The Cure Blog

Activist Computer Security Workshop-October 15, 2011

2011-10-05T11:53:00.001-04:00

Freedom of the Word

& Computer Security

A hands-on workshop for Philadelphia community activists—This means you.

Saturday October 15 9:30 AM - 2 pm at LAVA

4134 Lancaster Ave, West Philly

Are you a Philly community activist? Do you realize that a lot of your online organizing (even information on your phone) is accessible to people, corporations, or government officials who might be interested in your activities? We want to educate community activists about ways to stay safer. Do you work on fracking? Prison issues? #OccupyPhilly? AIDS? Alternative media? This is for you.

This free, groundbreaking workshop is organized by a new collaboration of social justice hackers and longtime Philly community activists. We will teach:

1. What is at risk--your civil rights, your political work, and even your freedom.

2. Threat models--ways to think about your safety online and that of your fellow activists.

3. Concrete strategies for staying safer, and keeping fellow activists safer, online.

4. Do you know what US companies like Cisco Systems are doing to repress activists in other countries?

Teachers:

Jonah Silas Sheridan, a California information security activist and trainer.

(Tentative) Roger Dingledine, Developer of Tor, software for staying safe online.

Interested in attending? RSVP to: Katie@critpath.org

Brought to you by friendly, longtime Philly activists Onion from LAVA Space, Steph A from the Hacktory, Katie K from The AIDS Policy Project, and a host of others.

Our Call for NIH to Quadruple AIDS Cure Spending is in Nature Medicine!

2011-06-07T15:03:00.163-04:00

Today, as we were putting out a fund raising letter for our group, we were pleased to see our demand--that the NIH spend $240 million for direct AIDS cure research--cited in the major scientific journal Nature Medicine. The NIH currently spends less than $60 million, or 3% of its AIDS research budget, on direct cure research.

Yet this is an opportunity for the US to do something great in the world while preserving our national interest: The US spends $24 billion on AIDS every year. AIDS will soon comprise half the US foreign aid budget. If we can develop a cure, we will solve one of the world's worst plagues and save billions upon billions of dollars every year.

So here's the fundraising pitch: The AIDS Policy Project is engaged in cutting-edge AIDS advocacy focused solely on a cure. We wrote the first plain-English report, "AIDS Cure Research for Everyone," on the scientific issues and political landscape around a cure. We held the first town meetings, and engaged the top researchers in the field. We gave the first award to Gero Huetter, the man who cured the Berlin Patient, on the steps of San Francisco City Hall on behalf of the people of San Francisco. Our investigation yielded the fact that the NIH was spending only 3% to find a cure. We will be the first organization that crowdsources new AIDS cure ideas online. And this was Year 1 of our campaign.

Please consider making a contribution to more groundbreaking AIDS advocacy.
One of our goals is to raise awareness of the lack of funding for AIDS cure research--raise it in the larger scientific community, in the general public, and most of all among funders including US Congress and the White House. And awareness is certainly growing--for instance, there was a major article in New York Magazine about this issue last week, which we pitched and where we are quoted (barely). But we are the only group to publicly call for more funding for a cure. We are shaping events, not just monitoring them or trying to exploit them for fundraising. Power concedes nothing without a demand, to quote Frederick Douglass. It never has, and it never will.

We believe that the "scientific strategy" for a cure should include, among other things, enough funding so that major, scientifically worthy cure projects are not delayed by years due to lack of money. This is not currently the case.

Can we hold the NIH to its brand-new commitment to, as Tony Fauci recently put it, "Pull out all the stops" to develop a cure?

Together we can.
Please make a contribution to our June AIDS advocacy campaign--our goal is to raise $30,000 by June 30.

Join us. You will look back on this moment and be proud that you did.

Thanks,

Kate Krauss, for everyone at the AIDS Policy Project

Nature Medicine: On thirtieth anniversary, calls for HIV cure research intensify

Nature Medicine 17, 643 (2011) doi:10.1038/nm0611-643
Published online 06 June 2011

NATURE MEDICINE | NEWS

On thirtieth anniversary, calls for HIV cure research intensify

Lucas Laursen

Thirty years ago this month, scientists first reported the existence of AIDS, and in the intervening decades researchers have focused steady efforts on prevention, long-term treatments such as antiretroviral drugs, and patient care. What has fallen in and out of
fashion during that time is seeking a 'cure' for HIV. That changed when scientists reported that they had cured one man of the virus through a bone marrow transplant (Blood 117, 2791–2799, 2011). But the circumstances of that 2007 transplant were unique, and researchers say they are uncertain about how to fund additional cure-directed research
without cannibalizing other components of the global HIV/AIDS research machine.

“That's the tricky part,” says Bertrand Audoin, executive director of the International AIDS Society (IAS), a Geneva-based HIV research and education association. “Actually, to be honest, I'm glad it's not for me to decide.”

To address the issue, the IAS has invited a working group to its biennial research meeting in Rome this July to hash out ideas about how to include cure research within the existing framework of HIV/AIDS studies. “Our goal after the Rome meeting is to have enough scientific ideas to reach out to new donors,” Audoin says, though they will only ask for pledges this year. Funding requests for specific avenues of cure research will have to wait until the working group releases a more formal scientific strategy at the July 2012 meeting in Washington, DC.

So far, funding earmarked for cure research is a tiny fraction of overall HIV/AIDS spending, says David Margolis, a virologist at the University of North Carolina at Chapel Hill and a member of the IAS working group. The US National Institutes of Health (NIH) is funding
cure-related research to the tune of $13 million a year out of its $3.5 billion annual AIDS research budget, with the Bill and Melinda Gates Foundation and the California Institute for Regenerative Medicine contributing comparable amounts. The Rome meeting should help
researchers nail down “several specific areas or projects that should be developed,” Margolis says.

The AIDS Policy Project, an advocacy group in Philadelphia, has been lobbying for the NIH to raise its investment in cure research to $240 million a year.

Cure-related research takes various forms. As researchers have grown better at suppressing HIV activity with antiretroviral drugs, they are now reaching for other tools that might draw out the virus from its cellular hiding places in order to destroy it. Margolis and his
colleagues, including Daria Hazuda of the drug giant Merck, have patented a therapy using a leukemia drug called Zolinza (vorinostat) because it forces dormant, HIV-hosting immune cells into dividing and exposes the virus to a possible sterilizing cure. “Purging is going to
be one approach, but there are going to be others,” says immunologist James Hoxie of the University of Pennsylvania School of Medicine in Philadelphia, including gene therapy that modifies a patient's immune system with mutant genes that help keep HIV under control, without antiretroviral drugs. “The people who control funding need to take advantage of extraordinary events,” such as the successful gene therapy reported in Blood, Hoxie says. “This should encourage additional funding, not remove it from other programs.”

Deenan Pillay, a virologist at University College London, argues that the idea of clearing HIV in the body head on, which has not been accomplished with any other virus, is “nice to rationalize by saying it's more cost effective” than lifelong antiretroviral treatment. “But
the big issue in HIV is not necessarily eradication versus treatment but rather making the benefits of treatment available worldwide,” he says. Achieving either one will require prioritization. “If we want to do it properly, the best way is not to look at who can give more money,” Audoin says, “but first to agree on what the scientific strategy should be and what we really want to achieve.”

Jon Cohen will host web chat

2011-05-06T06:31:00.000-04:00

Please check out this web chat on cure research hosted by Jon Cohen, a great AIDS science writer.

3pm EDT, Thurs, May 12, hosted by Jon Cohen:
http://news.sciencemag.org/sciencenow/2011/05/live-chata-new-push-to-cure-aids.html

Live Chat: A New Push to Cure AIDS - ScienceNOW

news.sciencemag.org

TODAY: Follow our AIDS cure conference in Palm Springs

2011-04-09T13:14:00.000-04:00

Hi,

We are helping run an AIDS cure conference in Palm Springs, CA today. Rick Loftus, MD our board member, is giving the plenary; we have a session at 11:45 AM Pacific Time.

Our members will be tweeting out of the conference all day--check out our Twitter feed at:

http://www.twitter.com/AIDSPolicyProj

Seriously worth reading: Short comment left tonight on our blog post in POZ

2011-03-23T22:13:00.000-04:00

This was left at the bottom of the POZ blog post written by Winstone Zulu and myself (link to it is here):

"Why is all the important research on treatments, vaccines and microbicides? What about me who is already infected?"

I think we're afraid of sounding bitter, or of sounding like we want others to get the disease, but this is an important question we need to be asking. Why are we throwing away decades of research and countless billions of dollars on preventative measures which lead nowhere when there are so many promising cure opportunities that will save EVERYONE? I think a lot of us who are poz are so ashamed of our status that we're afraid to stand up and say "I DESERVE a f***ing cure. I didn't do ANYTHING that 99% of humanity hasn't done before, and I don't deserve a life of misery for it!"

Never mind the old adage that "insanity is doing the same thing over and over again, and expecting different results". Never mind the fact that increasingly, the consensus is a cure is more achievable than a vaccine. Never mind that the ONE cured person puts the precendent for a cure light years ahead of prophylaxis with a fraction of the resources devoted to it. I think we need to take back our dignity, and say we deserve a normal life. We deserve a cure. "Take Ownership" of your means of infection all you want, but at the end of the day, you didn't bring this on yourself any more than anyone else who has ever had sex.

--Andy

Zambian Activist Talks about the Cure

2011-03-15T20:53:00.000-04:00

Winstone Zulu. (Photo: Susan Cole/PositiveNation)

Winstone Zulu, a longtime Zambian activist, and I have been working together since 2009. Winstone was the first publicly HIV-positive person in Zambia, and has been commended by Nelson Mandela for his work. A few days ago, when he was sick, we hatched a plan to write a blog post together for POZ. You can read the post at http://blogs.poz.com/aidspolicyproject/

It's a long post because both of us talk, but it's interesting because Winstone, who gets around on crutches (and used to use a wheelchair), paints a picture of his daily life as he struggles as a longterm survivor who is living a life a bit like someone with AIDS in the US in, say, 1990. Winstone is a brave and brilliantly articulate person literally on the front lines of this pandemic in so many ways. He also has a great sense of humor and he's tough and strategic. So it is fun to work with him. Check out the blog post and see what you think.

Something to note: There are shock waves in communities that learn that a cure for AIDS is not a top funding priority for the National Institutes of Health. This is something that US communities of people with AIDS share with their counterparts in Zambia.

One more thing: The AIDS Policy Project is holding a conference on AIDS cure advocacy on May 28, 29, and 30 in Philadelphia. Contact me at Kate at AIDS Policy Project dot org if you want more information. We will be featuring talks from top researchers and major AIDS activists. Everybody, and we mean EVERYBODY, is welcome. Should be pretty cool.

Oh--here are our tips from the end of the post:

What can you do to advocate for a cure for AIDS?

1. The most important thing you can do is call up and make an appointment to make an appointment to meet the staffers of your US Senators and Congresspeople (if you are lucky, you will meet with the member of Congress herself). Bring a small group with you of good talkers: people with AIDS and their allies (the head of an AIDS NGO, an activist, a faith leader, a physician, a researcher, etc.) to visit your member of Congress and educate them about this problem--You can read and bring along fact sheets and reports from our web site, at www.AIDSPolicyProject.org.

Have a pre-meeting to plan what you want to say, be sure to ask for more money, and give each person a speaking part. It's easy, fun, and powerful. Activists are calling for an increase in AIDS cure research funding to $240 million, using funding left over from the NIDA and the NCRR. Email us at info@aidspolicyproject.org if you need help with this.

2. Spread the word about this situation to your friends and the leaders at your local AIDS service organization. Bring fact sheets to your support group and your doctor.

3. Read our report, "AIDS Cure Research for Everyone." Write letters to the editor about a cure; blog and tweet about it.

4. Come to our AIDS Cure Activist Conference! The AIDS Policy Project is organizing an AIDS cure activist conference on May 28, 29, and 30, 2011 in Philadelphia. Join us, as together we work in solidarity with activists like Winstone. A cure isn't just a research issue or a US issue. It's a global health issue. For more information, contact kate@aidspolicyproject.org.

Don't Say Cure: Questions for Jay Lalezari, MD

2011-03-01T12:29:00.001-05:00

Jay Lalezari, MD

Jay Lalezari is a longtime AIDS researcher from San Francisco. In “We Were Here,” a new film about the early days of the AIDS epidemic, he appears in a photo of the founders of UCSF's legendary Ward 86, the AIDS hospital ward that became a model for the world. These days, he runs dozens of clinical trials on HIV and hepatitis as Director of Quest Clinical Research in San Francisco.

Yesterday morning, February 28, Dr. Lalezari presented groundbreaking data from an AIDS eradication study at the Conference on Retroviruses and Opportunistic Infections (CROI) in Boston.

Here’s how his study worked: Dr. Lalezari removed some CD4 cells from six, brave, long-term survivors with zero viral load, then sent the cells to a lab where the CCR5 receptors were removed from the cells using zinc finger technology--a pioneering gene manipulation technique invented at Sangamo Biosciences. The lab froze the newly CCR5-less cells, and mailed them back to Dr. Lalezari, who thawed them out and infused them back into the patients. Remember—the Berlin patient was treated with a bone marrow transplant using a donor whose cells lack the CCR5 receptor. CCR5 is one of the major receptors that allows HIV to infect cells.

The goal? To see if the system (remove cells, mail, alter, freeze, mail, thaw, reinfuse) actually worked. To learn whether the therapy was safe. And to see if the altered cells spread throughout the body, and engrafted. The long-term goal is to give the patients a reservoir of HIV-resistant cells.

The study succeeded on all counts. Says Dr. Lalezari, “We showed that infusion of modified cells was safe. And we‘ve shown a number of promising data results—increased CD4 count [5 of the 6 patients received increases of 100 CD4 cells for the length of the study], expansion of the cells by three fold, persistence of the infused cells, and the migration of cells to the gut.” The gut is a major reservoir of HIV.

KK: What are next steps?

JL: I caution people about throwing around the C word –I work with people with AIDS every day. I know the effect we have when we talk about a cure as researchers. That’s different from what you can say as an activist.

This could all eventually lead to nothing. But we’ve proven the loop can be completed. The next step is to test the therapy in treatment-naïve patients. What will those cells do in the presence of virus? Presumably they will expand even further. In the presence of HIV, they obviously have a selective growth advantage. We should see even more expansion [than the data presented today].

The whole shooting match is what happens to those viral loads. If those viral loads come down, you and I are living in a different universe. If they don’t, I don’t think there’s any gray area.

The new study will enroll 14 patients who are either treatment-naïve or have been on previous therapy but then stopped. They must have CD4 cell counts over 500 and be in an early stage of disease.

KK: How are you able to accrue patients easily when many research sites struggle to enroll patients in cure studies?

JL: It’s all about how you handle people. People who come to my office get a lot of loving. We treat people with respect. We have a great staff. We have dogs running around. We’re not big and academic, with waiting areas and paperwork. People respond to that—they respond in kind. We have great employees, too. [Quest’s oldschool web site kind of tells the story: http://www.questclinical.com/ ]

KK: What are some of the logistical barriers to this research for you?

JL: I’m running 23 studies right now. Too often, researchers end up designing studies that are unenrollable. Because the people who are designing the studies are giving priority to scientific integrity without any real thought about how patients might see a study design or what might be in their interest. And there isn’t a balance between the competing needs of what you really need as a secondary endpoint and what is practical and feasible for patients. For Hepatitis C, for example: Study designers might really need to know Day 28 viral load. But then they decide they also want to know about the effect of interferon and riboviron. And then they can’t enroll that study. If they just stuck to the primary endpoint they’d be ok. But people pile on secondary endpoints.

KK: Have you met Gero Huetter?

JL: I haven’t. The fact that re-transplanted the the Berlin Patient after the first transplant failed to cure the cancer [but had cured the AIDS] shows what kind of person he is. Thank you, Gero.

But the Berlin Patient was about the virus running out of targets because of the ablation of the patient’s immune system. The new research is going to be about generating HIV–specific effector cells.

KK: Can people volunteer for your new AIDS study?

JL: If you live in the Bay Area and you’re treatment naïve, give me a call.

KK: If you had $15 million to spend on AIDS cure research, what would you do?

I would want to understand elite controllers better. What are the immune correlates of elite controllers?

Sangamo Press Release

2011-02-28T11:39:00.000-05:00

We will be blogging the Conference on Retroviruses and Opportunistic Infections, which is happening right now in Boston. But first, we want to post a Sangamo press release. Anyway, more later.

February 28, 2011

Sangamo BioSciences Announces Presentation of Positive Clinical Data From Novel ZFN Therapeutic Approach for the Treatment of HIV/AIDs at Conference for Retroviral and Opportunistic Infections

First Steps in Development of a 'Functional Cure' for HIV/AIDS: Demonstration of Successful Engraftment and Expansion of ZFN- CCR5-Modified T-Cell Product, SB-728-T, with Durable Improvement in Total CD4+ T-cell Counts and CD4:CD8 Ratios

RICHMOND, Calif., Feb. 28, 2011 /PRNewswire/ -- Sangamo BioSciences, Inc. (Nasdaq: SGMO) announced today the presentation of positive preliminary clinical data from its Phase 1 trial (SB-728-902). The trial is being conducted in immunologic non-responders, HIV-infected subjects who are currently on highly active antiretroviral therapy (HAART) and have undetectable levels of virus but suboptimal CD4+ T-cell counts. The study is designed to evaluate safety and clinical outcomes of Sangamo's zinc finger nuclease (ZFN)-generated CCR5-modified, autologous T-cell product (SB-728-T) for the treatment of HIV/AIDS. CCR5 is the major co-receptor used by HIV to infect cells of the immune system.

"These compelling data provide a mechanistic 'proof of concept' for this novel approach to HIV therapy which shows the most promise of any yet tested," stated Carl June M.D., Director of Translational Research at the Abramson Family Cancer Research Institute at the University of Pennsylvania School of Medicine, and an investigator in a second SB-728-T Phase 1 trial that is led by Pablo Tebas, M.D. at the University of Pennsylvania.

"From a single infusion of ZFN-modified cells, substantial and sustained increases in total CD4+ T-cell counts were observed in most subjects. This improvement is greater than we have seen in any previous adoptive T-cell approach. The data are consistent with CCR5-ZFN-modified T-cells being resistant to HIV infection and having a selective advantage in the presence of the virus — just as we saw in the preclinical studies. This is very encouraging as we continue to evaluate the drug in HIV-infected subjects with active infections."

Summary of Clinical Data

The data demonstrate that a single infusion of SB-728-T was well tolerated; the CCR5-modified cells successfully engrafted in all subjects and resulted in a durable improvement in total CD4+ T-cell counts in five of six of the subjects analyzed. In addition, five of the six subjects also exhibited sustained improvements in their CD4:CD8 T-cell ratio, which is an indicator of immunologic health. The ZFN-CCR5-modified cells also exhibited normal T-cell growth kinetics and trafficking and were observed to undergo selective expansion in the gut mucosa, a major reservoir of virus in the body, suggesting, as predicted, that the cells were resistant to HIV infection. These data represent the necessary first steps in the development of a "functional cure" for HIV/AIDS by providing a protected CD4+ T-cell population in these subjects that is resistant to HIV infection.

http://investor.sangamo.com/releasedetail.cfm?ReleaseID=553112

Is AIDSWatch Keeping Up? - AIDS Policy Project

2011-02-09T18:29:00.000-05:00

We approached the National Association of People with AIDS several weeks ago, asking them to include AIDS cure advocacy in the agenda for their national AIDS lobby day, AIDSWatch. A number of major U.S. AIDS organizations wrote letters in support of this idea. NAPWA said yes. But a few days ago, they reversed this decision (you can read their explanation below).

You will not see another group speaking truth to power in this way. We believe very strongly in solidarity and have a long track record of practicing it. But however strong or weak they are, NAPWA, in addition to a tiny group of other national advocates, does influence whether or not there is money for AIDS research, for treatment (there are currently 6,000 sick Americans with AIDS on waiting lists for their drugs), housing, and other critical services that keep people with AIDS alive. Decisions about AIDS research, including the search for a cure, have implications for people with AIDS around the world.

We hope that NAPWA will change its mind.

You can read the comments about this blog post by going to www.POZ.com.

Is AIDSWatch Keeping Up?

By AIDS Policy Project on February 8, 2011 6:47 PM | 4 Comments

By Jose De Marco and Stephen J LeBlanc
(Members of the Board of Directors, The AIDS Policy Project)

Just three years ago, everyone thought a cure was a distant dream.

But the case of the Berlin Patient, cured of AIDS in 2007 and HIV-free today, has inspired new research in laboratories from San Francisco to Melbourne, Australia. An activist campaign is calling for $240 million for AIDS cure research at the NIH, funded with money from a department that is being shut down. People affected by HIV are becoming aware of the possibilities. A recent poll by the National Minority AIDS Council showed that fixing ADAP and an AIDS cure were the top two policy priorities of its constituents.

But you won't find anyone talking about a cure at AIDSWatch, the annual lobby event organized by the National Association of People with AIDS. Starting February 16th, it promises to advocate for "the most crucial issues facing the 1.3 million people living with HIV/AIDS in the United States." A cure is not on their list.

Four hundred people with AIDS and their allies will fan out across Capitol Hill to talk about the need for AIDS funding with their legislators. But despite letters of support from organizations of people with AIDS ranging from ACT UP Philadelphia to the National Minority AIDS Council, NAPWA has declined to include AIDS cure research on the agenda for discussion or for lobbying. Their agenda is set, they say. According to one organizer, there is no time for a speaker to discuss AIDS research, let alone the cure. He told us there will be no specific dollar requests in the lobby visits. Otherwise, volunteer lobbyists would suffer from "information overload."

Funding for the National Institutes of Health has been stagnant since 2003. The NIH's main AIDS research division, NIAID, must reject funding for 77% of the AIDS research grant applications it receives because there is no money to pay for more.

Worse, the NIH spends only 3% of its AIDS research budget trying to find a cure for AIDS. Three percent. There is no commitment yet to increase this funding, even as the entire field has been reinvigorated and exciting research is being proposed in labs all over the world.

Only 5 million of the 33 million people with HIV worldwide currently have access to AIDS meds. Only 1/3 of the very sick receive them. In 2009, nearly 2 million people died this way.

We need a cure.

Congressional briefings, paid lobbyists, and advocacy reports have not, so far been enough to increase federal funding for the NIH, let alone AIDS cure research. With Congress trying to cut spending back to 2008 levels and some members of Congress trying to de-fund the US Agency for International Development (and therefore US-funded global AIDS treatment), what else can we do? What could work?

Hundreds of thousands of people care about AIDS in this country. We need to leverage their voices to loudly, publicly, and specifically call for more AIDS funding--for the ADAP, for housing, for the NIH, and for a cure. This movement requires the grassroots power of people with AIDS. Expertise is essential--but expertise without political power cannot get the goods.

NAPWA must reverse its mistake and include AIDS cure research, and indeed overall NIH funding on its agenda for policy briefing and lobbying on February 16th-18th. Research advocates want to share what they know with the hundreds of people with AIDS making the trip to Washington from states across the US. We want them to talk to their representatives in Congress about AIDS cure research, and the need for more NIH funding. The fact that there are promising research avenues for a cure for AIDS that remain starved for funding will come as news to nearly all of them.

AIDSWatch is the only national AIDS lobby day we have. It is a critical chance for people with AIDS and their allies to push for funding and educate Congress about the issues. Including progress toward a cure.

The NIH, despite its meager financial commitment, is still the leading funder for cure research worldwide. AIDS research is a global issue. What happens at AIDSWatch affects the world, but the world doesn't have a say in what is on the agenda at AIDSWatch.

Political power, including focused grassroots power, is critically needed to move funding for an AIDS cure forward. Hundreds of people coming to Washington in two weeks can help--if they get the chance.

APP on: On the Web

And so this is Christmas.

2010-12-12T20:14:00.006-05:00

Dear Friends,

Please make a donation to the AIDS Policy Project and join our campaign to push the search for a cure for AIDS. Your money will go straight to bold, effective, and original activism.

We are shaking things up. We are working with the world’s leading researchers and reminding them that the world still desperately needs a cure for AIDS. We are calling out the National Institutes of Health for spending only 3% of its AIDS dollars to actually find a cure—a fact no one knew until we got the information after a five-month campaign.

In one year, we've put the cure back on the map in the AIDS community and we’re helping to make the cure cool again in the research community. Our campaign was on the cover of POZ Magazine. Our executive director was chosen as one of the top 100 activists in the US. Researchers are citing our influence in their own articles. This blog even won an award; it's read from San Francisco to Soweto.

Please join us to fight for a cure for AIDS. Make a tax-deductible contribution to the AIDS Policy Project:

We are calling for more funding for the science, and new models of medical research that encourage collaboration and move faster. We are helping scientists remove bureaucratic roadblocks that prevent them from pushing forward toward a cure. With your help, together, we can do it.

We are doctors and nurses, longtime AIDS activists and college students--the only organization laser-focused on a cure.

Happy holidays. It's time for a cure!

Kate Krauss, for everyone at the AIDS Policy Project

AIDS Policy Project

5120 Walton Avenue

Philadelphia, PA 19143

tel: 215-939-7852

(we have members all over the US)

White Paper on New Models for Accelerated Drug Discovery and Development Is Released

2010-12-03T15:50:00.000-05:00

Kauffman Foundation: "Five leaders in the medical innovation field released a white paper today titled The New Role of Academia in Drug Discovery and Development: New Thinking, New Competencies, New Results. This white paper reflects key recommendations from a July 2010 town hall meeting in Kansas City hosted by Friends of Cancer Research, Kansas Bioscience Authority, The University of Kansas Cancer Center, Ewing Marion Kauffman Foundation and Council for American Medical Innovation.

"The white paper outlines how government, nonprofit organizations and academic institutions can define new models of working with the private sector to enhance drug development efforts and bring safer, more effective drugs to the market more efficiently. ...

"'This white paper outlines critical steps toward much-needed increased interagency collaboration,' said Dr. Ellen Sigal, Chair, Friends of Cancer Research. 'The proposals discussed within this document aim to accelerate the process to help get scientific breakthroughs to patients. The message is clear; without collaboration among all agencies and academic centers, the full potential of biomedical research may be stifled.'"

More info: http://www.focr.org/kansas-town-hall.html

Speech on a cure for AIDS to the Philadelphia Town Meeting.

2010-12-02T22:28:00.006-05:00


Local medical students listen to Dr. Kostman at our town meeting. Photo by Harvey Finkle.

There's lots more to say than this--I could talk about the need to actually support (and not just say one supports) new ideas, and back them up with funding. Like the idea that has, so far, cured the Berlin Patient of AIDS. Or the new idea that is curing mice in Southern California. Even if those ideas come from regular doctors, and not AIDS researchers. Or from brilliant researchers who are starved for funding simply because they live in Europe and not the US.

I could talk about the obstacle course thrown up by funders, institutional review boards, the FDA, and other bureaucracies in front of even the best researchers and the most brilliant ideas. We need the brightest scientists, not people who are smart at negotiating red tape or gaming the system because they have to. We are at a pivotal moment in the AIDS pandemic--a moment of great opportunity, if we recognize it, and act.

A cure for AIDS, whether it is developed in Bethesda or Madrid, would save 30 million lives and the US government $17 billion per year. Yet the NIH is spending only $40-$60 million on AIDS cure research. Where are the great philanthropists to support a cure? We need you. We also need President Obama, federal officials, and drug companies to step up. We saw that President Obama called for a cure for AIDS in his World AIDS Day proclamation--the first time a cure has been mentioned since at least 2005. But without the proper support, including more funding, we will lose an opportunity to save millions of lives.

Can we be the generation that ends the AIDS pandemic?

Here's what I said to our friends in Philadelphia, many of whom are AIDS prevention activists, at our town meeting on a cure.

I'm Kate Krauss, Director of the AIDS Policy Project, and I want to welcome you to the first Philadelphia town meeting on AIDS cure research. I want to thank ACT UP Philadelphia for co-sponsoring this with us and Dr. Jay Kostman for giving us a presentation on the science. I also want to thank my colleague Jose Demarco for his remarks.

The AIDS Policy Project has launched a campaign for a cure for AIDS. It started in Jose’s row house living room in Kensington on a freezing day a year ago. And it’s taking off. Last night I was Skyped at 3 am by an activist in Pakistan who wants to organize people with AIDS in that country to support this campaign.

We strongly support prevention, including vaccine research, and universal access to AIDS treatment. Several of us are front-line needle exchange workers and prevention policy advocates. But we need a cure.

We thought a cure was a lost cause. But all this time, the research has quietly been clicking along.

Ten years ago, an American scientist discovered a mutation that makes the person who is born with it-- immune to AIDS. It’s called the CCr5 deletion.

Three years, ago, a doctor used a bone marrow transplant, and a donor with that mutation, to cure a man with AIDS. The man who is cured, who is nicknamed the Berlin patient because he lives in Berlin, is alive and well, has no HIV in his body, and is moving to San Francisco as soon as he can get health care. His treatment was risky and it was expensive, but make no mistake--it was a breakthrough-- a “proof of concept.” As the reporter Jon Cohen put it, “you only need to see one talking dog to know that dogs can talk.”

Now there are researchers following up on the case of the Berlin Patient at Penn, the University of Southern California, Quest Clinical Research in San Francisco, and UCLA. They are removing immune system cells from patients, using genetic engineering to mimic that mutation—they’re removing the CCr5 receptors, and infusing those cells back into patients. To cure them. Will it work? We don’t know yet. As Einstein said, “If we knew what it was we were doing, it wouldn't be called research, would it?”

But it is exciting, and we have an opportunity here. And there are other interesting approaches to finding a cure that are now being investigated, and which Dr. Kostman will discuss.

Since we launched this campaign, we’ve learned that the National Institutes of Health did not track how much money it was spending on a cure. No one there seemed to know how much they were spending. After a 5 month effort that included repeated phone calls and letters, appeals to Congressional staffers, Freedom of Information Act requests, and Larry Kramer, the AIDS Policy Project got the goods: The NIH spends only 3% of its AIDS research budget on a cure. Three percent. They talk a big game. But 3% speaks for itself. Under pressure from us, the NIH has agreed to track their spending on a cure from now on.

This small amount of funding means that new ideas and young researchers get short shrift. Even major researchers have to compete against each other for small amounts of money, when they might otherwise all be funded. When we started this campaign, some of the scientists we spoke to were demoralized. I've spoken to a couple who have considered abandoning the field for these reasons--the field of finding a cure for AIDS. Since the research has gotten more attention, because of activism, because of coverage in the scientific press and in new conferences focused on a cure, I think there is more momentum and excitement. But there’s not more money, yet.

We’ve learned that most drug companies don’t invest in a cure but pump billions of dollars into treatments. That’s where the money is. As one drug company exec put it, half seriously, "It’s the perfect model: You have to take an expensive pill every day for the rest of your life or you die." It’s a lot easier to come up with another treatment than risk your investment trying to find a cure. But some companies are investing in a cure, like Gilead and Sangamo. We need more companies to step up and invest in this research and get us to the finish line.

We have learned that in the US, collaboration among AIDS researchers, which would speed the research, is discouraged by the system they work in, where they must constantly compete, and hoard data until it can be published in a prestigious medical journal. We’ve learned that major discoveries at the test tube level may never get picked up for testing in people—or it might take years. Even though those clinical trials would only involve 5 or 10 people and a few months. [AIDS vaccine trials require thousands of people and years.] Research in other diseases doesn’t work this way—they do things differently in multiple scleroris research. They do things differently in Europe. We have to do things differently in AIDS.

Maybe most importantly, and most shockingly, we have learned that many researchers are under the misapprehension that people with AIDS don’t need a cure. The treatments are so great! We’ve even spoken to decisionmakers at the NIH who believe this. But ask a group of people with AIDS, in New York or in New Delhi. I stunned a group of people with AIDS last week at a downtown Philadelphia AIDS organization when I told them that researchers don’t think we need a cure. They were silent, and then they got on the internet while I was still talking and started typing Facebook messages to researchers.

While the drugs are saving lives, AIDS remains deadly and disfiguring, even in the US. People with AIDS suffer from lethal, AIDS-related lymphoma and liver cancer; heart attacks, dementia, and other severe problems. Many of us have friends who died this year. We need a cure.

Thirty-three million people have HIV worldwide. Most do not have access to excellent treatment. They’re dying. In many communities, they don’t even have access to hospital beds with mattresses on them. Many of the people who have treatment this year have no idea where the treatment is going to come from next year, or every year for the rest of their lives. We need a cure.

Researchers need more money to finish the job of finding a cure for AIDS. They need to be reminded that the world still needs a cure for AIDS. We need to cut the red tape so that the researchers can work quickly. What we do now as a community will influence whether the cure for AIDS is available in 5 years or 30; it will dictate who survives this pandemic and who does not. The clock is ticking.

So as a community—what are we going to do? We have some ideas, and we want to hear your ideas after Dr. Kostman makes his presentation on the science.

Pick up the letter sitting on your chair. It’s a letter to Francis Collins, the head of the National Institutes of Health. He needs to be nicely reminded that we need a cure NOW. That millions of people in developing countries are dying of AIDS without treatment. That for millions of people it’s not great drugs versus a cure, it’s nothing versus a cure. We are calling for $240 million in direct AIDS cure research funding. Please write a personal note at the bottom, sign the letter, print your name and address (so they realize you are a real person), and hand it Caryn, our intern.

Spread the word: When you go home, contact friends who can sign this letter. Send them this link:
http://bit.ly/dbVdt0

It's all they need. [OK, during the actual speech, I gave them our web address.

This research will continue to meander along, or together, we can light a fire under it. Please make a financial contribution to the AIDS Policy Project to support this campaign for a cure. You can donate on our web site at: www.AIDSPolicyProject.org dSpread the word.

Finally, I want to quote Winstone Zulu, an AIDS activist in rural Zambia and the first person with HIV in Zambia to publicly come out as HIV-positive. He is a father of four who has access to AIDS medications but is barely surviving bouts of meningitis:

"Yes, yes, yes. We badly need need a cure. Why is all the important research on treatments, vaccines and microbicides? What about me who is already infected? Please send us details of how you are pushing this agenda and we can take up here as well. The world will likely to react faster if it hears the same message coming from all corners of the earth."

"Time for a cure!" - Winstone

Kate Krauss
The Friends Center
Philadelphia, Pennsylvania
November 18, 2010

Winners: Who HAS doubled the budget of the NIH?

2010-11-22T12:17:00.003-05:00

The National Institutes of Health has been flat funded since 2003, and due to high biomedical inflation, the lack of money is eating into major research opportunities for major diseases, a fact that has somehow escaped the attention of the American people.

Love him or not, former Representative Newt (short for Newton) Gingrich helped double the size of the National Institutes of Health when he was Speaker of the House of Representatives. We at the AIDS Policy Project always like to identify who actually did what.
This is a two-year old article, but instructive for researchers, NIH officials, research advocates, and people affected by life-threatening diseases. People with AIDS, for instance, had no idea that a billion dollars wasn't being pumped into finding the cure at the NIH. It isn't. (Check out our report, "AIDS Cure Research for Everyone: How It's Going, and Who's Paying for It.")

The other half of this equation is President Bill Clinton, whom we will discuss later.

Prizing American Science

Science 2008 / by TJ Kelleher / November 5, 2008

Newt Gingrich discusses the potential of the US Congress to shape science research.

©Callista Gingrich, Gingrich Productions

Newt Gingrich was a member of the US House of Representatives from 1979 to 1999 and Speaker of the House from 1995 to 1999. Although Gingrich is perhaps best known as a lead author of the Contract with America or for his sometimes rancorous battles with Bill Clinton, his long experience in the political sphere and deep interest in science policy, health care, and environmental issues make his perspective on science and the American experiment an insightful one. Gingrich spoke with Seed senior editor T.J. Kelleher about the threats and possibilities facing US scientists and policy makers.

Seed: Science seems caught up in an electoral system that’s inherently subjective. How does objectivity survive?

NG: First of all, science is permanently evolving. So, you have constant arguments. I think that you rely on institutions like the National Academy of Sciences, but you also rely on the honest debate between outliers, because sometimes the vast majority of eminent scientists are just plain wrong.

You have to draw a distinction between scientists who have political opinions, in which case they are citizens exactly like movie stars, business leaders, trial lawyers, and anybody else, and scientists who are offering a debate based on fact and based upon theoretical construct. I mean, most of the Union of Concerned Scientists’ activities are politics, not science. They’re describing a group of people whose occupation brings them together. One must always ask, what’s the topic we’re talking about? What are the facts around that topic? And what are the scientific analyses that interpret those facts?

Seed: What advantages does a scientific background grant to legislators?

NG: It gives them some prestige in discussing science issues. It gives them some specialized knowledge in their field of study. But remember, these specialties nowadays change so rapidly that if you’ve gone off and become a politician, you may or may not be current, though you at least can ask really good questions. But even if their occupation or training loans them some prestige, it doesn’t extend to every question. Consider the medical doctors who serve in the Congress. We may or may not agree about politics, and they may or may not agree among themselves. It’s one thing to say that I’d like them near me if I had a heart attack, but just because of their training, I’m not sure I would want their views — or agree with their thinking — on how to reform the health care system.

Seed: How can a congressman who doesn’t have any specialized background stay scientifically informed?

NG: Ideally, they should talk to scientists. I, frankly, was opposed to the Office of Technology Assessment because I thought it was bureaucratized and political. But every congressional district has a substantial number of scientists who are either teaching or doing lab work, or are in some way engaged — there are remarkably few districts that don’t have a significant number of scientists in them. Congressmen should go to places like the National Academy of Sciences and the specialized groups — I talked last year to the Society of Vertebrate Paleontology, for example. You pick up the phone and call the president of MIT or Georgia Tech or Cal Tech or you name it, and you say, “So, who are your five best people in this topic?” It’s networking. Politicians are, by definition, generalists. And it’s a process of learning how to find the right people, ask the right questions, and then draw conclusions based in general wisdom and general experience. Take the Endangered Species Act. E.O. Wilson and a handful of other scientists were decisive in preserving it, and although no congressman had to automatically agree with his particular view, everyone had to take it seriously.

Seed: How can the average scientist best influence policy?

NG: Every scientist ought to be a citizen two or three days a year and see their two senators and see their House member, as citizens, and legitimately represent their beliefs about science and their beliefs about research investment and their beliefs about education reform. And they shouldn’t tell us they’re too busy being scientists to be effective citizens. That’s nonsense. If they did that, they would have a very substantial impact on the political structure.

Seed: Without getting involved permanently.

NG: Right. If scientists showed up at every town hall meeting, and scientists wrote their House member and their senators, they would have an impact.

Seed: You’ve talked about the importance of government backed prizes for scientific research. Do you see that as supplanting the traditional, National Science Foundation (NSF)/National Institutes of Health (NIH) model?

NG: It should be parallel and competitive, but not supplanting. We should look seriously at the peer review model. And we should seriously reconsider who is awarded grants by setting a substantial percent of NSF and NIH and other kind of grant programs aside for scientists under 40. We now have dangerous bias in favor of older scientists, both in terms of who gets attracted to the career, and of the opportunities that might be missed. I operate on the absolute premise that we’re going to get four to seven times as much new science in the next 25 years as we got in the last 25 years. That means we’re going to witness constant paradigmatic shifts, and the younger scientists are important in dealing with that.

Seed: How do we make sure that those younger scientists are engaged and supported?

NG: First, by making the NSF bigger. The greatest single mistake of my Speakership was not tripling the size of the NSF when we were doubling the NIH. Second, I think, we need to be giving direct grants to scientists under 40. A lot of these guys are getting small grants because they’re actually working for senior scientists. So, we kind of have indentured servitude of graduate students and of young scientists. Third, we ought to encourage research in the private sector with a permanent R&D tax credit. And you combine that with a robust program of prizes.

Seed: What about the position of presidential science advisor? What are your thoughts on a position that is, in some sense, the face of science for the US?

NG: Well, I don’t think they’re the public face of science any more than the head of NSF, NIH, or NASA. There are lots of faces of science. Ideally, we would have senior science administrators. Great science advisors have focused their energy on a handful of very large breakthroughs. Vannevar Bush’s ability to informally migrate through the system and educate people into the right strategies was breathtaking. Both Eisenhower’s and Kennedy’s science advisors were more mature, strategic advisors than we’ve had in recent years. It’s become kind of a politicized position as opposed to a science position.

Seed: David King, the former UK science advisor, saw what he called “silo walls” around different executive science offices. How do we break down those walls?

NG: I think that it would be useful to have some kind of coordinating council among the sciences in the federal government. We have too many vertical silos and, frankly, vastly too much bureaucracy. The bureaucratization of DOE has been a disgrace; the bureaucratization of NASA has been a disgrace. These become moribund, aging, and sort of permanent paper-shuffling institutions that don’t necessarily move forward the big gains. That’s sort of why I like prizes, because prizes allow anybody who wants to compete to do so without prior approval. And you just get a much richer and more dynamic milieu.

Seed: How do we decide where to make the large, but still finite, investments that the US government can make in science?

NG: We need to rethink how we make public investments. Let me give you an example. We have an Alzheimer’s study group at the Center for Health Transformation, which I helped found. And Alzheimer’s for the baby-boom generation will be a $1.2 trillion cost to the federal government under current projections. If you can postpone Alzheimer’s onset by five years, you eliminate half that. So, that’s a $600 billion savings. What would a reasonable investment be up front, to save $600 billion? And why would you score that competitively against the next six pork-barrel projects?

Education investments are another critical area. I’ve argued, in fact, that the secretary of defense should do an annual report on math and science education, and an annual report on fundamental research, because those are national security issues at least as much as Iraq or Iran; failure of math and science education is a greater threat than any conceivable conventional war. I’ve also proposed that we pay science majors in high school as though they were earning a stipend. If you’re willing to take calculus and you’re willing to take chemistry, and you’re willing to get good grades and you’re willing to be smart, why aren’t we paying you?

Seed: How can politicians transcend partisan roles to address these difficult but really nonpartisan issues facing American science?

NG: You have to start with the willingness to find good things you can agree on. Spend a couple days a week doing good things, then spend a couple days a week fighting.

The clock is ticking.

2010-11-14T19:41:00.003-05:00

On Friday, I was in downtown Philadelphia with my colleague Jose Demarco talking to the staff and clients of a local AIDS organization; we have a town meeting this Thursday. I was explaining the case of the Berlin Patient and the follow up research taking place. People were fascinated, and a small crowd gathered around me.

One man said, "My partner has that, (the CCR5 deletion that helped cure the Berlin Patient), and we're always trying to enroll in cure studies, but no one seems to be interested." I said that we are going to be collecting a list of people who want to participate in cure research.

Then I pointed out that many researchers don't realize that people with AIDS still need a cure, since there are effective treatments. The group fell silent. They were stunned--They could not believe that researchers didn't know that they desperately want a cure. Then there was a flurry of conversation and people wanted to know how they can send a message to researchers that people with AIDS need a cure.

We talked about what it's like to have HIV, even if you have access to AIDS meds. You could have an AIDS-related heart attack, or get lethal liver cancer or AIDS-related lymphoma that your body can't fight off. I have lost friends this way. A lot of people seem to be developing cognitive problems, including dementia. You can get facial wasting, or wasting through your whole body, or a hump on the back of your neck that tells the world you have AIDS. People seem to slide ominously from youth to old age.

Picture these people in the hundreds of thousands.

But the US is only a sliver of the global AIDS epidemic: We are home to about 1/33 of the people with HIV in the world. Of the roughly six million people who urgently need AIDS drugs right now, only 20%-30% have access to medication. The others are dying. And we may be at a high water mark for access to AIDS treatment--wealthy countries are cutting funding for AIDS treatment for people in developing countries. Getting treatment will be a struggle for them for the next 50 years, if they are successful. But without treatment now, they won't live to see a cure.

When you think about AIDS cure research, remember this: The clock is ticking. For people with AIDS in the US. And for the millions and millions of people in developing countries who are dying just like it's 1989. We need a cure.

Town Meeting on a Cure for AIDS: Philadelphia (November 18)

2010-11-10T20:47:00.000-05:00

Please forward widely:

The AIDS Policy Project is sponsoring an AIDS CURE town meeting in Philadelphia on Thursday, November 18th, 2010. There is major research taking place that is pushing us closer to a cure. The stakes are huge for the 33 million people with AIDS, most in developing countries, most with no access to AIDS drugs. We will talk about the science and the global health implications of cutting-edge AIDS cure research.

Jay Kostman, MD, HIV physician and researcher, will examine the science, and activists will discuss a new campaign.

November 18, 7 pm, 1501 Cherry Street, Philadelphia, PA
RSVP: info@AIDSPolicyProject.org

Snacks will be provided.

Los Angeles Town Meeting on AIDS Cure Research

2010-11-01T23:39:00.002-04:00

TOWN MEETING ON NEW PROGRESS TOWARD A CURE FOR AIDS

November 3, 7:00 pm

Plummer Park Community Center, 7377 Santa Monica Blvd, West Hollywood, Rooms 5 & 6

The AIDS Policy Project is holding a public town meeting to discuss some exciting new AIDS cure research, as well as a new grassroots, activist campaign for a cure AIDS.

The meeting will feature a talk by two scientists, Paula Cannon, PhD, from the University of Southern California; and Dr. John A. Zaia, from City of Hope Medical Center in Duarte, CA. Both are studying ways to change the immune cells of people with HIV to make them resist HIV infection; the HIV-resistant cells would then replace infected cells. This work follows up on the 2008 case of the Berlin Patient, who was cured of AIDS through a bone marrow transplant using a donor who was born immune to HIV. The event is being co-sponsored by AIDS Project Los Angeles and CIRM, California’s state stem cell agency. The AIDS Policy Project's cure campaign is the subject of the cover story of this month's issue of POZ Magazine (www.POZ.com).

Says Kate Krauss, Executive Director of the AIDS Policy Project, “Most people don’t realize that a patient was cured of AIDS in 2008. California is leading the way in both funding and actually doing the critical research that follows up on that case and might lead to a cure for millions of people. Thirty-three million people have AIDS right now, and most can't get treatment. It’s important for the community to stand up and say, ‘we need a cure.'”

The town meeting is open to the public and anyone with an interest is encouraged to attend. While not required by organizers, RSVP emails from attendees to info@aidspolicyproject.org or call 215-939-7852. For more information about the cure campaign, see www.AIDSPolicyProject.org Please spread the word.

Elite Controllers Display Higher Activation on Central Memory CD8 T Cells Than HIV Patients Successfully on HAART

2010-10-22T04:46:00.001-04:00

AIDS Research and Human Retroviruses:: "Factors other than the size of the viral reservoir should explain the high level of activation of central memory CD8 T cells characteristically seen in HIV individuals with spontaneous control of viral replication."

Comment: It seems likely that this immune activation is helping these patients control HIV.

New HIV Eradication Study in Progress

2010-10-20T21:22:00.000-04:00

AIDSmeds: "Cytheris has announced the launch and recruitment of a new Phase II study of the company’s interleukin-7 (IL-7) drug—combined with the entry inhibitor Selzentry (maraviroc) and the integrase inhibitor Isentress (raltegravir)—with the goal of eradicating HIV."

First patient treated in Geron stem cell trial

2010-10-11T22:00:00.000-04:00

Reuters: "Geron, whose shares were up 6.4 percent on the Nasdaq late on Monday afternoon, has the first U.S. Food and Drug Administration license to use the controversial cells to treat people, in this case patients with new spinal cord injuries. It is the first publicly known use of human embryonic stem cells in people."

Our AIDS Cure Campaign Made the Cover of Poz Magazine!!

2010-10-04T20:23:00.000-04:00

Please check out www.Poz.com or get a newsstand copy--our TEN MONTH-OLD AIDS cure campaign made the cover of Poz Magazine!! There are five articles in total about a cure for AIDS.

Also consider going to our web site, pressing the donate button and making a contribution to keep us going: www.AIDSPolicyProject.org

Check back later; we will blog about the articles and also discuss the state of the campaign for a cure for AIDS soon.

Thanks to Poz for covering the research and activism that are working hand-in-hand to get us to a cure.

This Tuesday: Casual dinner to discuss AIDS cure campaign (San Francisco)

2010-10-04T00:41:00.000-04:00

The AIDS Policy Project launched its AIDS cure campaign 10 months ago, and so far, it's going amazingly well. Two of our board members, Stephen LeBlanc and John James, are in town at the same time, so we're having a super casual meeting of people who are interested in learning more about the campaign and might want to get involved. We're just going to grab dinner and chat.

Time and place:

THIS Tuesday evening at 6:30 pm at the Red Jade restaurant at 245 Church Street (it's at Church and Market Streets).

If you think you might want to come, RSVPs are useful but not necessary; shoot us an email at info@aidspolicyproject.org

Look forward to seeing you--

Katie Krauss for the AIDS Policy Project
www.AIDSPolicyProject.org

ps: Check out our report, AIDS CURE RESEARCH FOR EVERYONE, a plain-English primer on some of the stuff we're thinking about (that caught the attention of CNN). We also have a super-simple new fact sheet. Both are available at www.AIDSPolicyProject.org

An AIDS activist participates in a clinical trial for the cure.

2010-09-05T16:35:00.001-04:00

It seems like a long time, about a half of my life, that I’ve lived with HIV. Looking back on the days when HIV was not even named yet I can hardly believe I have survived this long. My struggle for survival has been rocky yet I’m lucky to be alive despite the toll on my battered immune system by a devious virus. But I’ve also been tenacious and resilient in trying drug after drug and enrolling in many risky clinical trials, always looking forward to the next treatment, making it to a ripe old age of 54.

Almost from day one I read everything there was about this disease. I ordered fact sheets from Project Inform where I am now on staff, leading advocacy efforts to find a cure. I taught myself, as many of my comrades did, to learn all there was to learn about HIV and the immune system it attacked. As a member of ACT UP I was arrested in civil disobedience actions, fighting for everything from stigma and discrimination to NIH funding and FDA inaction. Things have quieted down due to the success of the very drugs many people tested in those clinical trials. But I recognize that a life of antiretroviral medications just won’t cut it, for me and for the millions of HIV+ people, especially when there is now a concentrated effort to find a cure. I feel like we deserve an end to this fight.

Today, almost 22 years after my diagnosis I am in an early phase clinical research study to test a gene therapy concept that may lead to more answers towards a cure.

I remember when we asked if gene therapy would ever be successful for HIV. But that’s what we’ll find out in this and other studies moving forward. For me, I may be able to increase my lagging CD4 count possibly for six months to a year and maybe more, until there is another strategy. This has been my strategy for survival, one new protocol at a time, staying ahead of the game, buying time.

We have been taught to believe that since HIV integrates with human DNA that it becomes incorporated in our genetic material forever. But there is now more hope that ridding the body of HIV, or at least reaching a stage of drug-free remission, may be entirely possible.

In the study I have enrolled in, my own cells are drawn from my veins and then introduced in the laboratory to tiny molecular scissors called zinc finger nucleases that slice the gene for CCR5, a co-receptor important for HIV to grab onto, from my own CD4 cells. The changed cells are then expanded by the billions and infused back into my body with hopefully only mild flu-like symptoms the day of the infusion. Of course the long-term effects are unknown, as they were with AZT.

I have been waiting for this moment for many years before we even knew there might be a possibility for a technology that could lead to what is known as a functional cure. It is risky, but I don’t have many options that would increase my t-cells. The hope is that the CD4 cells will become resistant to HIV during their life span and my healthy CD4 cell numbers will increase until the infected cells die off. It may lead to the possibility that I can stop HIV drugs…all of these hopes still theoretical.

So, as I look back on all the successes and failures I realize that this experiment I am undertaking may also fail, but scientists will learn from the information and take it to the next step, just like all other research. But this time the information may lead to the end of this horrific pandemic that has invaded our world. And I will live on to sign up for the next research trial and continue to fight for the cure that we all need.

AIDS Quest to Kill `Sleeping' Virus Enlists Merck Cancer Drug

2010-09-04T00:34:00.000-04:00

AIDS Quest to Kill `Sleeping' Virus Enlists Merck Cancer Drug - Bloomberg: "Researchers at the University of North Carolina in Chapel Hill plan to test Merck’s drug, Zolinza, next year in about 20 people infected with HIV, the AIDS virus. The goal is to determine if Zolinza, or a medicine like it, can force HIV out of cells where it can reside, concealed from attack by potent antiviral treatments, said David Margolis, a professor of medicine who’s leading the research."

Specific eradication of HIV-1 from infected cultured cells

2010-09-01T22:30:00.001-04:00

AIDS Research and Therapy: "A correlation between increase in the integration of Human Immunodeficiency virus-1 (HIV-1) cDNA and cell death was previously established. Here we show that combination of peptides that stimulate integration together with the protease inhibitor Ro 31-8959 caused apoptotic cell death of HIV infected cells with total extermination of the virus. This combination did not have any effect on non-infected cells. Thus it appears that cell death is promoted only in the infected cells. It is our view that the results described in this work suggest a novel approach to specifically promote death of HIV-1 infected cells and thus may eventually be developed into a new and general anti-viral therapy." [full text free]

Vienna Cure Report from Project Inform

2010-08-24T21:33:00.009-04:00

One of the standing-room-only sessions on HIV cure research at the Vienna AIDS Conference. There were also dozens of people watching the session on a closed-circuit TV set up outside the door. Photo Credit: AIDS Policy Project

We are inviting a few guest bloggers who are also interested in AIDS cure research to post on our Cure Blog. Matt Sharp, a longtime AIDS activist, is the first. --Kate Krauss, AIDS Policy Project

The road to a cure for HIV, by Matt Sharp

There continues to be excitement and buzz especially in the research community regarding more understanding of the pathway to a cure for HIV. Recently, an NIH collaborative grant for cure research named in honor of Martin Delaney was announced that will provide even more federal dollars to the effort—though not enough. Advocates are scaling up their knowledge and working with the important players to lead to the most direct research path to a cure. There was an exciting workshop before the Vienna conference entitled: Towards a Cure: HIV Reservoirs and Strategies to Control Them. And while the efforts are moving in the right direction, there is a way to go to unlocking critical basic scientific and practical questions that scientists have long pondered, such as: Why there is residual virus and how is it causing long-term inflammation that eventually leads to the cause of most mortality seen in AIDS today? What are the biological keys to unlocking these problems? How can scientists work better together in a focused effort for a cure? How will studies ethically allow for cure research in people who are doing well?

Sharon Lewin from Monash University in Melbourne, Australia gave a succinct and motivating opening plenary speech stating that even treating the current 40% of HIV-positive people in low- and middle-income countries starting at the CD4 threshold of 200 cells would cost $25 billion by 2030, while increasing coverage to 80% would raise that cost to $35 billion. We cannot treat ourselves out of the epidemic as current cost projections and universal access and sustainability are improbable. She said that “while there won’t be a cure announced in Vienna, it will mark the future where we seriously prioritize finding a cure”.

Finding a cure is the new wave of HIV research and knowledge in this area is growing at every HIV meeting. Pharmaceutical companies have teams of scientists focusing on new drug targets and are screening millions of candidates that will flush HIV out of cells. Some two dozen HDAC inhibitors (histone deacetylase) are being studied to activate latent virus for these cells. Some of these compounds are also being studied in cancer. IL-7 can also activate cells and is moving forward in Phase 2 clinical studies. This is one area of eradication research that is moving ahead that many are not aware is happening.

Lessons are being learned from the Berlin “cure” patient who received a bone marrow transplant for lymphoma using HIV resistant cells. He remains free of HIV today. Several cell therapy strategies rendering HIV resistant by genetic manipulation are already in clinical studies.

Project Inform's full Vienna report is here.