management in SS 2. For a year the city funded it entirely out of its own pockets, but when cut time came, they decided to eliminate the program completely.

The elimination of the SS 2 was not bemoaned since the program itself was flawed, with clients often going into arrears, and providers unable to reach the standards HASA has set. While no one wants SS 2 brought back, many HASA clients benefit from case management that shouldn’t be lost. HASA case managers’ chief priority is acting as welfare benefit counselors, while Scatter Site case managers are often on-site and play the role of psychosocial case managers. And the 600 units of supportive housing are no longer on the market.

“I assumed one day they would eliminate the program, but I figured they would replace it with something else,” AIDS Center of Queens County Housing Director Kevin Blank told the Update.

D.C. Is Dying

Thu, 26 Mar 2009 12:49:00

The grassroots AIDS organization D.C. Fights Back rallied outside Washington, D.C.’s city government offices last Friday, demanding an immediate plan of attack to deal with the District’s AIDS crisis.

Chanting “D.C. is dying!” 40 activists lay in the street pretending to be potholes, charging that the government made fixing potholes a greater priority than addressing HIV/AIDS, which hits three percent of the city’s population. The activists demanded D.C. develop a coherent response to addressing its AIDS epidemic within 40 days.

“Two weeks ago Mayor Fenty declared potholepalooza, an all-hands-on-deck approach to fix the city’s potholes,” said Christine Campbell, Housing Works Vice President of Advocacy and Organizing. “We’re just asking for the same concerted response to address the AIDS epidemic.” (The mayor wants potholes filled within 24 hours.)

D.C. Fights Back’s protest was covered on the Washington Post blog, Metro Weekly and News Channel 8.

Since the Washington Post first reported the new infection numbers last week, D.C advocates have been demanding that D.C. do more to address the rise in infections, including implementing comprehensive sex education in schools, which have already been written. Advocates also are stepping up demands that D.C. end the waiting list for housing for people with AIDS.

Not as bad as it looks?

There has been some backlash to the new report on D.C’s infection rates, including an op-ed by former Washington Post Johannesburg bureau chief Craig Timberg, claiming that comparing the rates of infection to West African countries is misleading. One of Timberg’s claims is that because the proliferation of antiretroviral medication in the U.S., people in the District aren’t dying at the same rates as people in less developed countries.

“Just because the epidemic hasn’t caused the death toll it has in Africa doesn’t mean that we’re not in crisis,” Campbell said. “Yes, we don’t have entire villages being wiped out, but we have neighborhoods and those neighborhoods are hurting.”

Transit Authority Transgender Hijinks

Thu, 26 Mar 2009 12:08:00

On Thursday, lawyers for a transgender woman once again rebutted the New York City Transit Authority (NYCTA)’s absurd claim that it is exempt from the city’s Human Rights law in the case of Bumpus v. New York City Transit Authority, this time on appeal.

As Bumpus’s supporters looked on, Housing Works Staff Attorney Robert Bacigalupi rebutted the specious argument that because the NYCTA is a special hybrid government entity, it is exempt from New York City Human Rights law. That law provides widespread anti-discrimination protections to transgender people, among others. The NYCTA was defending its employee Lorna Smith, who is being sued by Bumpus for gender discrimination.

Housing Works has won this argument before. In February 2008 in a ruling against the NYCTA, Justice Robert J. Miller explained: “The Human Rights Law affords protection to transgender people in New York City. By riding the subway, a transgender person doesn’t become less of a person and lose the protection of the Human Rights Law.”

This case is now almost three years old. In July 2006, when Bumpus waited to take the subway to work, she was subjected to an ugly ten-minute homophobic and transphobic tirade by Smith, which led two passengers to further harass Bumpus when she got off the train. Bumpus experienced more transphobia when she tried to complain to an MTA supervisor, who repeatedly referred to Bumpus as “sir” after she clearly identified herself as a woman.

Housing Works’ legal team filed the lawsuit against the employee for gender discrimination and against the Transit Authority for negligent supervision, training and retention of its employees.

“I am cautiously optimistic that justice will be served,” Bacigalupi said.

Testing 1, 2, 3

Thu, 26 Mar 2009 11:04:00

It took a mere six minutes on Tuesday for Sen. Tom Duane and the Senate health committee to vote to move forward a bill, S.3293, that is intended to increase access to HIV testing in New York State. Despite bipartisan support for the legislation, AIDS advocates are not united in favor of the bill’s overhaul of Article 27-f, the New York State law that ensures privacy in HIV testing.

Though the legislation is sponsored by Duane, it was written by the New York State Department of Health and is the same bill brought forward last year by Assembly Health Chair Richard Gottfried and former Senate Health Committee Chair Kemp Hannon. Last year the bill was announced as a “compromise bill” in response to far more dangerous legislation from Assemblywoman Nettie Mayersohn. Mayersohn wanted to allow doctors to test for HIV without telling patients. Both bills stalled last June.

“[The new bill] is a necessary and vital addition to the way that the health care system in New York State diagnoses, tests and treats individuals with HIV,” Duane said in a statement. “Making testing for HIV/AIDS as normal as taking one’s blood pressure will not only ensure that thousands of HIV-positive New Yorkers learn their status and get connected to care, it will also help to destigmatize the virus and slow its spread. It is equally important that this bill preserves written, informed consent for such testing; ensures critical information is provided to patients prior to HIV testing; and requires post-test counseling that reinforces prevention for those who test negative. Implementing this bill has been a priority for both myself and the State Department of Health and we now look ahead to securing its passage.”

“We want to take this issue out of the hands of legislators like Nettie Mayersohn,” said Tracie Gardner, state policy director at the Legal Action Center, which supports Duane’s legislation. “We appreciate that the Department of Health has weighed in with what works to ensure that more New Yorkers know their HIV status.”

Privacy concerns

While Duane’s bill is not as dangerous as Mayersohn’s legislation, it includes an “opt-out” measure for declining an HIV test. Opt-out testing does not provide the same level of informed consent as the current system. Rather than signing a consent form affirming their desire for an HIV test, patients indicate on a form that they do not want the test. Opt-out testing also means that information is more readily accessible to health departments.

“New York health care providers serve the highest concentration of persons at risk for or living with HIV in the nation. It is therefore important to remove unreasonable administrative and other burdens that compromise efforts to make HIV testing widely available and efficiently administered. However, the streamlining of HIV testing procedures need not – and should not – require abandoning the guarantee of informed consent to individuals regarding the nature and consequences of providing that consent,” reads the NYCLU opposition paper to this bill.

There is also the issue that health departments would be able see patients’ health records and use them to plan programs. Although the data would be aggregate and wouldn’t reveal names, this change is troubling to advocates. “Yes your name will be blinded, but if you’re in a small town where everyone knows everyone, this isn’t going to mean much,” said Housing Works Vice President of State Advocacy and Organizing terri smith-caronia. “This isn’t just about people living in New York City.”

Other opposition

While Housing Works is among the groups that worries the bill goes too far, Harlem United worries the bill doesn’t go far enough. The group bombarded Hannon with phone calls Tuesday morning asking that the bill remove the requirement of pre-and-post test counseling, in order to make the bill more routine.

Action Alert: Tell NY Legislators to Move on Medicaid Reform!

Wed, 25 Mar 2009 17:42:00

Both the State Senate and Assembly understand the importance of Governor David Paterson’s Medicaid reforms. But word on the street in Albany is that the legislators might cave in to pressure from the big health care lobbyists and push back these changes until October, or even another year.

Paterson’s Medicaid reforms would save New York tax payers $2.4 billion and would actually expand health care to poor New Yorkers. The 1199 Healthcare Union and the Greater New York Hospital Association have been instrumental in misleading the public about the reforms. For more information about why Medicaid reform is a good deal for poor New Yorkers with AIDS check out our webpage or read this New York Daily News op-ed by Housing Works President and CEO Charles King.

Call your legislators and tell them change can’t wait! Here’s what you can say: “I’m a New Yorker and I urge (insert name of legislator) to support Governor Paterson’s changes to health care reform this year. Medicaid dollars need to go to preventative care and the poor people who need it. Not to the big hospitals.”

Here’s who to call:

Assembly Speaker Sheldon Silver 518-455-3791

Assembly health committee

Richard Gottfried (committee chair) 518-455-4941
Aileen Gunther 518-455-5355
Amy Paulin 518-455-5585
Andrew Raia 518-455-5952
Charles Lavine 518-455-5456
Crystal Peoples 518-455-5005
Darryl Towns 518-455-5821
David McDonough 518-455-4633
Jack Quinn 518-455-4462
James Bacalles 518-455-5791
James Conte 518-455-5732
Jeffrey Dinowitz 518-455-5965
Joel Miller 518-455-5725
John McEneny 518-455-4178
Jonathan Bing 518-455-4794
Kevin Cahill 518-455-4436
Linda Rosenthal 518-455-5802
Lou Tobacco 518-455-5844
Naomi Rivera 518-455-5844
Nettie Mayersohn 518-455-4404
Patricia Eddington 518-455-4901
Rhoda Jacobs 518-455-5385
Robin Schimminger 518-455-4767
Sandy Galef 518-455-5348
Steven Cymbrowitz 518-455-5214
William Magnarelli 518-455-4826

Senate Majority Leader Malcolm Smith 518-455-2701

Senate health committee

Tom Duane (committee chair) 518-455-2451
Velma Montgomery 518-426-6854
George Onorato 518-455-3486
Hugh Farley 518-843-2188
Kemp Hannon 518-455-2200
Carl Kruger 518-455-2460
John Sampson 518-426-6806
John Fuschillo 518-455-3341
Jeffrey Klein 518-455-3595
George Winner 518-455-2091
David Valesky 518-455-2838
Andrea Stewart-Cousins 518-455-2585
Elizabeth O’C Little 518-455-2811
Antoine Thompson 518-455-3371
Craig Johnson 518-455-2622
Catherine Young 518-455-3563

D.C. In Distress

Thu, 19 Mar 2009 20:46:00

On Sunday, the Washington Post reported that more than three percent of people in D.C. are living with HIV and AIDS. At noon today, Campaign to End AIDS affiliate D.C. Fights Back will hold a press conference and protest outside the offices of D.C. Mayor Adrian Fenty and of the City Council, at 350 Pennsylvania Ave NW, to demand that the D.C. government develop, over the next 40 days, an emergency strategy to tackle the HIV/AIDS epidemic in the district of Columbia.

“The government of the District of Columbia has been hitting the snooze button for way too long,” said D.C. Fights Back co-founder Alex Lawson. “We need clear, visible and vocal leadership from the Council and the Mayor. We need to put more money into testing, into treatment, and into programs used to break down the stigma surrounding HIV and AIDS.”

Lawson was quick to note that he doesn’t blame D.C. AIDS czar Shannon Lee Hader. She has taken the AIDS crisis seriously, Lawson said, and is responsible for authorizing the latest surveillance report. Until Hader’s arrival in 2007, D.C. didn’t have functional surveillance reporting. However, Lawson wants Mayor Adrian Fenty to take a higher-profile role in confronting the epidemic. “We appreciate the mayor has found such a wonderful person to lead the HIV/AIDS institute, but he also needs to take visible and vocal leadership on this issue,” Lawson said. “The report itself states that these prevalence rates are probably higher than three percent. This is an all-hands-on-deck crisis and emergency.”

More than four percent of Blacks in the city are known to have HIV, along with almost two percent of Latinos and 1.4 percent of Whites. Seventy-six percent of the HIV-infected are Black, 70 percent are men and 70 percent are age 40 and older.

Almost 10,000 D.C. residents have died of HIV and AIDS related deaths, since the start of the epidemic. The nation’s capital has an HIV infection rate and an AIDS death rate far above the national average and among the highest in the Western Hemisphere.

“This is a historic epidemic here in this city,” said Housing Works National Field Organizer Larry Bryant. “This isn’t like a bout of malaria that’s affecting us during the summer. We’ve had indecisive leadership. It’s not just about passing out condoms. If we don’t, as a community, stand up a little stronger, this story about the epidemic is going to be buried and the next pothole story will make the headlines.” Bryant is referring to the Mayor’s ‘Potholepalooza’ last week, a pothole-filling campaign that dominated D.C. headlines last week.

Here is the message D.C. Fights Back will be presenting at the press conference today:

This week the District released data showing that 15,120 people, three percent of the District’s residents, are believed to be living with HIV/AIDS-and officials suggested the number is likely far higher. Were we a state, Washington, D.C. would rank first in the nation in HIV rates. Were we a country, the District would rank 23rd in the world between Nigeria and Rwanda in HIV rates. Today, DC Fights Back, a diverse network of people living with HIV/AIDS and allies in D.C., demands that D.C. double the HIV/AIDS budget and within 40 days present a clear, specific, emergency plan, with resources attached, be developed to deal with HIV in D.C.

Today, our eyes are wide open. Today, we are present and not just here. Today, we no longer stand idle as our fellow citizens in D.C. and across the nation continue to be attacked. The situation demands a fresh look at old realities. Centuries of racism and discrimination has resulted in racial disparities in every sector. Poverty, unstable housing, unemployment, social rejection and stigma fuel mental illness, drug use/abuse, and HIV. These are the social determinants of health that affect us all—Black, White, Latino, gay, straight, transgender, immigrant or citizen. We need to unite. We must stop demonizing our brothers and sisters if we are to secure the conditions that promote our health.

It was just a little over two years ago when city leaders were “shocked” and “appalled” to find out that one in 50 D.C. residents was believed to be living with full blown AIDS. The response was a “wake up call” and removal of the Director and some staff of the Department of Health. Our Mayor, our City Council members, and our Public Health officials have issued yet another wake up call. We-who work every day to ensure care for ourselves, our siblings, husbands, wives, partners, friends, lovers, and clients-say “enough.” We are not surprised by the data and we will not be silent. We must move past being appalled by the data to develop a real plan—real strategies to turn this around.

AIDS is not a just a health crisis-it is a political crisis. D.C. is the capital of the wealthiest nation in the world: we will no longer stand by while politicians complain of scarce resources and difficult bureaucracy. If the economic crisis has proved nothing else it has shown that billions of dollars and massive restructuring is possible given the political will: we expect no less for our communities.

Today, our communities are under attack and we will fight back. How can we end the epidemic if our health centers, religious communities, neighborhoods, and media continue to portray those who are positive as bad people? This report shows yet again that centuries of racism and discrimination have resulted in racial disparities in the HIV epidemic-along with those of poverty, unemployment, homelessness, poor educational outcomes, and all of the social determinants of health that drive HIV. How do we make any progress in ending this epidemic when our city’s culture allows racism, sexism and homophobia to thrive?

We Demand:

A doubling of the budget for HIV/AIDS, substance abuse, and comprehensive sex education and an emergency plan that identifies the gaps, describes the services needed to fill those gaps and sets time-bound targets, and cites the funding needed versus what is currently available. We demand this by April 29, 2009 when, during AIDS Watch, activists from across the US will come to Capitol Hill. The eyes of the country will be on D.C. demanding answers as to how we are going to move forward. This emergency plan must include:

1. Universal, proactive voluntary testing and counseling programs to reach all D.C. residents

2. AIDS treatment for every person in need and programs that ensure continuity of care

3. Housing for every person on the HIV housing waiting list, ensuring the likely $5.5 million per year needed through a combination of Federal and D.C. funds

4. Access to high quality substance abuse and mental health treatment as well as expanded harm reduction and clean needle programs to reach all in need

5. Competent, science-based HIV/AIDS education to reach all students, parents, and seniors

6. An inclusive, collaborative process to develop a long term, comprehensive plan to end HIV

7. A campaign to build unity among all residents to fight HIV – an end to the stigma that blames and attacks people for illness.

Failure is not an option. This is a fight our city cannot afford to lose.

Community Orgs Step Up to DOH

Thu, 19 Mar 2009 20:22:00

In a sharp blow to Department of Health Commissioner Tom Frieden’s anti-community agenda, the New York City Ryan White Planning Council voted overwhelmingly Thursday afternoon for a resolution demanding that the DOH withdraw a case-management proposal with unfair eligibility requirements. The structure of the proposal makes it nearly impossible for community-based organizations to compete for $24 million, or one quarter, of all the city’s Ryan White funding.

“The devils are in the details and in this case they were certainly devils,” said Matt Lesieur, the planning council member who proposed the resolution, which passed 19-2, with 10 members abstaining. The planning council members who didn’t vote in favor of the resolution were government and hospital officials. The resolution declared, among other things, that “The New York City Department of Health and Mental Hygiene deliberately withheld key components of this service model when it brought forth its ‘care coordination’ model to the Council in 2008 for approval.”

The proposal in question is the Ryan White Coordination of Care Proposal, a DOH initiative intended to reach approximately 4,000 New York City residents living with AIDS who are not accessing AIDS care and services. Advocates raised concerns back in July before the request for proposal (RFPs) was instituted, stating that the program would duplicate services provided by COBRA case management and would favor large hospitals over community-based organizations.

“I urge Planning Council members, who not only represent their organizations, but also the New York AIDS community, to carefully consider the programmatic and financial implications of adopting a significant paradigm shift in how case management services will be delivered and to exercise their vote honestly, carefully and with integrity,” Housing Works Vice President of Advocacy and Organizing terri smith-caronia said at the July meeting, according to the minutes.

But the Council voted heavily in favor of the proposal then,with 22 in favor and two abstaining. But after the proposal was released, many members were outraged by the requirement that agencies to have a caseload of at least 500. However, making it even more difficult for CBOs, the RFP stipulates these numbers could not include Adult Day Healthcare or COBRA case management clients. This requirement prohibited even the largest CBOs from applying without partnering with a medical facility.

Community outrage

Yesterday’s resolution came after an impassioned comment period from speakers, a “who’s who” of HIV community organization bigwigs, with reps from Harlem United, Housing Works Village Care, Gay Men’s Health Crisis and Bailey House among those voicing opposition. More than 75 people attended the packed meetings.

“I have never believed the rhetoric that the New York City Department of Health systematically redirects funds away from community-based organizations,” said Harlem United President and CEO Patrick McGovern. “However, this formula belies these claims. I urge you to rescind this RFP.”

GMHC President and CEO Dr. Marjorie Hill said that she worried that people with AIDS in the city would be most affected by the proposal, because it limits the choices of where they can receive case management. “I’m not about GMHC or Harlem United or Housing Works. It’s about people living with AIDS in New York City,” Hill said.

No one questioned the inherent worth of the proposal.. “I know it’s a good plan because it’s a copy of COBRA,” said Kenneth Stewart, director of community case management for Village Care of New York.

After the resolution passed, smith-caronia said, regarding the Planning Council’s original decision, “I wouldn’t say it was a breakdown of process but a breakdown of trust. I want to applaud the Planning Council for finally having some cojones.”

What happens next

It is unclear how much impact the Council’s resolution will be able to have. The RFP has already been filed, and hospitals and organizations, including many that spoke out against the proposal, have already applied. However there is a precedent of New York City agencies withdrawing RFPs after hearing community outcry. The Planning Council resolution will also carry weight if community-based organizations decide to file a lawsuit against the city.

At the Planning Council Meeting, Dr. Monica Sweeney, assistant commissioner for the DOH’s Bureau of HIV/AIDS, said she wasn’t able to comment about the RFP. “We’re in the middle of a process. The question and answer time has passed,” Sweeney said.

But in a statement to the Update, the DOH disputed the resolution’s claims:

“Community-based groups are afforded equal opportunity to apply for services under this contract. In fact, the primary objective of this initiative is to promote effective collaboration between care coordinators in the community and medical providers for people living with HIV/AIDS in New York City. This request-for-proposals seeks to leverage more than two decades of CBO experience in case-managing the care of people living with HIV/AIDS. The eligibility rules provide two separate ways for CBOs to apply (outlined in the RFP and supplementary documents): either as a lead agency for one or more partner medical practices; or as the sub-contractor to a medical facility.”

The DOH now has to decide if it will listen to the community input. The DOH, under the direction of Frieden, is increasingly trying to run the show at the planning council. See the Update‘s Frieden Power Grab Averted for more on that.

See the entire resolution vote on by the Planning Council below:

HIV Planning Council Resolution
March 19, 2009

The HIV Health and Human Services Planning Council of New York declares that:
• the recently released Ryan White Part A “Care Coordination” RFP is seriously flawed and far too rigid in its scope of services and staffing patterns,
• Is grossly skewed towards funding for large medical institutions (as demonstrated by a worksheet/formula that biases against community-based systems of care such as COBRA case management and AIDS Day services),
• By redirecting 25% of the Ryan White portfolio towards large medical institutions, it eliminates PLWHAs choice in where they receive their coordinated delivery of care,
• Is inconsistent with the intention of the Council when it approved the “care coordination” service model in 2008, and
• The New York City Department of Health and Mental Hygiene deliberately withheld key components of this service model when it brought forth its “care coordination” model to the Council in 2008 for approval.

Furthermore, in a resolution passed by the Council on July 24, 2009, in relation to the new Care Coordination model, the Council approved the following:

“All providers, up to and including, hospitals, CBOs, clinics, health centers and consortia who have demonstrated the ability to provide the scope of services will be eligible to apply”

The Council declares that such language was disregarded in the RFP and that both the spirit and intent of providing guidance on the Care Coordination model was not followed and disregarded by the grantee, in violation of the Ryan White HIV/AIDS Treatment Modernization Act.

As such, the Council demands that the grantee recall this RFP and not award any contracts based on the “Care Coordination” service model as described in the RFP.

Anticipation in Albany

Thu, 19 Mar 2009 16:52:00

With the behind-the-scenes budget negotiations well underway in Albany, it looks like the Assembly and Senate are maintaining most of Governor Paterson’s Medicaid reforms and proposing some important fixes to Paterson’s so-so social-services budget. These changes include reinstituting funding for job training for HIV-positive people and nixing the cut in the state’s share of SSI payments.

Both the Senate and Assembly have indicated they will reinstate the $1.4 million program that funds job training for HIV-positive welfare recipients. The funding was inexplicably cut by the Governor, even though this $1.4 million program was ranked high on the Office of Temporary and Disability Assistance (OTDA)‘s list of “mission-driven” programs. In last year’s budget hash-out, when the same funding was threatened, AIDS groups won the fight to restore the funding.

“I am thrilled that it looks like this program will be able to continue,” said Frederick Taylor, a Housing Works job training alum who lobbied legislators to continue to fund the program. The successful welfare-to-work program placed 615 poor New Yorkers with HIV/AIDS into employment between 2003 and 2008.

In addition, legislators have indicated that cuts to social services will be restored. Paterson proposed reducing the New York State share of funding to SSI recipients by $84 million. “If Paterson’s ask went through, people on SSI would be living at 80 percent of the poverty line,” said Shelly Nortz, Coalition for the Homeless deputy executive director.

What do the unions have up their sleeves?

But all this secrecy, and lack of public hearings, are leaving health care advocates nervously waiting to see if Paterson’s health-care reforms will stand.

“The general support and the will is there among legislators for the governor’s major health reforms, but it’s been frustrating,” said Lara Kassel, the coordinator for Medicaid Matters, a group that is supportive of Governor Paterson’s Medicaid reforms.

The offices of Assembly health chair Dick Gottfried and Senate health chair Tom Duane didn’t respond to the Update by deadline. Sources say that both legislators are largely in favor of the reforms.

“Obviously the opposing position is out there,” Kassel added. “Their ads are no longer running, but we know they’re still working hard, especially behind closed doors.”

Kassel refers to the Greater New York Hospital Association and the 1199 Health Care Workers Union, which for months ran millions of dollars’ worth of ads misleading New Yorkers about Governor Paterson’s health care reforms. For example, one series of ads blamed Paterson for the closure of two Queens hospitals, when in actuality the state gave the hospitals more than $50 million in state dollars in an attempt to save them.

According to this week’s Crain’s Health Pulse, hospital trade association officials are “increasingly optimistic” about staving off the much-needed changes and then getting fired Director of State Operations Dennis Whelan and State Medicaid Director Deborah Bachrach, both of whom are health-care reform supporters.

Contrary to the misleading ads, the truth is Governor Paterson’s Medicaid reforms would actually expand care for the poorest New Yorkers, while still saving $2.4 billion in taxpayer dollars. (To read more about this campaign, and Housing Works’ opposition, check out the Update‘s Why Did the Lobbyist Chicken Cross the Road?)

Unlike in past years, the Assembly and the Senate aren’t expected to issue separate one-house budgets this session, but instead will negotiate with the governor behind closed doors. The Update will keep you posted.

Sign Up Now For AIDS Housing Summit June 3-5 in D.C.!

Thu, 19 Mar 2009 16:17:00

This June 3-5 in Washington, D.C., prepare for the link between AIDS housing, health care and prevention to strengthen with the North American Housing and HIV/AIDS Research Summit IV. While previous summits were a mostly-U.S. affair, this year will bring incredible input from our neighbors to the north, with Stephen Lewis, the former UN Canadian Ambassador and Secretary-General’s Special Envoy for HIV/AIDS in Africa, delivering the keynote address.

Lewis won’t be the only Canadian in attendance. The Ontario HIV Treatment Network (OHTN), which advocates for good HIV/AIDS policies in Canada, is joining the National AIDS Housing Coalition (NAHC) and the Johns Hopkins Bloomberg School of Public Health in sponsoring the three-day summit.

The 2009 summit been scheduled to coincide with the release of findings from at least three major studies of the relationship between housing status and HIV health outcomes and costs:

The Housing and Health Study, funded by the U.S. Department of Housing and Urban Development and the Centers for Disease Control and Prevention, specifically to examine the impact of HIV housing supports;
The Chicago Housing for Health Partnership, an examination of the impact of supportive housing for homeless persons living with HIV/AIDS and other chronic illnesses; and
Positive Spaces Healthy Places, the first longitudinal community-based study of the impact of housing on the health of people living with HIV in Canada.

Scholarships for the summit are available for past and present consumers of AIDS housing and related services. E-mail or mail the scholarship application to the National AIDS Housing Coalition. The deadline has been extended until Friday, March 26.

Everyone else should sign up now to register before the early-bid deadline of April 24.

For more information about the summit, go to nationalaidshousing.org.

A Test for Prisons

Thu, 19 Mar 2009 15:21:00

The Stop AIDS in Prison Act of 2009 (HR 1429) passed through the House Tuesday, and is moving on to the Senate, despite some serious problems. While the bill gets a thumbs-up for mandating that inmates in federal prisons receive proper treatment, the lack of written informed consent leaves many AIDS and civil liberty advocates unable to support the bill.

“Anyone who is for true informed consent cannot in good conscience support this bill,” said Housing Works President and CEO Charles King.

Introduced by Rep. Maxine Waters (D-CA), the bill seeks to increase HIV testing in federal prisons by providing routine testing, with pre-and-post test counseling to prisoners leaving and entering facilities, as well as testing upon pregnancy or request. The U.S. Department of Justice reported in 2001 that AIDS prevalence among U.S. federal prisoners was approximately three times that of the general population.

The bill was introduced in 2007 and, even without a Senate cosponsor, passed through the Senate judiciary committee, where it stalled. Insiders suspect that the bill stalled either because the Department of Corrections objected, or because Sen. Tom Coburn might have threatened to hold up the bill because it provides comprehensive, condom-teaching sex education for prisoners, something Coburn has opposed in other bills. However, the bill doesn’t provide the condoms to go along with the education.

The bill was actually even worse in its original incarnation years ago, requiring mandatory testing. But Waters listened to input by HIV/AIDS advocates who urged that it include an opt-out provision (so those who don’t want to be tested cannot be punished) and a greater role for counseling. However, Waters didn’t include written informed consent for testing, so prisoners can be tested with only their verbal consent. Plus advocates are skeptical that, in the hierarchical prison environment, opting out will really be an option.

These advocates call written informed consent a safeguard ensuring that institutions—such as prisons—live up to their responsibility of giving people all the information they need in order to decide when and where to get a test, especially when the benefits and risks of testing are not clear-cut. They say that, given the myriad social and legal consequences of an HIV diagnosis, particularly in a prison, HIV testing warrants written, informed consent before it happens.

Dividing line

AIDS groups are divided on the bill. The Americans for Civil Liberties Union shares Housing Works’ position and opposes the bill. The San Francisco AIDS Foundation, the AIDS Action Committee and the AIDS Institute support the bill.

“The bill mandates oral consent, which the AIDS Institute supports. This is a great bill and one I think the community should be able to rally around,” said Carl Schmid, AIDS Institute director of federal affairs.

But Jackie Walker, HIV/AIDS/Hepatitis information coordinator for the ACLU National Prison Project, disagrees, saying that the bill lacks protection for the rights of prisoners. “We are glad there are some provisions to make sure there’s treatment, but the way the bill uses testing as a way trying to address HIV needs to be changed,” Walker said.

More than just testing

Walker noted that the bill also does little to address the real issues of HIV/AIDS among prison populations. Although the bill speaks of prevention education, it doesn’t lift the ban on condoms in federal prisons.

The Justice Act, a bill by Rep. Barbara Lee (D-CA), would allow community organizations to distribute condoms and to engage in sexually transmitted infection counseling and prevention education in federal correctional facilities. But that bill’s gone nowhere since its introduction in 2007, partially because of its emphasis on condoms.

Walker also noted that it is important to dispel the myth that transmission of HIV in prison is rampant. Although there has been little concrete research on the subject, a study of Georgia prisoners published in 2006 showed that 90 percent of those who were HIV-positive got the virus before entering prison, although many didn’t know it at the time.

“We need to look at other types of sexual networks, and shouldn’t view prisons as vectors of disease,” Walker said.

Laura McTighe, director of Director of Project UNSHACKLE, the Community HIV/AIDS Mobilization Project (CHAMP) prison project, agrees that the problems of HIV/AIDS with the prison population stretches far beyond the prison walls. “Often people are first getting diagnosed in prison, but they were infected beforehand,” McTighe said.

As many as one in four people with HIV/AIDS in the United States has been to prison. African-Americans are disproportionately affected by both HIV and the effects of imprisonment. For more information about AIDS among the prison population see the website for Project UNSHACKLE.

photo credit: http://www.flickr.com/photos/seandreilinger/133281596/

Meet Me At the White House

Thu, 12 Mar 2009 21:55:00

A major milestone took place on Wednesday, March 11, the 50th day of the Obama administration: Seven people living with HIV/AIDS from throughout the country met with the president’s top domestic AIDS adviser, Jeffrey Crowley. In the first such meeting since Crowley was appointed, the activist delegation voiced their concerns about the lack of progress fighting the AIDS epidemic in the United States.

The meeting was prompted by a series of planned Stand Against AIDS: 50 Day Report Card rallies that took place on Wednesday in numerous U.S. cities. Activists from local chapters of the Campaign to End AIDS issued President Obama a report card detailing his progress on fighting AIDS.

“The meeting was very exciting,” said Cassandra Ackerman, a person living with AIDS from Columbus, Ohio. “Jeff was very engaged, and he is so well-educated about issues surrounding HIV and AIDS.”

When Crowley heard that the Obama administration was scheduled to receive “Fs” on its commitment to creating a National AIDS Strategy, he asked how the grade could be improved. Advocates asked for a meeting, as well as a time table for creating a National AIDS Strategy. Because of Crowley’s outreach, the Obama administration grades were bumped up to As, Bs and Cs, and one incomplete. See the report card

Chatting with Crowley

The HIV-positive advocates from Washington D.C., New Mexico, Ohio, Pennsylvania and Puerto Rico, as well as Housing Works Director of National Advocacy and Organizing Christine Campbell, spoke to Crowley for more than an hour about major issues of concern: ending abstinence-only education, lifting the needle-exchange funding ban, developing a National AIDS Strategy, and making sure Puerto Rico is included in any health care plan that the federal government develops.

Crowley told the group that the President’s priority for him is to create a National AIDS Strategy. In a statement by Crowley that was read at the rally earlier that day he said:

“The President has also made a strong commitment to developing a comprehensive national AIDS Strategy that includes all federal agencies. The strategy will be designed to reduce HIV infections, increase access to care, reduce HIV-related health disparities, increase awareness, and promote greater investment for ending the HIV epidemic in the United States.

Over the coming weeks, we will consult broadly to develop a strategy. This will include examining how to ensure that a broad range of perspectives are heard and that key populations that are frequently overlooked are engaged in this process. Within a period of several weeks, we intend to announce a process for moving forward and present an initial timeline to guide the process.”

Crowley also said that the administration is committed to maintaining the Ryan White CARE Act and how to incorporate it into the administration’s health care reforms. Crowley has already met with the National AIDS Strategy working group and the AIDS Action Council.

Crowley spoke more tentatively about harm reduction policies. According to Campbell, Crowley said that lifting the ban on syringe-exchange funding is part of “political finagling” and as Obama’s attempts to sidestep the culture wars he may put off taking action on some hot-button issues. He also defended the U.S. decision to reject the term “harm reduction” in a United Nations declaration being negotiated in Vienna. Crowley said the administration didn’t sign on because language wasn’t specific enough and could include the legalizing of heroin.

“We told him, ‘That’s your job. But our job is making sure the things that are important are pushed forward,’” Campbell said.

The Campaign to End AIDS also issued report cards on the efforts in D.C, New York and other cities throughout the country to fight AIDS. Read about their successful Wednesday rallies.

Midterm Report Cards

Thu, 12 Mar 2009 19:58:00

As people living with HIV and AIDS in D.C. were meeting with the White House advocates from the Campaign to End AIDS (C2EA) throughout the country presented report cards to both President Obama and local officials in order to grade their responses to the AIDS epidemic.

The results? While they gave Obama the benefit of the doubt, C2EA chapters were harsher on their city and state officials who have had years to prove themselves. Although Obama got all As, Bs, one C and one incomplete on his progress in creating a National AIDS Strategy and dealing with the global AIDS epidemic, from New York to Norfolk to Jackson to Memphis to D.C., activists doled out Ds and Fs. Better access to housing was a theme that rang true in every corner of the country.

See video of activist Shirlene Cooper explaining why housing is crucial for people with HIV/AIDS:

Stand Up For Harlem from Housing Works on Vimeo.

The center of the epidemic

Before eight activists met with Obama’s domestic AIDS policy director Jeffrey Crowley in D.C., some 100 people gathered at Anacostia Park to grade both the president and the city. Washington, D.C. is the center of the U.S. AIDS epidemic, and this protest was held in a neighborhood disproportionately affected by HIV and AIDS. Speakers included D.C. Fights Back members Larry Bryant, Geno Dunnington, George Kerr and Diane Pleasant; Matt Kavanagh of RESULTS; and Radia Daoussi of the Vineeta Foundation.

The D.C. contingent handed Obama an A for hiring Crowley and a B- for beginning a process to create a National AIDS Strategy, and Cs for not beginning the process to implement it. On the global AIDS level, Obama received a C- for failing to fully fund PEPFAR. Obama received an incomplete for not yet appointing a global AIDS coordinator to replace Mark Dybul.

Last summer C2EA launched the Stand Against AIDS, a nationwide effort to secure a commitment from Obama to create a national AIDS strategy within 100 days of taking office.

See the national report card

The District of Columbia itself received a big fat F for failing to address D.C.‘s affordable housing crisis. The Washington, D.C. government has determined that there is enough
housing stock to house poor people in D.C. who need affordable housing and has developed strategies to increase outreach to people on housing waiting lists. However, there are no resources to get people into housing and D.C. has no strategy to address this lack of resources.

“I am HIV-positive and housing’s very important,” said Keith Holder, who participated in the rally. “It’s scary being positive and not having a place to stay or any insurance policy. We need not just housing, but affordable housing.”

D.C. Council Member at Large Michael A. Brown sent a statement pledging to do more to address the housing crisis. “I am saddened to hear that D.C. has received a failing score in terms of housing people living with HIV/AIDS, but unfortunately I am not surprised. This score must not be seen as an attack on our local government, but a call to action for us to do better,” the statement said.

New York, New York

The largest rally took place in New York, where some 300 activists rallied outside the Adam Clayton Powell Jr. State Office Building in Harlem. Holding life-size report cards, clients and staff from Housing Works, Harlem United, Bailey House and other organizations chided New York State and New York City. Campaign to End AIDS member Eric Bartley served as master of ceremonies. As other participants brought up report cards, Bartley explained each grade. Speakers included Bartley, Cooper, Housing Works President and CEO Charles King, Harlem United Deputy Director for Policy and Government Relations Soraya Elcock and Bailey House President and CEO Gina Quattrochi.

The grades for Albany were mixed. The governor’s efforts to reform Medicaid earned an A+, and the boost to public assistance earned the state a B. But a plan to eliminate highly successful job training and substance abuse services for poor people living with HIV/AIDS earned Fs, as did uncapped rent for New Yorkers in supportive AIDS housing. See the full report card for New York State

New York City did even worse. The City earned Fs for failing to expand access to housing for poor people living with HIV and for the proposed decimation of funding for legal and case management services. The city earned Ds for its failure to provide adequate housing for homeless people living with HIV/AIDS and for proposed cuts to HIV prevention and education.

“The other day the mayor and Health Commissioner Tom Frieden were actually giving themselves grades, and they took credit for lowering the number of AIDS deaths in the city,” Quattrochi said. “I always thought that was due to access to housing!” The crowd cheered.

King said that despite the abysmal grades, the City government has a chance to turn things around.

“If I were talking to Christine Quinn’s and Mayor Bloomberg’s parents and I wanted to tell them how their children could improve their performances, I’d tell them if they restore case management for supportive housing, they can get a C. If they enact the 30 percent rent cap they can get a B, and if they institute HASA for All, then they can get an A!,” King said.

See the full report card for New York City

To read more about those issues, go to housingworks.org/activism/

Right steps in Norfolk

In Norfolk, Virginia, some 20 people rallied outside City Hall, giving the city a “D” for failing to provide any of its own funding for people living with HIV and AIDS. The grade was supposed to be an F, but it was bumped up when the rally resulted in a meeting between Campaign to End AIDS Virginia founder Greg Fordham and one of the city manager’s deputies. “He listened to me speak about the problems people with AIDS are having with transportation, housing and food, and he agreed to come to one of our meetings to see what we’re about,” Fordham said.

Reenergizing The Fight For A 30 Percent Rent Cap

Thu, 12 Mar 2009 18:09:00

Fed up with living on $11 a day, more than 200 low-income New Yorkers with HIV/AIDS packed a meeting last Friday to learn about the bill in Albany that would cap the amount of money tenants have to pay for rent at 30 percent of their income. Bill sponsors Assembly member Deborah Glick and State Senator Tom Duane roused the crowd by pledging to work with the people in the room to move the bill forward.

“Me and Deborah are going to fix this but we need your help. You need to go to Albany and tell them how you hard it is to live and pay your rent!” an emotional and energetic Duane told the crowd as he moved theatrically around the room. “Say, ‘I don’t have money for toilet paper! I don’t have money for deodorant!’ “ Duane then lifted his arms up and said he wouldn’t wear deodorant in solidarity when the HIV-positive advocates come to Albany.

One audience member called out, “I’m so poor, I can’t even vote.”

Duane got serious for a moment. “No, never say that,” he told the crowd. “Say, ‘I may not have any money, but I have a vote!’ “

Righting a wrong

The belief among legislators that poor people don’t vote is one of the reasons that the 30 percent rent cap bill has stalled for three years. The bill (A.2565 and S.2664) was first introduced by Glick and Duane in 2006 and is meant to address a cruel disparity in the state.

HIV/AIDS Service Administration (HASA) housing is the only public housing program in the state that doesn’t cap rent payments at 30 percent of a tenant’s income. All other enhanced rent assistance programs, such as Section 8 and NYCHA, receive federal funding. Federal law sensibly states that low-income tenants shouldn’t have to pay more than 30 percent of their incomes towards rent.

Because HASA is funded by New York City and State and receives no federal money, 11,000 poor HIV-positive tenants housed through HASA pay an average of 50 to 60 percent of their public assistance benefits towards rent.

“This is an inadvertent error that needs to be repaired. Some low-income people have a reasonable rent cap and some don’t. It’s infuriating,” Glick said.

The bill has passed through the Assembly Social Services committee twice but has yet to come to a full vote. The bill hasn’t had any movement in the Senate. However Glick said, despite a tough budget year, she’s optimistic that the bill could pass through this year. She is working to educate her colleagues and promises there will be more cosponsors than ever before.

The forum Friday was organized by New York City AIDS Housing Network and was attended by clients and staff from Harlem United, Gay Men’s Health Crisis, CitiWide Harm Reduction, Bailey House and other programs.

Saving money

Although legislators are loathe to vote on anything that will cost the state money right now, capping rent at 30 percent for HASA clients will actually save the city and state money, according to an analysis presented by Ginny Shubert of Shubert Botein Policy Associates.

Estimated direct savings of over $19 million from prevented evictions would easily outweigh the projected incremental rental costs of $16 million (5.6 percent of current rental assistance costs for this group), which would be shared between New York State and City. Approximately 23 percent of HASA clients on rental assistance are approved for rent arrears payments during the course of a year, at a cost of about $4.7 million. Many others simply lose their apartments and become homeless. The estimated cost of an eviction for a HASA client is $15,600, which includes the cost of an average length of stay in emergency housing, security deposits, and moving costs.

While HASA provides no public data on evictions, the number of HASA clients in emergency housing (typically the result of eviction) increased 24 percent between November 2007 and November 2008. By preventing just 1,000 evictions each year among the 11,000 severely rent burdened low-income HASA clients (a conservative estimate), the savings realized through the proposed law would fully offset the cost of the rent share cap.

By reducing evictions and prevention arrears, the law would save New York money. Shubert’s analysis is based on comparison with HASA clients in Scattered Site I housing, which had a 30 percent cap placed on rent and who were much less likely to be in arrears or be evicted than those who had the higher rent burden.

In addition to the direct cost savings, a growing body of research establishes a strong connection between stable housing and favorable health care and HIV prevention outcomes for people living with AIDS. Without stable housing, they are less likely to adhere to medication or make regular medical appointments, and they are more likely to utilize costly public services such as emergency rooms. They are also more likely to engage in HIV risk behaviors that can result in new cases of HIV. By promoting better health care and averting new HIV infections, stable housing saves both lives and money.

“This is one of the great moments where you can save money while also doing the right thing,” Shubert said.

For the forum’s moderator, and NYCAHN member James Dean, these changes need to happen soon.

Dean told the Update. “I have to forgo basic necessities like toilet paper. I use newspaper. It’s a little rough.”

For more information, and to get involved with this campaign, contact NYCAHN organizer Jaron Benjamin at jaron@nycahn.org or 718-864-3932.

How to Renew PWA Ownership of NAPWA

Thu, 12 Mar 2009 17:44:00

At Housing Works, we have always believed that the movement to end the AIDS pandemic should be led by people living with HIV. That notion is true to our roots: Housing Works was born out of the New York AIDS Coalition to Unleash Power (ACT UP). ACT UP’s “nothing left to lose” militancy changed the course of the AIDS epidemic and had a positive impact on health care and drug development in ways that have benefited everyone, not just people living with HIV and AIDS.

But an AIDS movement led by people living with the virus did not start with ACT UP. In 1982, three years before ACT UP formed, a small group of people living with AIDS came together at an LGBT health conference in Denver to draft a manifesto. The manifesto demanded that people living with AIDS play a central role in determining their own fate and the right to live whatever remained of their lives with dignity.

The manifesto became known as the Denver Principles and is the Magna Carta of AIDS activism. The steps taken following that gathering led to the founding of the National Association of People With AIDS (NAPWA), our first unified national voice.

Sadly, NAPWA never received the full support of the community. Today, its dues-paying membership is almost nonexistent. In fact, NAPWA would not survive today if it were not for government contracts and grants from pharmaceutical companies that make it virtually impossible for NAPWA to serve as an independent voice on behalf of those of us who are living with the virus.

Notwithstanding the progress we have seen over the last two decades, we need a strong, membership-driven voice on behalf of people living with AIDS and HIV. For this reason, Housing Works is endorsing the NAPWA’s new membership initiative, the Denver Principles Project. This exciting effort has the potential to engage people living with HIV and AIDS and restore financial independence to an organization that could speak for the groups that are most infected and affected by the virus. The Denver Principles Project is intended to return NAPWA to its roots by actively diversifying its membership.

That means recruiting people living with HIV/AIDS (PLWHAs) who are poor, from rural areas, immigrants, young people and those who are uninvolved with AIDS advocacy. An expanded membership—NAPWA hopes to recruit 100,000 members the first year—will lessen the need for funding from government and the pharmaceutical industry, both of which compromise its independence and credibility. But possibility does not necessarily equal reality, particularly when it comes to money. And it’s not just a question of money. It is also about control. If NAPWA is to be truly independent, people living with the virus should control the governance of the organization.

To that end, I have recommended to Frank Oldham, NAPWA’s executive director, and the NAPWA Board that they create a series of benchmarks to ensure financial independence and restore leadership of the organization to people with HIV and AIDS as the Denver Principles Project unfolds. Those benchmarks include:

1) NAPWA should immediately ask members of the Board whose jobs involve for-profit activities that benefit from the epidemic to resign from the Board.
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2) When it reaches a realistic and sustainable membership and revenue benchmark, NAPWA should move to terminate relationships with funding entities that compromise its voice on behalf of people with HIV and AIDS, including pharmaceutical grants and government contracts.

3) When it reaches a realistic and sustainable membership and revenue bench mark, NAPWA should implement a minimum number of seats—perhaps one third—that are filled through election of PWLHAs by the members and dedicate resources to ensure the participation of unaligned low-income PLWHAs.

4) NAPWA should commit to utilizing a percentage of its membership resources to cultivate and engage its membership in the development of NAPWA’s agenda, program and policies and in direct grassroots consumer advocacy.

5) NAPWA should commit to the principle that the number of people working for AIDS service organizations and other non-profits in AIDS be limited to a percentage that is a significant minority of the Board, perhaps no more than one third. I appreciate that there are many well-intentioned people, much like myself, who are HIV-positive and fill leadership roles in AIDS service organizations. We have valuable expertise and should be utilized. But most of us also sit at other tables where our interests are actually more aligned with various sectors of the AIDS community rather than explicitly with PLWHAs. At times, those interests are one and the same, but that is not always the case. Making those voices a minority would truly empower the grassroots.

6) NAPWA should eagerly seek alliances that strengthen the movement or lead to more efficient use of resources and build its grassroots base, but NAPWA must foreswear any alliance that would compromise its role as the singular national voice for people who are living with the virus.

I have had discussions with both Frank Oldham and NAPWA Board Chair David Munar about these issues. They have assured me that the Board is seriously considering at least some of these proposals and that we will see the results of those efforts in the next few months. I appreciated their feedback and have high hopes for a reinvigoration of NAPWA. The progress we have made in fighting the pandemic was not made by sitting back and remaining passive.

Housing Works urges every single person in the United States who is living with AIDS or HIV to join NAPWA today. If you can pay the dues, pay them. If you can’t, sign up anyway. But don’t just sign up. Once you have become a member, act like you own the organization. Speak up, act up, organize and agitate. Demand that your organization, the National Association of People With AIDS, lives up to its charter and be the organization it was always intended to be.

Action Alert: Tell Obama to Kill HHS Reg!

Wed, 11 Mar 2009 18:07:00

On Tuesday, Barack Obama opened the 30-day comment period on rescinding Bush’s last-minute “conscience clause” HHS regulation. Bush’s loathsome policy would prevent health care providers from “discriminating” against employees who refuse to provide medical treatment to patients.

The regulation was intended to curtail women’s reproductive rights, but the vague language of the reg also makes it ok for doctors to refuse to treat HIV-positive people, transgender people and pretty much anyone else if they can come up with a reason.

E-mail your comments on the regulation to proposed recission@hss.gov by April 9. Here are some suggestions from our allies regarding what you can write!:

From the National Center for Transgender Equality:

…transgender people, already struggling for health care access, could be turned away by any medical provider who feels that transgender status is against their moral, religious, or even personal beliefs.

From a coalition of AIDS civil rights and reproductive rights advocates:

The [original] rule could make it more difficult for patients to receive a broad spectrum of health care services, including contraceptive care, HIV/AIDS care, fertility care, and mental health services. For example, the [original] regulation may encourage a physician or physician’s assistant to deny a patient access to the cervical cancer vaccine because the individual does not agree with sexual activity outside of marriage. Similarly, it might encourage a pharmacist to deny access to HIV medications at a HHS-funded pharmacy because of the pharmacist’s beliefs.

From a letter from the Women’s Collective, a coalition of women’s AIDS groups:

Women who are already stigmatized by race, class and HIV status will be most negatively affected by these new HHS regulations that provide extensive and broad ways in which a provider may refuse services to women but little guidance or protection for the women directly affected by these refusals. Women at risk for and living with HIV have ongoing medical needs that could possibly be refused by a provider under the new HHS regulations because they allow “any individual [the right to refuse] to perform or assist in the performance of any part of a health service program or research activity funded by the Department if such service or activity would be contrary to his religious beliefs or moral convictions.

This vague rule could allow a number of life threatening results:

On religious or moral grounds, a health care provider can deny a patient an HIV test because the provider disapproves of a patient’s lifestyle choices. In a location such as Washington DC, the nation’s capital, where HIV/AIDS rates are as high as some countries receiving PEPFAR assistance to fight HIV/AIDS, this possibility is unacceptable;
On religious or moral grounds, a provider could refuse to provide condoms to a woman living with or at risk for HIV/AIDS thereby putting the woman and her sexual partner at higher risk for HIV/AIDS, re-infection with HIV/AIDS and/or other secondary infections;
On religious or moral grounds, antiretroviral drugs, which keep many women alive and also prevent mother-to-child transmission of the HIV/AIDS virus, could be denied increasing death rates among women and increased mother-to-child transmission rates.
On religious or moral grounds, a provider could refuse necessary medical services to an injecting drug user, or a person in the LGBT community because the provider disapproves of the person’s lifestyle.
The stigma women living with HIV/AIDS already suffer could be exacerbated by refusal of their health care needs by providers who disapprove of their lifestyle.

Failing On AIDS?

Thu, 05 Mar 2009 20:51:00

On Wednesday, March 11, 50 days into President Obama’s presidency, Jeff Crowley will hold his first meeting with people living with AIDS as the nation’s new domestic AIDS czar.

Crowley, the respected new head of the Office of National AIDS Policy, will meet with the activists from the Campaign to End AIDS immediately after hundreds rally in D.C. to issue the president a report card on his progress on creating a National AIDS Strategy.

As part of the “Stand Against AIDS: 50 Day Report Card” effort, simultaneous rallies will be held in Harlem, Dallas; Jackson, Mississippi; Memphis Tennessee; Portland, Oregon; Reno, Nevada and Norfolk/Newport News, Virginia. Participants will grade their local officials on how they’re doing addressing the AIDS epidemic in their communities.

Wednesday coincides with the halfway point of the Campaign to End AIDS’ demand that Obama institute a National AIDS Strategy within 100 days of taking office.

Obama’s off to a good start by appointing Crowley, but every grade on the report card, which will be released next week, might not be so rosy.

Save the date

At 10:30 a.m. on March 11, renowned singer and actress Sheryl Lee Ralph and D.C. Council member Michael Brown will join hundreds of AIDS activists for the presentation of the President’s report card and issue a call for a renewed commitment to fight the HIV/AIDS epidemic in the United States. Instead of the played out rally on the Mall, the group will march over the Anacostia river and rally in Anacostia Park, to refocus much-needed attention D.C.‘s hardest hit neighborhoods.

The nation’s capital has the worst AIDS case rate in the country, with one in 50 residents living with AIDS and an estimated one in 20 infected with HIV. The hardest hit ward has rates of new infections that are 14 times higher than the ward with the lowest rate. And pediatric infections in D.C. account for nearly 9 percent of the total in the United States.

Meanwhile, in New York..

At the same time, hundreds of activists in New York, including folks from Gay Men’s Health Crisis, Harlem United and Housing Works, are meeting at 263 West 125th Street in Harlem. The C2EA New York City chapter will issue grades to New York State and New York City elected officials.

“We’re issuing New York grades because, ultimately, it is up to cities and states to implement the national AIDS strategy we are hoping to see from Obama. Our performance has been abysmal: New York is slashing AIDS services and HIV prevention funds,” said Eric Bartley, a member of the New York City chapter of the Campaign to End AIDS.

New York City earned F’s for failing to expand access to housing for poor people living with HIV and for the proposed decimation of funding for legal and case management services. The city earned D’s for its failure to provide adequate housing for homeless people living with HIV/AIDS and for proposed cuts to HIV prevention and education.

New York State fared a little better. The governor’s efforts to reform Medicaid earned an A+, and the boost to public assistance earned the state a B. But a plan to eliminate highly successful job training and substance abuse services for poor people living with HIV/AIDS earned F’s, as did uncapped rent for New Yorkers in supportive AIDS housing.

Check out the Update next week to read about the rallies in New York, D.C. and around the country!

For more information and to connect with a rally close to you, please feel free to contact C2EA at 1877-END AIDS (363-2437) or info@campaigntoendaids.org.

Why Did the Lobbyist Chicken Cross the Road?

Thu, 05 Mar 2009 18:23:00

What are you, a chicken?

That was Housing Works’ question for Greater New York Hospital Association President Ken Raske in a new radio ad and at a protest outside the GNYHA offices Wednesday. Housing Works is calling out Raske for refusing State Health Commissioner Richard Daines’ challenge to debate the state’s proposed Medicaid reforms which would improve health care for the State’s poor.

Housing Works’ radio ad is running on the “Fred Dicker – Live from the State Capitol” show on Talk 1300 AM between 10am and 11am until Tuesday March 10. The ad is a fake conversation between Raske and Daines, with “Raske” clucking like a chicken while “Daines” explains the merits behind the Governor’s Medicaid reform plan. Paterson’s plan will save New Yorkers $2.4 billion while actually expanding access to health care.

In a protest Wednesday, Housing Works and our allies from the Commission on the Public’s Health System picketed outside GNYHA’s Manhattan offices, chanting “Raske, Raske you don’t care! You’re laying eggs on good health care!”

Watch video of the protest:

Ken Raske Protest Footage from Housing Works on Vimeo.

Housing Works’ ad is a response to a multi-million dollar ad campaign by GNYHA and the 1199 health care workers’ unions misleading the public on Paterson’s Medicaid reforms.

Although Housing Works doesn’t have the budget of the big dogs, our ad and protest has received attention from the New York Daily News, the Associated Press and PolitickerNY.

The GNYHA is not as enthralled by Housing Works’ efforts. Brian Conway, GNYHA vice president of media relations and public affairs issued the following statement:

“Housing Works may have tarnished any chance of being taken seriously in New York’s health care debate. The same day they were releasing offensive caricatures and staging ill-informed protests, Ken Raske was in Albany doing the serious work of fighting for a budget that protects hospitals, nursing homes, and home care from drastic funding cuts. Their actions have also exposed the call for a public debate as the publicity stunt it was and is. And had anyone at Housing Works paid a fraction of attention to what GNYHA has been saying for months, they’d know that we strongly support additional investments in primary and preventive care.”

Housing Works President and CEO Charles King defended Housing Works’ protest and ads as a way of drawing attention to the improvements that Paterson’s health care plan would have on the lives of poor people.

“It’s ironic that Raske accuses Housing Works of not taking the healthcare debate seriously when he won’t even participate in a debate. It’s time for him to stop hiding behind his slick ad campaign,” said Housing Works President and CEO Charles King.

Strange bedfellows The New York Times, New York Post and New York Daily News have all run editorials lambasting the Greater New York Hospital Association for its self-interested attempts to sabotage the Governor’s plan. Housing Works support of the plan is detailed in an op-ed that ran in the New York Daily News. Medicaid Matters New York, an advocacy group for New York State’s four million Medicaid recipients, also supports the Governor’s changes.

Scattered Thoughts

Thu, 05 Mar 2009 17:42:00

In the face of devastating cuts to AIDS housing, providers banded together Thursday to strategize how to maintain quality care for people living with HIV. Their hope is that alternate funding from the City’s stimulus package and unused federal AIDS housing dollars can be used to make sure people remain housed. The HIV/AIDS Housing Advocacy Coalition meeting was organized by the New York City AIDS Housing Network.

Mayor Bloomberg has proposed two cuts to AIDS supportive housing: a $1.9 million cut to Scattered Site 1 (SS 1) programs, which would severely decrease the number of SS 1 case managers, and a $4 million cut that would completely eliminate Scattered Site 2 (SS 2).

Both programs are run by the HIV/AIDS Services Administration (HASA). SS 1 programs are supportive housing where the rent is paid directly by the provider. SS 2 programs are maintained by community-based organizations. Individual apartment leases are in the names of HASA clients, who eventually transition into independent living.

HASA case management ratios

Advocates’ first order of business was discussing—and rejecting—a proposal brought to the group’s attention by Project Hospitality Executive Director Rev. Terry Troia that would have lifted the statutorily mandated and court ordered HASA case management ratios and laid off HASA workers in order to save case managers in the Scattered Site programs.

The proposal was first brought up in a meeting of the Citizen’s Advisory Council for the Human Resources Administration (HRA). President and CEO of the The Fortune Society JoAnne Page made the proposal to HRA’s legal counsel and HASA Deputy Commissioner Matthew Brune. HRA has brought up changing Local Law 49 in the past as a bargaining chip.

At Thursday’s meeting Housing Works Senior Staff Attorney Armen Merjian explained the history of HASA, Local Law 49 and the lengthy court battle over HASA’s case management ratios. (To read more, see Return to HASA Hell). Merjian stressed that just because they are both called “case managers,” the employees at community-based organizations and HASA do drastically different work.

“We’re talking about the difference between psychosocial case managers and welfare benefit workers,” Merjian said. Furthermore, Merjian said, messing with Local Law 49 sets a dangerous precedent. “This is the greatest AIDS law in the world. This law is our life blood,” Merjian said.

Meeting members were persuaded by Merjian’s argument and unanimous in their disapproval of the proposal to eliminate case managers.

“This is the worst idea I’ve heard in ten years,” said Bailey House CEO Gina Quattrochi.

Seeing the outrage, Troia said she didn’t want to go against the community and backed down on the proposal but said advocates need to consider other creative options to stave off cuts.

“If it was a lousy idea, it was just an idea,” Troia said. “We’re just trying to think creatively.”

Finding alternatives

Providers agreed with Troia that AIDS advocates shouldn’t take Bloomberg’s cuts lying down. Although HASA is in trouble, a relatively small amount of money could make the most recent problems go away.

“1.9 million dollars [the amount to restore SS 2 cuts] is chump change. Before we ever give on anything, we should see what money is available,” Quattrochi said.

Quattrochi noted that the city has extra Housing Opportunities for Persons With AIDS (HOPWA) funding available that can be used to restore HASA cuts. However, because HRA oversees HASA, and the Department of Health oversees HOPWA dollars, it’s a challenge to get the branches to communicate.

“It’s up to us to put pressure on Linda Gibbs to tell these departments to work together and allocate this money,” said terri smith-caronia, Housing Works vice president of New York advocacy and organizing. Gibbs is deputy mayor of health and human services, and she oversees both HRA and the DOH.

In addition, Gibbs will have control over how federal stimulus money is allocated—and she needs to be convinced that AIDS housing deserves a pice of the pie.

The meeting participants also agreed that there needs to be constant activism, similar to the rally two weeks ago on the steps of City Hall. “Politicians say to us, ‘You need to be out there. When you’re out there, we give in,’ “ Quattrochi said.

Preparing for the end of SS 2

Advocates agree that SS 2 is a flawed model. HASA clients are expected to pay much of their income towards rent (because of the lack of a 30 percent rent cap). Tenants often go into arrears and end up back in Single Room Occupancy apartments.

Yet eliminating the funding stream means there will be even less housing available for people living with HIV/AIDS.

“It’s difficult for me to defend the Scattered Site 2 model, but we need something in its place because this money can’t go away,” said AIDS Center of Queens County Housing Director Kevin Blank.

Former SS 2 residents will be assessed and either placed in supportive housing or transferred to independent housing, and then, with consent, be linked to a COBRA case manager, or just receive help from a HASA case manager. Nearly 5,000 formerly homeless people with AIDS live in HASA-contracted supportive housing.

Fourteen of the city’s contracts with SS 2 providers will end in June 2009 and the remaining four will end in February 2010. The City and State will each save $1.3 million in 2009 and $4 million in the years afterwards.

HASA has made no plans for transitioning the Scattered Site 2 residents into other case management programs.

“We care about our clients so we need to make sure they are taken care of, but this really should be HASA’s job,” said Hilary Morgan, director of supportive housing for the Doe Fund.

But because HASA hasn’t stepped up to the plate, NYCAHN is going to organize a meet-and-greet between New York City SS 2 providers and COBRA case managers in order to facilitate a smooth transition.

Action Alert: Fight For The Omnibus 2009!

Thu, 05 Mar 2009 13:16:00

While Obama’s 2010 budget is the talk of the town, the Senate is currently considering the Fiscal Year 2009 omnibus legislation. The omnibus appropriations bill, which includes the majority of funding for the domestic HIV/AIDS agenda, increases the Ryan White by $71.6 million, HOPWA by $10 million and the National Institutes of Health budget by $938 million. It also decreases ineffective abstinence-only programs by $14 million (though no money should be spent on ab-only, of course).

The omnibus also appropriates $1.4 million to the White House to develop a National AIDS Strategy. It is imperative that the Senate to pass the FY 2009 omnibus without amendment this week to ensure that funding is increased for these and other vital programs that impact people living with or affected by HIV/AIDS.

If the Senate doesn’t pass the omnibus, a continuing resolution at FY 2008 funding levels will likely be enacted. This would mean flat funding for domestic HIV/AIDS programs and no funding for the development of a National AIDS Strategy.

The following Senators have indicated they are against the omnibus or undecided on how they will vote on it’s passage. If your Senators are on this list please call them immediately:

Sen. Evan Bayh (D-IN)
Sen. Christopher Bond (R-MO)
Sen. Russ Feingold (D-WI)
Sen. Arlen Specter (R-PA)
Sen. Ben Nelson (D-FL)
Sen. Mel Martinez (R-FL)
Sen. Claire McCaskill (D-MO)
Sen. Susan Collins (R-ME)
Sen. Bill Nelson (D-FL)
Sen. Lisa Murkowski (R-AK)
Sen. Robert Menendez (D-NJ)
Sen. Roger Wicker (R-MS)

Contact your senators now. Call (202) 224-3121 for the Senate switchboard. To find out who your senator is, as well see talking points, check out AIDS Action’s alert.

Return to HASA Hell?

Thu, 26 Feb 2009 18:20:00

With HIV/AIDS Services Administration (HASA) Scattered Site II transitional housing programs in danger of losing city funding, some housing providers have proposed a radical solution: Lift the statutorily mandated and court ordered-HASA case management ratios, lay off HASA workers, and redirect the savings to the endangered Scattered Site II housing programs. The only problem? Cutting case managers would be devastating to poor people living with AIDS in New York City. It would also be illegal.

Under Local Law 49, a 1997 law sponsored by then- City Council member Tom Duane, and pursuant to the 2001 court order in the landmark federal lawsuit Henrietta D v. Giuliani, the city is required to provide poor New Yorkers living with AIDS “intensive case management with an average ratio which shall not exceed one caseworker or supervisor to twenty-five family cases, and with an overall average ratio for all cases which shall not exceed one caseworker or supervisor to thirty-four cases.”

HASA case managers serve as a bridge between HASA clients and other government entities. Although clients often grumble about their case managers, managers serve a crucial role, approving apartments and making sure clients receive their critical subsistence benefits. HASA case managers’ jobs are vastly different from Scattered Site II case managers, who help poor people with AIDS navigate medical and mental heath care, substance use treatment, and general life problems. The latter simply cannot provide clients with government benefits.

Case management ratios at HASA are crucial for maintaining quality services for poor people living with AIDS. During Giuliani’s reign of terror, he attempted to starve the Division of AIDS Services (now HASA) by cutting back drastically on case workers. The case managers were so overwhelmed with their client caseloads that people were not getting benefits. Families with children didn’t see them added to their budgets, and homeless clients lost apartments. Some clients were starving for lack of Food Stamps, while others were cut off from their life-sustaining medications for lack of Medicaid.

“The case management ratios became so woeful you couldn’t reach a human body at HASA,” said Housing Works Senior Staff Attorney Armen H. Merjian, who, with co-counsel, pursued the lawsuit Henrietta D v. Giuliani on the grounds that the mayor was violating the Americans with Disabilities Act. Housing Works and other advocates staged protests where they dumped phones at HASA headquarters to demonstrate the point that calls to HASA went unanswered.

High-caseload perils

In addition to permanently requiring the case load ratios, the order in Henrietta D mandated three years of federal court monitoring of HASA. The reports showed that when case load ratios increased—even to 40 to 1—there was a direct correlation to higher numbers of clients who were unable to receive timely subsistence benefits.

“The reports showed that the HASA sites with the highest case load ratios were the most dysfunctional,” Merjian said. As a result of the legal advocacy in Henrietta D., by the end of the monitoring period in December 2004, HASA had come close to observing the law.

HASA for All, a bill that has been introduced by City Council member Annabel Palma, would expand HASA benefits to all people with HIV before they get sick. This law would expand the need for more HASA case workers, not less.

“Unlike the three-year monitoring period, the caseload mandate is of course permanent, and rightfully so, since it is the very ‘ramp’ that the ADA requires,” Merjian said, adding, “Accordingly, it is in fact illegal for the City or HASA to change those ratios under federal law.”

A better solution

Rather than bring back the bad old days of HASA, we need to fight for the Mayor to use money from the Federal Medicaid Assistance Percentage (FMAP) to save Scattered Site II housing. Under the proposed cuts to Scattered Site II housing, the City and State will each save $1.3 million in 2009 and $4 million in the years afterward, as contracts run their course. The relatively small amount of money it would take to save Scattered Site II can instead come from the $2 billion New York City will receive as its share of the FMAP stimulus money.

“In tough fiscal times, more people will need city- and state-funded health care and prevention services,” said Kristin Goodwin, Housing Works director of New York Policy and Organizing. “Housing and supportive housing are health cuts, and the city needs to be encouraged to use some of this money to fund health-related initiatives and save essential programs.”

Like all of HASA, Scattered Site II is a joint city/state funded venture, and is meant to be a transition from congregate housing to independent living in a regular apartments. Fourteen of the city’s contracts with Scattered Site II providers will end in June 2009 and the remaining four will end in February 2010.

Former Scattered Site II residents will be assessed and either placed in supportive housing or transferred to independent housing, and then, with consent, be linked to a COBRA case manager—a far more cost-effective placement, or just receive help from a HASA case manager. Nearly 5,000 formerly homeless people with AIDS live in some form of HASA-contracted supportive housing. HASA has 40,000 clients.

photo credit: http://www.flickr.com/photos/mpsfender182/2681841205/

Crowley’s a Hit!

Thu, 26 Feb 2009 18:10:00

AIDS advocates are uniformly delighted by Obama’s appointment of longtime Medicaid and Medicare guru Jeffrey Crowley as director of the Office of National AIDS Policy. Crowley’s appointment means that AIDS care and people with other disabilities will have a voice in the White House as the health care reform agenda and a national AIDS strategy is developed.

“I think he’s a phenomenal choice,” said Housing Works Vice President of National Advocacy and Organizing Christine Campbell.

As Obama’s top advisor on HIV/AIDS issues in the Domestic Policy Council, Crowley will report to Obama’s top domestic adviser Melody Barnes, and will serve as the administration’s point person on HIV/AIDS policy and the development of disability policies.

Why Crowley’s awesome

Crowley is not HIV-positive but he is a veteran of the HIV/AIDS community, including six years as deputy executive director for programs at the National Association of People with AIDS (NAPWA). He will be leaving a position as a Senior Research Scholar at Georgetown University’s Health Policy Institute and as a Senior Scholar at the O’Neill Institute for National and Global Health Law, Georgetown University Law Center. A former Peace Corp volunteer and high school science teacher, he is described by those who have worked with him as a fantastic resource as a numbers cruncher and an intellect who understands the nitty-gritty of policy and government.

“He has a good grasp of the bigger picture and really helped us coalition-build with other disability advocacy groups,” said Andrea Weddle, a member of the Health Care Access Working Group. “He also happens to be the world’s nicest guy.”

Crowley was a member of the Federal AIDS Policy Partnership’s HIV/AIDS Medicare and Medicaid Work Group for people with HIV/AIDS and has consulted for the Health Care Access Working Group. He has been an invaluable resource to advocates on complex policy issues including the Early Treatment for HIV Act, Medicare Part D and was instrumental with policy guidance for overturning Bush’s CMS regulations.

‘Consensus builder’

In an arena overflowing with egos, Crowley has stood out for his ability to build consensus and work with the AIDS community. “The best part about Jeff is he’s an incredibly hard worker,” said Robert Greenwald, director the Treatment Access Expansion Project. “He’s a consensus builder, and he’s incredibly well-grounded in the community. He is one of the smartest people about health care reform. He’ll work well inside the White House. The White House couldn’t have made a better choice if it’s going to provide meaningful change around health care reform.”

Project Inform Director of Public Policy Anne Donnelly agreed. “He’s amazingly capable of working with lots of different kinds of people. He’s a real advocate and activist and fights against social injustice.”

Even the president is adding on to the Crowley lovefest. “Jeffrey Crowley brings the experience and expertise that will help our nation address the ongoing HIV/AIDS crisis and help my administration develop policies that will serve Americans with disabilities,” Obama said in a statement.

Crowley also spoke at the 2008 National AIDS Housing Coalition (NAHC) summit about the connection between housing and health care for people with HIV.

“He clearly understands the impact of housing as it relates to health outcomes of people living with HIV and AIDS,” said NAHC executive director Nancy Bernstine. “I’m absolutely encouraged by this appointment.”

Sending in backup

While Crowley’s knowledge-base has primarily been on entitlement programs, advocates are optimistic that Crowley will also stand up for evidence-based prevention policies and other issues important to combating the AIDS epidemic.

“He has a vision for how our health safety net can be more responsive for HIV, and I believe he has a comprehensive broad view about prevention topics,” said David Munar, vice president for policy and communications at AIDS Foundation of Chicago, who has worked with Crowley for ten years. “I’m excited for him and I’m excited for us.”

But despite Crowley’s newfound status as an AIDS policy rock star, he’s only one person. Although his boosters say Crowley will catch on quick to prevention policies, people with more of a prevention-focused background will be needed to round out the team.

“He may not have a profound track record on the prevention issues, but I don’t think we could have had a better pick. We can’t expect to get a jack of all trades,” said Bill Smith, director of public policy at SIECUS, a comprehensive sex education advocacy group. “The White House has offered the money for four or five people to staff the office. That’s good stuff for us. It gives us additional opportunity to find other amazing people to work on prevention issues.”

Don’t Cut Us Out

Thu, 26 Feb 2009 18:04:00

When Frederick Taylor found out about Housing Works’ Job Training Program (JTP) back in 2004, he hadn’t worked full-time in six years. He wasn’t sure if anyone would hire him because he had HIV. But Taylor persevered and enrolled in JTP.

“I was sick and tired of handouts,” Taylor said. “Public assistance doesn’t assist and aid you like it should.” Now he is a sales associate at Housing Works Thrift Shop on 17th Street. He is also a donations associate, soliciting donations for Housing Works’ biggest fundraising events, Fashion for Action and Design on a Dime.

On Monday, Taylor told his story to state legislators. He is one of dozens of JTP students and alumni making the trip to Albany every week to educate legislators about the importance of job training for people with HIV. Despite the success of the program, Governor Paterson’s 2009-10 budget threatens to eliminate the $1.4 million in state funding that supports it.

This cut is particularly troubling because the program has consistently ranked high among the Office of Temporary and Disability Assistance (OTDA)‘s “mission-driven programs.” Job training program graduates have gone on to employment at organizations such as Bellevue Hospital, Planned Parenthood and NYU.

This $1.4 million welfare-to-work program is unique among job-training programs because it doesn’t give programs full funding until graduates receive a full-time job with health insurance. State funds support seven such programs in New York City, Westchester, Albany and Syracuse. Between 2003 and 2008 the program placed 615 poor New Yorkers with HIV/AIDS into employment.

Housing Works won the fight to restore the threatened funding cuts last year.

The legislative offices Taylor met with (including Assemblyman Nelson Castro, who was there in person) were universally outraged by the cuts to job training, as were all of the legislators Housing Works has met with. The JTPers are attempting to meet with every state legislator to make sure no one will block a probable amendment by the Assembly Social Services committee to reinstate funding for job training.

“This is a winnable battle, but we need to keep doing the leg work to make sure each legislator realizes that this small pot of funding makes a huge difference for New Yorkers with HIV and AIDS who really want jobs,” said Housing Works Vice President of New York Advocacy and Public Policy terri smith-caronia.

What would happen if funding stopped?

Reinstatement of funding is not guaranteed. And a cut to the job training program would be devastating for hundreds of New Yorkers with HIV and AIDS. Some programs would certainly be eliminated. At Housing Works the program has institutional support that would stop the program from being completely eliminated, but the program would certainly lose effectiveness.

“We would have to drastically cut the program,” said Linney Smith, Housing Works senior vice president of prevention and services. “We would be unable to provide the wage subsidy, travel allowance, stipend and hire the job coach. We would be cutting a program that has proven to be a viable source of training and employment for people living with HIV and AIDS. We will be returning people to welfare or causing people to stay on welfare when they would prefer to learn a skill and be gainfully employed.”

Thanks to his job at Housing Works, Taylor has flourished. He is financially self-sufficient, renting an apartment in Queens with his partner.

Taylor said Housing Works’ Job Training Program also helped him come to terms with his HIV status. “Along with soft and hard skills, JTP taught me how to deal with stigma,” he said. “I’m not ashamed to tell customers I’m HIV-positive. I want to show people that I’m alive and I have energy.”

Contact your state legislators and tell them to support funding for job training for people living with AIDS! Find out who represents you and give both your state senator and assemblymember a ring!

Obama Should Trash Ab-Only Funds

Thu, 26 Feb 2009 17:50:00

This week, advocates got word that the House cut back on the dreadful abstinence-only funding by 13 percent in its 2009 budget. While that’s an improvement over the increase in such funding Pelosi and company initiated in 2007, it still means $95 million will go to programs that fail to prevent HIV and unwanted pregnancies. Obama’s transition team asked the House to cut ab-only funding by $28 million, and the House met him halfway.

But comprehensive sex ed advocates are pinning their hopes on Obama to zero out money for ab-only education in his 2010 budget, and hoping Congress doesn’t do anything to jeopardize this.

“The reason people haven’t made a real stink about it is this is the first cut we’ve had. All the effort has gone to influencing Obama’s 2010 health budget,” said Marcela Howell, Vice President of Advocates for Youth.

So far, all signs point towards the welcome death of ab-only funding. In Obama’s broad budget overview Thursday, he used the important buzz words “evidenced-based” in calling for models of prevention.

In Obama’s Health and Human Services overview it stated, “The Budget supports State, community-based, and faith-based efforts to reduce teen pregnancy using evidence based models. The program will fund models that stress the importance of abstinence while providing medically-accurate and age-appropriate information to youth who have already become sexually active.” Obama is expected to release his complete 2010 budget in March.

In addition Howell said her group met with Obama’s Domestic Policy Council Melody Barnes, and that Barnes “seemed amenable to eliminating funding.” And ab-only funding fits the bill of Obama’s call Tuesday that “in this budget, we will end education programs that don’t work.”

Getting to zero

There are three different streams of funding for abstinence-only education: the Community-Based Abstinence Education (CBAE) program, the Adolescent Family Life Act, and Title V, which sends block grants to states. As rhrealitycheck.org notes, “it should tell you something about the unpopularity of the program that 16 states have turned down Title V funds even as state budgets reel.”

But the Congress has been a challenge, said Bill Smith, vice president of policy for SIECUS, a comprehensive sex education advocacy group. “Obama must lead on this, so Congress will follow suit,” he said.

But Housing Works President and CEO Charles King said that Obama should have let it be known that he wouldn’t sign a 2009 spending omnibus that included ab-only funding. “This may be a systemic issue that the White House needs to weigh in sooner with legislation. Certainly the White House knows this is a hot issue,” King said.

And this is an issue where Congress hasn’t shown much leadership. After Dems took control of Congress, advocates assumed ab-only education would soon be a bad dream. But Pelosi and HHS Chair Rep. David Obey proved all-too-eager to use ab-only funding as a bargaining chip with Republicans.

“Obey’s not a big supporter of any reproductive health issues,” Howell said.

Advocates are cautiously optimistic that this could be the last budget the United States ever sees with funding for abstinence-only education. Reproductive health and HIV/AIDS groups have been collaborating on grassroots actions to lobby Congress and the President to zero out the funding. In addition, Sen. Frank Lautenberg and Rep. Barbara Lee—co-sponsors of the REAL Act, which would fund comprehensive sex education—are drafting a letter asking the President to do just that.

Tell Obama not to fund abstinence-only sex education! Call the White House at 202-456-1111

Talking points:

Sex ed should be medically accurate, not based on religious ideology
Studies show that abstinence-only programs fail to prevent pregnancy and STDs
For FY2010 budget, eliminate the $176 million currently spent on abstinence-only programs

photo credit: http://www.flickr.com/photos/notbrucelee/3280543803/

Resetting the Standard

Thu, 26 Feb 2009 17:40:00

As a person living with HIV, I know well that starting treatment for HIV is ultimately a personal decision: Every infected person, upon diagnosis, should have the opportunity to discuss the pros and cons of treatment with his or her medical provider. Part of that discussion is, of course, when to start treatment, given those pros and cons and given the latest treatment information. It should always be the patient’s choice when to initiate treatment and what treatment to initiate under the direction of a medical provider.

I also acknowledge that much is not known about many treatments and that legitimate fears remain about drug resistance (although I believe these fears are less significant today because of the multiple combinations presently available and new therapies under development).

Despite these caveats, I believe it is time for the medical community and all levels of government to do more to exploit the benefits of early treatment of HIV, both as a means of keeping people healthy and of dramatically reducing the spread of the virus. Here in New York City and in other cities and areas, outdated definitions of HIV—and thus the standard of care used to treat it—mean that poor and chronically ill people are actually cut off from supportive services that are every bit as critical to their health as their meds.

Emphasizing access to treatment

More and more studies indicate that the delay of treatment until a person’s T-cell count falls below 500 is deleterious. Even above that number, HIV seems to have an impact on the immune system, encouraging the advancement of other diseases, including hepatitis C and various carcinomas. For that reason, I believe that many HIV positive people may choose and should have the right to choose to begin treatment as soon as they learn of their infection. (I know that there is disagreement among respected scientists about when HIV treatment should start—Housing Works absolutely opposes any standard of care that denies or compels treatment or that sets a one-size-fits-all protocol in regard to treatment. Undoubtedly, more research needs to be done about when treatment should begin so that doctors can give people living with the virus the best possible advice.)

Early HIV treatment has a significant impact not just on health but also prevention efforts. First, it is apparent that treatment dramatically lowers the amount of virus in a person’s body, thereby making the virus significantly more difficult to transmit. The more positive people who have access to treatment, the less the virus will likely be transmitted. Thus, simply making treatment more widely available will have a structural impact on the spread of HIV. People who find safer sex difficult or onerous to manage in monogamous or non-monogamous relationships should consider treatment both for their own health and as a means of protecting their sexual partners.

Timely implementation of post-exposure prophylaxis (PEP), whatever the nature of the exposure, also makes it far less likely that an exposed person would become infected. Thus post-exposure prophylaxis has been made increasingly available as a standard of care for both workplace exposure and rape. Housing Works believes that people who have engaged in high risk sexual behavior, whether coerced or not, should have ready and timely access to post-exposure prophylaxis in a non-judgmental way. PEP should always be accompanied by counseling and information that helps the individual make educated decisions both about treatment and about future risk behavior.

Let me be clear: I do not see the many benefits of HIV treatment as justification for coercive treatment. However, it is clear that those benefits need to be recognized and incorporated into our HIV health and prevention efforts.

Dangerous definition

Many U.S. cities and jurisdictions and programs to one degree or another tie HIV services to health status in relation to standards of care for treatment. For example, in New York State, “HIV Disease,” which was once terminology for purposes of Medicaid billing, became written into law as the threshold for New York State HIV-enhanced rental assistance and later, in New York City, for a wide range of services ranging from supportive housing to enhanced nutrition, transportation and other benefits. “HIV Disease,” which is defined by the New York State AIDS Institute, has historically been tied to the standard of care for treatment.

Housing Works has urged New York State that its standard of care recognize treatment upon diagnosis as a recommended treatment option. Housing Works has also urged that the definition of “HIV Disease” be changed to “HIV infection,” without a tie to T-cell counts. The reality is that for low-income people living with HIV, and particularly for people with multiple comorbidities such as homelessness, chronic chemical dependence and mental illness, basic supports such as housing, nutritional support and transportation assistance are essential for well-being whether or not they are on treatment.

If a person opts for treatment, such supports are vital for adherence. Perversely, if a New Yorker chooses treatment before reaching the current threshold of 350 T-cells or lower, that person may never achieve the threshold that would allow him or her to receive these supports. Thus, the system provides a disincentive for people who would like to enter into treatment before their T-cell count falls below 350.

There is strong evidence that housing and ancillary services are essential for both HIV prevention and maintenance of health whether or not a person is ready for treatment. So treatment definitions and services should ultimately be decoupled. But as long as they are coupled, it is imperative to recognize the changing recommendations regarding treatment.

HIV medications are not perfect and no one has a total understanding of their effects, especially because it can take years for problems to surface—that fact only underscores how important it is that people be informed about their treatment choices. However, it is clear that we are not taking full advantage of one of our best weapons to treat and end this epidemic. Housing Works will continue urging New York’s local and state governments to address this flaw in its AIDS services. I urge others in the AIDS community around the U.S. to do the same.

Paterson Speaks Truth

Thu, 19 Feb 2009 20:30:00

Wednesday in a speech to media and health care advocates Wednesday, Governor David Paterson and his health care team defended his plans to reform Medicaid as long overdue.

Paterson answered questions from the media and health advocates, including representatives from Housing Works, Maimonides Hospital, the New York Academy of Medicine, William F. Ryan Community Health Network and the Community Health Network.

“What happened was, for 15 or 20 years, we resisted [changes]. We had hospitals at half the capacity. We could’ve saved the money then,” Paterson said at the event, which took place at the New York Academy of Medicine. “And the point is that we didn’t. And what happened was that it became, in many respects, institutional. Everybody was fighting to maintain their particular interests and we got into this situation.”

Although Paterson defended the $3.5 billion in cuts included in his plan as necessary to improve the quality of health care, he said that some—but not all—of the health care cuts would probably be restored by federal stimulus money. He did not say how much would be covered and said not all of the $11 billion in Federal Medicaid Assistance Percentages would go back into Medicaid spending.

Paterson said that, unlike with the education stimulus dollars, the federal government doesn’t require FMAP to go back into health care.

“We will use large portions of the FMAP money for relief in the health care system,” Paterson said. “But we want to use it wisely.”

The state hasn’t decided how much money will be allocated back to hospitals or for, that matter, anything else. The governor’s office is beginning to have meetings about that this week and are accepting “shovel-ready” proposals.

You can watch the full video of the speech from the Governor’s website

The actual truth

Paterson also responded to the nasty and expensive advertising campaign by 1199 and the New York Hospital Association. “Many of the health care organizations that don’t have $2 million to spend on television ads are supporting this process,” Paterson said.

Housing Works ran a much less expensive radio ad countering the hospitals and hospital unions’ campaign during Fred Dicker’s influential Albany radio show last week and authored an op-ed in the New York Daily News Thursday.

The unions launched a new campaign this week (see video below) stating “facts” about Paterson’s health care reforms. However, those too, are misleading and taken out of context. For example, the advertisement claims that The New York Times wrote that “hospitals could face bankruptcies, service cuts and layoffs within a matter of months.” However, the actual article quoted offered these as “among the doomsday predictions of public and private hospital executives across New York City.”

1199/GNYHA: “Fact” from Elizabeth Benjamin on Vimeo.

State Department of Health Commissioner Richard Daines, a former hospital executive, said in a question and answer with advocates after Paterson left, that the advertisements’ doomsday predictions were inaccurate. He said that the cuts would likely mean freezing executive pay and other cost-saving models—not closing emergency rooms. “That would be the last thing to go,” Daines said.

The commissioner said that the cuts are being made to encourage hospitals to change the treatments they provide and focus on preventive and outpatient care instead of inpatient procedures. “This is not a budget where everything stays the same. Rational managers change business models,” Daines said. He also said that the hospital system overall would lose less than two percent of its revenue.

Expanding care

Paterson’s health care reforms would save $2.4 billion by updating the anachronistic Medicaid reimbursement rate. $800 million would be transferred to community-based care and expanding preventative services for childhood obesity, AIDS, asthma and diabetes, which disproportionately hit poor communities.

The plan also expands some health care and eliminates barriers such as finger-imaging for Medicaid recipients that discourage people from seeking care. The plan would expand eligibility for Family Health Plus, and extend affordable health insurance to dependents.

However, even with these reforms, three million New Yorkers would remain uninsured. During the question and answer portion of the Wednesday program, National Center for Law and Economic Justice Health Policy Coordinator Denise Soffel said, “I really appreciate the need to invest in community-based care, but I also think it’s really important to invest in coverage because if people aren’t covered they can’t access the services. I’d love to know how you’ll tackle the problem of the more than 3 million New Yorkers who don’t have health insurance.”

But Paterson dodged the question. “In a deficit you can’t ask questions that include conjunctions,” he said, pausing to get the most out of his laugh line. “If we shift money, it’s because we don’t have money.” Paterson explained that there is no money to both expand health care access and coverage.

Soffel told the Update, “The state is committed to expanding public coverage and their heart is in the right place. It’s a resource question and my job as an advocate is to push them to do more.”

Where Are the Black Gay Men?

Thu, 19 Feb 2009 17:54:00

Two weeks ago individuals and organizations across the nation marked National Black HIV/AIDS Awareness Day. Judging by many of the articles, press releases and events commemorating the day, however, you might never guess that the highest percentage of new HIV infections in 2006 was among black gay men.

Why, even on a day dedicated to black AIDS awareness, do black gay men remain a footnote?

“It’s symptomatic of the problem we face of ridding our community of HIV in order to break the back of the epidemic,” said Ernest Hopkins, policy director of the Black Gay Advocacy Coalition. “The most heavily impacted population by percentages is black gay men. If you want to talk about this epidemic you have to start there, and then move very quickly to black women, or you’re not doing your job.”

Two events that got advocates talking were the National Black Leadership Commission on AIDS (NBLCA)’s forums in New York and in Washington, D.C. (the latter included black ministers from the D.C. area).

The New York forum extensively covered women, incarceration and drug use, while gay men and homosexuality were mentioned in passing and only as they related to women being infected by men who have sex with men. The theme of the BLCA event was “HIV/AIDS and Black Women,” but the question remains why, on National Black HIV/AIDS Awareness Day, one of the highest profile African-American groups failed to address the most-affected black demographic.

“A lot of us left the session angry and we weren’t sure why,” said Kristin Goodwin, Housing Works Director of New York Policy and Organzing. “There was nothing wrong on the surface, but it was distressing the way the event made women seem like victims and didn’t even account for gay men who don’t have sex with women.”

NBLCA President C. Virginia Fields told the Update that her speech at the event was intended to be broad-based. “I was focused on the community. I think when you talk about the disease, you talk about all people,” she said, adding that there was particular focus on women and children because “that’s the population I find often does not get mentioned.” Fields also said that “it’s crucial that black gay men be part of the conversation not just around AIDS, but making homophobia unacceptable.”

Celebrity scandalette

Another Black AIDS Day dust-up involved Sexuality Information and Education Council of the United States (SIECUS), which solicited its board member, ER star Gloria Reuben, to write an op-ed for Huffington post about AIDS in the black community and the need for comprehensive sex education.

People were upset because Reuben didn’t mention gay men, or men period, in her piece.

“HIV/AIDS in this country is a man’s disease – about ¾ of the epidemic – most of which is among gay men of all races, and particularly among gay black men and gay Latino men. Not mentioning this fact in one sentence, or even a phrase, is absolutely unacceptable,” Jim Pickett of the AIDS Foundation of Chicago wrote in a message to the Federal AIDS Policy Partnership (FAPP) listserv.

SIECUS Vice President of Policy Bill Smith responded to the feedback that Reuben couldn’t be expected to speak for everyone, particularly in one 800 word op-ed. “She does mention homophobia specifically as a major issue. As per usual, we cannot and should not rely on a single voice to carry every angle of every message so we hope others can add their voices as well to these very important matters,” Smith wrote in a message on the FAPP listserv.

By the numbers

Black gay men and black heterosexual women are at greatest risk for getting HIV. According to statistics by the Centers for Disease Control and Prevention (CDC), of the 27,107 reported HIV infections among African-Americans in 2006, 42 percent were among men who have sex with men and 26 percent were among women who have sex with men. (The remaining third was intravenous drug users and men who have sex with women).

Things were worse for black gay men than for gay men of other races, too. In 2006, black men between the ages of 13 and 29 accounted for more new HIV infections among gay and bisexual men than any other race or age group (young gay and bisexual men is the only category where new infections continue to rise).

“Given the news of 2008, HIV among black gay men is all we should have heard about on Black AIDS Awareness Day,” said Kai Wright, publications editor for the Black AIDS Institute. The Institute released a report on Black AIDS Awareness Day with a section dedicated to black gay men called “Black Gays in Urgent Need.”

All these stats are not to suggest that the epidemic among black women does not deserve urgent attention. While it is crucial to talk about black women being infected, many say that this is done at the expense of talking about gay men who are not having sex with women.

Charles Long, an advocate with the New York City AIDS Housing Network, said that on Black AIDS Awareness Day—and every day—when talking about AIDS in the black community, he often sees “homophobia addressed very generally.” He says this general approach to homophobia happens in many black churches and homes but is particularly distressing when organizations that purport to address the issue won’t explicitly talk about helping black gay men.

“Even this community that claims to be doing something is still not talking about black gay men,” Long said. “We’re willing to mention them but we always want to swing the conversation back to women. We need black men to confront institutions that need to analyze how they confront program efforts and treatment efforts.”

Kenyon Farrow, national public education director at Queers for Economic Justice and policy fellow at the National Gay and Lesbian Taskforce, agreed.

He said, as an example, that when the Black AIDS Institute was presenting its report on AIDS in Black America at the International AIDS Conference in August, journalist after journalist prefaced questions in regard to men who have sex with men with the phrase, “I’m not talking about gay and bisexual men.”

“There is sort of an inability and a resistance to talk specifically about black gay men and trans women,” Farrow said.

This inability only compounds the problems of homophobia affecting black gay men that lead to HIV and other problems. “People gloss over gay men period. That’s one of the driving factors in this epidemic. Anything considered gay is considered white. The underlining factors really are social factors. Someone who feels they don’t exist will do things that people do when they feel invisible,” said Toku Osubu, executive director of Gay Men of African Descent.

What’s being done

There are numerous efforts nationwide to stop HIV in the black gay community. Gay Men of African Descent has a campaign to address stigma and discrimination, and are working with service providers to confront homophobia among black gay men.

Hopkins said that his group, founded in 2006 by longtime gay black advocates, has been working with public officials at the CDC, Substance and Mental Health Services Administration and the National Institutes of Health to promote research into what fuels the AIDS epidemic among black gay men.

The Black AIDS Institute’s next major report is going to be about black gay men. One of the problems is that research takes a while to spurn action. “A lot of the work that needs to be done to get on the ground now would have been had to be done by the NIH ten years ago,” Hopkins said.

Long and other younger advocates are working to try to build leadership opportunities for young black gay men, so they have more opportunities to have voices in this discussion.
“There’s no real transition of power to young men of color,” Long said.

Attention Mississippi State Senate

Thu, 19 Feb 2009 17:54:00

There was exciting—and not so exciting— AIDS news out Mississippi last week. The state’s House of Representatives voted 78 to 40 to implement a pilot program for the first-ever comprehensive sex education in Mississippi schools. But the House also voted nearly unanimously in support of a law that amends the sex offender code such that people who knowingly transmit HIV must register as sex offenders.

Both of these bills are headed to the Senate—though advocates are hoping the nonsensical sex offender bill dies before it gets there.

Qualified win for comprehensive sex education

The House bill, which would start comprehensive sex education programs in school districts selected by the Department of Education, isn’t perfect, so advocates are working to make the Senate version of the bill better. Some key flaws are that parents are allowed to opt-out of comprehensive sex education classes and the fact that boys and girls are going to be separated.

“We want boys and girls to be having these conversations with each other,” said Valencia Robinson, organizer of AIDS Action in Mississippi.

The legislation would still be a major victory in Mississippi; just this January, it was announced that the state has the highest birthrate among teenagers in the nation.

Advocates from groups including AIDS Action in Mississippi, the ACLU of Mississippi and the Reproductive Freedom Coalition were able to defeat an amendment that would have taken the word “comprehensive” out of the bill.

“This is only the beginning, but we have most certainly reached a turning point,” Shawna Davie of the ACLU of Mississippi wrote in a letter to supporters. “Three years ago we were fighting some of the most detrimental legislation in the country, now we are taking steps forward with more progressive legislation.”

Legislating stigma

The same House was less enlightened when it passed a bill (HB1079) requiring people who knowingly transmit HIV to register as sex offenders. AIDS advocates want this bill killed before it goes to the Senate. It is unclear how this bill will be enforced, and it stigmatizes all people with HIV and AIDS by labeling them as sex offenders. More importantly, it ignores the actual problems of how HIV is transmitted.

A 2006 study shows that although 95 percent of people with HIV never transmitted the virus , the vast majority of people with HIV transmit it before they realize they are infected. This is a reason to expand testing—not to enact unscientifically based, stigma-promoting legislation.

For more information about these bills and what you can do to help, contact AIDS Action in Mississippi at 601-944-1403.