This week marks the one-year anniversary of the Digital Government Strategy, and we want to take a moment to reflect on a recent White House Executive Order about open data. This Executive Order and accompanying Open Data Policy [PDF 6MB] requires that, going forward, all data generated by the federal government be made available in ways that make the data easy to find, accessible, and usable (read about it in this blog post). Executive orders are official actions through which the President of the United States manages the operations of the federal government. This Executive Order has implications for all of us.

What does “open data” mean?

Open data are complete, accessible, machine-readable, and freely available to anyone, to the extent possible without compromising individuals’ personally identifiable information and right to privacy.

It is important to note that “data” refers not only to tabular data, which is typically numerical, but also to web content (i.e. text). The move to make both numerical and text data more open has many important benefits; for example, it makes it possible to create a web page that automatically pulls together content related to a given topic or issue, such as HIV treatment or prevention.

Why is an open data policy important?

An open data policy allows individuals, businesses, nonprofit groups, and other entities to use–for free–currently existing federal data that might cost them millions of dollars to collect on their own, and then to analyze and repurpose that data for other needs. For example, decades ago, the federal government made both weather data and the Global Positioning System (GPS) freely available to anyone. Since then, American entrepreneurs and innovators have used these resources to create navigation systems, weather newscasts, location-based apps, precision farming tools, and much more.

Who needs to be involved in open data efforts?

For open data efforts to be successful, all those responsible for the domains of content, communications, and technology must be involved. With their full participation and buy-in, the move toward open data can be one of the most powerful examples of collaboration in our work.

How does an open data policy support our national response to HIV/AIDS?

The National HIV/AIDS Strategy recognizes that, in order to be effective, HIV/AIDS prevention, treatment, and care efforts must be data-driven. The Strategy calls for increased coordination of HIV programs across the federal government, as well as the development of improved mechanisms to monitor and report on progress, including streamlining and improving data collection efforts. By improving how we collect and share data between agencies and with the public, we can more effectively target our efforts and resources to where they will have the greatest impact in reducing new HIV infections, improving health outcomes for people living with HIV, and reducing HIV-related disparities. In addition, by making data more open, accessible, and available to HIV/AIDS service providers, program planners, policymakers, and others, we can enhance their ability to repurpose that information as needed to reduce HIV transmission and better support people living with HIV/AIDS in their communities.

How does AIDS.gov use open data?

At AIDS.gov, we use open data (service provider names, phone numbers, locations, etc.) to populate our HIV/AIDS Prevention and Care Services Locator. With this Locator, users can enter their ZIP codes and be linked to nearby HIV testing sites, housing providers, health centers, and other HIV/AIDS service providers. The Locator is an “application programming interface” (API), meaning that it uses open data that are available for others to access and repurpose to generate their own products. Government leaders like Chief Information Officer Steven VanRoekel have referred to APIs as the “secret sauce” behind the next wave of technical innovation.

Others have already used this data to build their own clinic location finders. For example, recently, a national organization dedicated to providing and promoting comprehensive sexual health education to young people incorporated open data on HIV testing centers and family planning clinics to provide a customized map of services to visitors. By doing so, the organization was able to use AIDS.gov’s open data to meet the needs of its target audiences.

Anyone is welcome to access and use this data to develop websites, apps, and databases to connect people to HIV prevention and treatment services. We are excited to make this important resource available to you and excited to see what you do with it!

More information

• Read the Executive Order (EO) on open data
• Read the new Open Data Policy [PDF 6MB]
• Watch a 2-minute video about the new EO and Policy

Editor’s Note: In the future, AIDS.gov will provide updates on an effort led by the Office of HIV/AIDS and Infectious Disease Policy (OHAIDP) to evaluate the feasibility of establishing a centralized, secure data reporting tool for HHS grantees providing HIV services, an undertaking consistent with the White House’s Open Data Policy and the HHS Open Data Plan. To gather ideas about this project, OHAIDP issued a Request for Information (RFI) on May 2, 2102, and work on the tool has been underway since September. Read about it in this blog post.

“Ahora el video de la Cascada de Tratamiento de VIH también está disponible en español”

Recently we shared an animated video about the HIV treatment cascade in the United States that has quickly become one of the most-watched videos ever on the AIDS.gov YouTube channel . We’re pleased to share the Spanish language version of this video that its producer, Gilead , has just released:

While anyone can become infected with HIV, some Americans are at greater risk than others including Latinos and Latinas, who accounted for 21% of all new HIV infections in 2010 while representing approximately 16% of the total U.S. population according to the CDC [PDF 321KB]. In fact, CDC estimates [PDF 359KB] that at some point in life, 1 in 36 Latino men will be diagnosed with HIV, as will 1 in 106 Latina women. As such, the National HIV/AIDS Strategy includes Latinos and Latinas among the populations it prioritizes for greater attention in HIV prevention, care, and treatment efforts.

HIV Treatment Cascade

The HIV treatment cascade – sometimes also called the HIV care continuum – is a model being used by federal, state and local agencies to identify issues and opportunities related to improving the delivery of services to persons living with HIV across the entire continuum of care—from diagnosis of HIV infection and active linkage to care to initiation of antiretroviral therapy (ART), retention in care, and eventually achieving viral suppression (meaning no detectable virus in the blood). The cascade illustrates the proportion of individuals living with HIV/AIDS engaged in each of those various steps in that continuum of care. Unfortunately, it shows that along each step of the continuum, a significant number of people living with HIV in the U.S. “fall off”. In fact, only a minority of persons with HIV achieve suppression of their viral infection, the ultimate goal of HIV treatment that primarily benefits individual health, but also has the important secondary benefit of reducing the likelihood of viral transmission. CDC estimates [PDF 672KB] that three out of four people living with HIV in the United States have not successfully made it through the entire HIV treatment cascade, achieving a suppressed viral load.

“Clearly, we have more work to do,” HHS Secretary Kathleen Sebelius recently remarked when discussing engagement in HIV care with domestic and global partners. “Identifying and reducing the obstacles along the path from diagnosis to viral suppression is one of the key goals of the President’s National HIV/AIDS Strategy.”

Indeed, we all must do better at engaging a higher percentage of people living with HIV along each stage of the care continuum in order to achieve better outcomes for all people living with HIV and reach all of the Strategy’s goals. Helping people living with HIV to navigate the treatment cascade is a shared responsibility of federal, state, and local governments; healthcare providers; community groups; faith communities; people living with HIV; and others.

These videos can be helpful tools in educating partners and allies about this important charge. Both videos provide a brief overview of HIV in the United States and illustrate how improvements along each step of the treatment cascade are vital to advancing us toward an AIDS-free generation.

Additional Spanish Language Resources

To support health departments, community organizations, healthcare providers, and other partners, AIDS.gov provides a quick reference directory to Spanish language HIV/AIDS resources available from agencies across the federal government on our Recursos en español page.

How could you use these videos or resources to strengthen your work in reaching Spanish-speaking individuals and/or focusing on how to improve the treatment cascade in your community? Tell us in the Comments section below.

Please note that featuring this video on blog.aids.gov does not constitute an endorsement by either AIDS.gov or the U.S. Department of Health and Human Services (HHS) of the private entity’s activities, products, or services.

Today marks one year since we released the Digital Government Strategy (PDF/ HTML5), as part of the President’s directive to build a 21st Century Government that delivers better services to the American people.

The Strategy is built on the proposition that all Americans should be able to access information from their Government anywhere, anytime, and on any device; that open government data – data that are publicly accessible in easy-to-use formats – can fuel innovation and economic growth; and that technology can make government more transparent, more efficient, and more effective.

A year later, there’s a lot to be proud of:

Information Centric
In twelve months, the Federal Government has significantly shifted how it thinks about digital information – treating data as a valuable national asset that should be open and available to the public, to entrepreneurs, and others, instead of keeping it trapped in government systems.  We jump-started this process by releasing hundreds of government datasets via machine-readable formats known as application programming interfaces (APIs). These APIs - which encompass datasets as varied as home and business energy trends  to real-time earthquake notifications around the world – can be used by private-sector developers to create new applications and services. You can even access the current weather on Mars, transmitted from the Curiosity Rover. To facilitate the creation of new and useful digital tools, each agency released its own developer pages, and Data.gov launched a government-wide API directory to make these resources easier to find and use. Additionally, Data.gov transitioned its central catalog to an open source platform, enabling automated aggregation of data directly from agencies’ websites to Data.gov. Finally, in a landmark action, the President recently released a historic Executive Order and Open Data Policy, making open and machine-readable the new default for government data.

Shared Platform
The Federal Government and the American people cannot afford to have each agency build isolated and duplicative technology solutions. Instead, we must use modern platforms for digital services that can be shared across agencies. To maximize the value of our investments in technology, we launched a Digital Services Innovation Center that launched Sites.USA.gov to help agencies build plug-and-play websites and created the Mobile Application Development Program to help agencies plan, test, develop and launch mobile apps. Additionally, the Administration is participating in open source communities , using crowdsourcing, and launching government-wide solutions to increase efficiencies. To leverage the government’s buying power, we established a government-wide mobile and wireless contract vehicle that acts as a “family plan” for the Federal Government, which we anticipate will save taxpayers $300 million over the next five years. Through this vehicle and the new Managed Mobility Program at GSA, agencies can better centralize management of devices and strengthen security of the government’s mobile platforms.

Customer-Centric
Citizens shouldn’t have to struggle to access the information they need. To ensure that the American people can easily find government services, we implemented a government-wide Digital Analytics Program across all Federal websites. That means for the first time, we have insight about what information the public is looking for, where they’re looking for it, and if they’re able to find it – essential to our goal of easing access to government information. We are also optimizing Federal websites for mobile devices and creating mobile apps to ensure government services are available to citizens anywhere, anytime and on any device. For example, the new USAJobs app from the Office of Personnel Management makes it easier for job seekers to search and apply for jobs with their mobile devices, and the SaferBus app  from the Department of Transportation allows users to access a bus company’s safety performance record and file a complaint from their mobile devices. These are just two of the many mobile products we’ve released as part of the Digital Government Strategy.

Security and Privacy
Throughout all of these efforts, maintaining cyber security and protecting privacy have been paramount. Because mobile devices and wireless networks have unique security challenges, we published the first government-wide mobile and wireless security baseline, to help agencies identify appropriate security solutions and share them across the Federal Government.

In the end, the digital strategy is all about connecting people to government resources in useful ways. And by “connecting” we mean a two-way street. We are counting on the public – developers, entrepreneurs and innovators – to join us, and be a part of the process. Together, we will continue to modernize government to respond to 21st Century opportunities.

Learn more at: http://www.whitehouse.gov/digitalgov/strategy-milestones and http://www.whitehouse.gov/digitalgov/deliverables.

Last week, U.S. Health and Human Services Secretary Kathleen Sebelius announced a nearly $1 billion initiative that will fund grant awards and evaluation to build on the Obama administration’s work to transform the health care system by delivering better care and lowering costs for taxpayers and patients. The Health Care Innovation Awards are funded by the Affordable Care Act and will be administered by the Centers for Medicare & Medicaid Services (CMS). Activities supported under this funding opportunity announcement (FOA) are intended to test new payment and service delivery models that will ensure better care and lower cost for Medicare, Medicaid, and Children’s Health Insurance Program (CHIP) enrollees.

CMS is seeking new models in four categories – all areas that have a high likelihood of driving health care system transformation and delivering better outcomes for Medicare, Medicaid, and CHIP beneficiaries. One category is “models that improve care for populations with specialized needs.” The FOA specifically identifies persons living with HIV/AIDS (PLWHA) as among the priority populations in this category, in particular spotlighting efforts to link and retain PLWHA in care and improve medication adherence that leads to viral suppression (adolescents in crisis, persons requiring long-term support and services, and persons with serious behavioral health needs are others included among the priority populations under this category).

“These awards will continue our work to drive down health care costs while providing high quality care to all Americans, and I’m excited to see the innovative ideas these applicants will bring to the table,” Secretary Sebelius said. “Organizations from the public and private sectors throughout the country are finding creative solutions to our health care system challenges and these awards will continue to stimulate these ideas.”

Please read the fact sheet and FOA, available at the Health Care Innovation Awards initiative website at http://innovation.cms.gov/initiatives/Health-Care-Innovation-Awards/Round-2.

The Food and Drug Administration (FDA) wants to talk to people living with HIV (PLWH) and HIV/AIDS advocates. On June 14, under its Patient-Focused Drug Development initiative, FDA will ask PLWH to join an open public discussion about:

• the impact of HIV on your daily life,
• experience with currently available therapies to treat HIV,
• your views on issues related to HIV cure research, including perceived benefits and acceptable risk for participating in HIV cure research, and
• how best to ensure clear communication of potential benefits and possible risks through informed consent.

This discussion is intended to help improve drug development and treatment, and get patients’ perspective into HIV cure research. The meeting takes place on June 14, 2013, from 9:30 AM – 5:30 PM at FDA’s White Oak Campus, located at:

10903 New Hampshire Avenue

Building 31, (in The Great Room)

Silver Spring, Maryland 20993

There is no cost to attend, but if you would like to attend, please register by June 5. Those who cannot attend will be able to view the meeting via webcast. However, the webcast will not be interactive, so viewers will not be able to actively participate in the discussion.

FDA has prepared a list of questions that we hope will frame and guide the discussion at this meeting. You can review those questions, read more about the meeting, and register at this link.

The implementation of scientifically proven HIV prevention strategies is helping to reduce the number of new infections — the annual HIV infection rate globally fell by 22 percent from 2001 to 2011 — but a great deal more must be done. Significant scale-up of proven HIV prevention strategies coupled with the discovery of new HIV treatment and prevention interventions are needed to achieve an end to the global HIV/AIDS pandemic. A safe, effective and durable HIV vaccine is an essential cornerstone to the long-term strategy to achieve this goal.

Developing a safe and effective HIV vaccine has been a long and difficult process largely because HIV has proven to be an especially tough target. Recent developments with the HVTN 505 clinical trial and analyses from the HVTN 503 “Phambili” vaccine study have been disappointing, but they also provided clear answers about investigational vaccine strategies that, ultimately, were not effective. Still, the new directions for HIV vaccines that have been recently initiated define our future path and will be pursued.

Among many projects, scientists continue to explore findings from the RV 144 HIV vaccine study in Thailand, which, in 2009, provided proof-of-concept that an HIV vaccine can afford a modest level of protection. Ongoing research related to the Thai trial is providing important information about human immune responses and other factors that may explain why the investigational vaccine protected some trial volunteers from HIV infection but not others. Such data will help advance researchers’ understanding of HIV’s structure and vulnerabilities and help guide the development of future HIV vaccine candidates. Large-scale investigational vaccine clinical trials designed to build on the RV 144 results and create a more robust and durable level of protection are expected to begin in two-to-three years in South Africa.

In basic research, scientists are making important discoveries about broadly neutralizing antibodies capable of disabling a wide range of HIV strains when tested in the laboratory setting. For example, NIAID scientists recently charted the co-evolution of HIV and a strong antibody response in an HIV-infected study participant, who is one of the 20 percent of HIV-infected individuals who naturally develops broadly neutralizing antibodies to the virus after several years of infection. Their findings could help identify which proteins to use in an investigational vaccine to induce broadly neutralizing antibodies more quickly. In another advance, a team of NIH scientists recently developed a new tool to identify broadly neutralizing antibodies from blood samples, which could help speed HIV vaccine research.

Other interesting basic research findings have included the identification of a new HIV-suppressing protein, called CXCL4, in the blood of HIV-infected individuals. NIAID scientists found that CXCL4 binds to HIV in such a way that the virus cannot attach or enter a human cell, leading to the conclusion that it may serve to regulate viral replication in an infected individual and, therefore, control the pace at which HIV disease progresses. Additionally, NIAID researchers found that even though HIV diversifies widely in infected individuals over time, the virus strains that are passed on through heterosexual transmission often resemble the strain that originally infected the transmitting partner. Learning more about the characteristics of these dominant strains could help inform HIV vaccine design.

Recent NIAID investments in basic research toward innovative HIV vaccine discovery research and vaccine immunology and immunogen discovery should also prove fruitful in the coming years for HIV vaccine research.

On this HIV Vaccine Awareness Day, NIAID thanks the thousands of men and women who have selflessly volunteered for clinical studies and the scientists and clinicians working to find an effective HIV vaccine. NIAID shares your commitment and will continue the important research needed to make a protective HIV vaccine a reality.

Editor’s note: Please see our National HIV Vaccine Awareness Day video with Dr. Carl Dieffenbach from NIAID, NIH.

Dr. Howard Koh

As we celebrate Asian Americans and Pacific Islanders (AAPI) Heritage Month and the many accomplishments of AAPIs, we also want to recognize that these communities still face many barriers to health and health care, including HIV/AIDS. To recognize these challenges, May 19^th has been designated as the National Asian & Pacific Islander HIV/AIDS Awareness Day. The theme for this year’s observance is: “Saving face can’t make you safe. Talk about HIV—for me, for you, for everyone.”

According to the Banyan Tree Project which founded the observance:

“Saving face” is a common cultural concept in A&PI communities, where individuals seek to protect the family from perceived public shame or disgrace. In practice, “saving face” contributes to silence about sex, HIV, and safe sex practices. Saving face and stigma also lead to higher rates of HIV infection and a lack of knowledge about one’s HIV status.

In addition to cultural challenges, many AAPIs in the United States experience economic and language barriers that contribute to discrimination and make HIV prevention, care, and treatment efforts even more challenging.

We are working to address some of the factors that contribute to a culture of silence and to health disparities in AAPI communities. And we are using new tools and technologies to help reach those at greatest risk for, or living with, HIV/AIDS.

The U.S. Department of Health and Human Services continues to look for ways to bridge the difficulties that some AAPI individuals and communities have in accessing medical care. To that end, we recently issued enhanced National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (CLAS Standards), which guide health professionals and organizations in delivering culturally respectful and linguistically responsive care.

The enhanced CLAS Standards recognize that health is influenced by many factors, and the standards now include race, ethnicity, language, spirituality, sexual orientation, and gender identity, among others, in the definition of “culture.” Culturally and linguistically competent health care providers can play a major role in helping AAPIs (and other racial/ethnic minorities) to understand the impact of HIV in their communities and to take appropriate actions to protect themselves and their partners from HIV infection.

One of the first steps is to take an HIV test. You can find HIV testing services near you by using the AIDS.gov HIV Testing and Care Services Locator.

Another step is to receive treatment for HIV disease, because people who are taking HIV medications are much less likely to pass the virus on to their partners. Known as “treatment as prevention,” it is a key element in stopping the spread of HIV. To ensure that treatment is available to everyone who needs it, we are also working to expand healthcare availability and options to AAPI populations. The Affordable Care Act [PDF] will help to get people at risk for, or living with, HIV/AIDS the preventive services and treatment they need and reduce health disparities in AAPI communities.

For example, the Affordable Care Act has expanded coverage of free preventive care (including HIV screening and STD prevention counseling for adults at higher risk) to an estimated 3.8 million AAPIs with private insurance. These services will help those who are living with HIV (or an STD that can increase their risk for getting HIV) but don’t know it yet to learn their status and receive treatment if appropriate. And because of the health care law, millions of Americans will have the opportunity to get affordable, quality health coverage—including people living with HIV/AIDS, who have traditionally had great difficulty in obtaining health insurance.

Beginning October 1, 2013, Americans will be able to shop for coverage that best fits their needs and budget in the new Health Insurance Marketplace. Coverage will begin as early as January 1, 2014. Sign up now for information at https://signup.healthcare.gov.

Finally, the Department continues to broaden the use of technology and social media to reach populations at greatest risk for HIV. Studies show that English-speaking AAPIs have the highest rate of cell phone usage of any racial/ethnic group, and they are more likely to have wireless access than other groups. Under the guidance of the Digital Government Strategy, we are making it easier for everyone to find information on HIV prevention, testing, and treatment when they want it and on any device they choose. Given AAPI communities’ heavy use of mobile technologies, these efforts will provide particular benefits.

As we celebrate the diversity and contributions of AAPIs this month, I encourage you to talk to your family members, friends, and colleagues about HIV and to share information with them about available resources. A great conversation-starter is the Banyan Tree Project’s Taking Root: Our Stories, Our Community” video series, which chronicles the experiences of AAPI people who are living with HIV.

May 18th is HIV Vaccine Awareness Day (HVAD), led by the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health. We spoke to Dr. Carl Dieffenbach at NIH, who had this to say about HIV Vaccine Awareness Day:

“[On Vaccine Awareness Day] we can take a moment to acknowledge the study participants who have given their time, their energy, . . .  to the study of HIV vaccines.”

Watch the HIV Vaccine Awareness Day video to hear the rest of his comments and visit the HIV Vaccine Awareness Day website for resources to help community members support the day. To learn more about HIV/AIDS and the Federal response, including information on federally funded research, visit AIDS.gov.

Dr. Ronald Valdiserri

This week, we mark the second annual observance of Hepatitis Testing Day. Establishment of this national health awareness day on May 19 was called for in the Action Plan for the Prevention, Care and Treatment of Viral Hepatitis as part of efforts to decrease health disparities by raising greater public and health care provider awareness, particularly among those populations most affected by hepatitis B and C infections. To achieve the goals of the Action Plan, we must address the fact that millions of Americans have chronic hepatitis, but most of them do not know they are infected.

Unfortunately, too many Americans at risk for or living with hepatitis B or hepatitis C infections remain uninformed about various facets of viral hepatitis, including the need for testing and care, associated adverse health effects, and the availability of treatment. By raising the profile of these infections and the importance of testing, we hope to generate greater awareness and encourage more people to learn about their risk and discuss hepatitis testing with their health care providers.

As we approach Hepatitis Testing Day, I encourage you to learn more using the following resources:

•  Hepatitis Risk Assessment: Find out if you should be tested by taking a 5-minute online Hepatitis Risk Assessment. This CDC tool allows individuals to determine their risk for hepatitis B and hepatitis C by answering questions privately, either in their home or a health care setting. They can then print tailored recommendations based on CDC’s testing and vaccination guidelines for viral hepatitis to discuss with their doctor. Try the Hepatitis Risk Assessment out for yourself! We hope you’ll help us spread the word about the tool by sending out an online health e-card to your friends, colleagues and/or patients and by downloading free Hepatitis Risk Assessment web buttons and badges to feature on your website.

• Hepatitis Testing Day Event Page: Check out the Hepatitis Testing Day Event Page to find testing events taking place across the country throughout the month of May. If you are hosting an event, you can add it to the listing.

• Baby Boomers at Higher Risk:  According to the CDC, about 3 million adults in the U.S. are infected with the hepatitis C virus, and most of them are baby boomers. That’s why CDC recommends that all Americans born from 1945-1965 (the generation known as “baby boomers”) get tested for hepatitis C. People in this age group are five times more likely to have hepatitis C.   Watch this brief new video to learn more about why hepatitis C testing is important.
  

• Hepatitis B Awareness for Asian Americans: Assistant Secretary for Health Dr. Howard Koh encourages Asian Americans to get tested for chronic hepatitis B in a free, downloadable poster that you can post and share with others. CDC also recently updated its page on Asian Americans and Hepatitis B.

Finally, in an important issue of CDC’s Vital Signs last week, we were reminded of the importance of confirmatory testing in the diagnosis of HCV infection. The issue discusses HCV testing among baby boomers and includes new findings from a CDC study indicating that only half of Americans with hepatitis C receive complete testing for the virus. A simple blood test, called a hepatitis C antibody test, can tell if you have been exposed to the hepatitis C virus, but cannot tell whether you are still infected. Only a different follow-up blood test – an RNA test – can determine if you are still infected. The data, based on reports sent to health departments in eight cities, show that only half of people with a positive hepatitis C antibody test had the follow-up test reported (diseases of public health significance, such as hepatitis C, are usually reported to local health departments when they are diagnosed to help identify disease trends and track outbreaks). The other half did not have a follow-up test reported (although some of them may have been tested but no report was done). Without the follow-up test, a person will not know if they still have hepatitis C and cannot get the medical care they need. As CDC notes, these findings suggest that HCV testing and reporting must improve if we are to meet the goal of the Action Plan to increase the proportion of persons who are aware of their infection.

We are pleased that many of the federal partners working to implement the Action Plan are joining in the observance of Hepatitis Testing Day, raising awareness of the observance among their staff, grantees, providers, and other stakeholders. We urge you to join us, too, by learning more and sharing what you learn with others.  Together we can make this second annual Hepatitis Testing Day a great success by raising awareness of viral hepatitis and encouraging complete testing for those who may be chronically infected.

The Banyan Tree Project launched Taking Root: Our Stories, Our Community last year for May 19, the National Asian & Pacific Islander (A&PI) HIV/AIDS Awareness Day. Taking Root puts the power to end HIV stigma back in the hands of the community through a community-driven, community-owned digital storytelling initiative. Since then, we have held four workshops in California, Hawai’i, and Guam, where A&PIs living with or affected by HIV produced their own true, authentic, and unfiltered stories about their lived experiences with HIV and stigma. By the end of 2013, we will have completed three more workshops in San Francisco, San Diego and Cincinnati, OH.

Asians & Pacific Islanders comprise over 50 different ethnic groups speaking over 100 different languages. We have always encountered challenges in trying to create a single, powerful message for such a highly diverse population. Taking Root solves this problem by including first-person experiences from many different people and perspectives. Together, the stories form a larger, more cohesive meta-story of HIV in the A&PI community. While all the stories may not resonate with every viewer, every individual will be able to find a story that speaks to them on a personal level. For instance, Jaimie , a mother living with HIV in Hawai’i, shares the ways her sons help her live a fuller, healthier life. Martin , on the other hand, is a gay man from Guam who tested late and is trying to find his way through shame and secrecy to openness and light. All the stories showcase the courageous spirit and resilience of the storytellers. Watch Martin’s story:

Equally important is how we get these stories to the community. Social media is a key channel in our distribution strategy (along with community events and in-person screenings), especially since the stories offer engaging, thoughtful content viewers will want to watch and share with their networks. The completed stories can be seen on our YouTube channel and are available to the community to embed on their websites or share over their social networks. We also post the videos through our own Facebook and Twitter pages. We use the hashtag #withoutshame to generate healthy, compassionate conversations about the videos and HIV on Twitter. During World AIDS Day in 2012, we held two Twitter Chats to premiere 10 videos produced in the fall of 2012. We have found that Twitter is a great tool to connect with organizations to share resources like the Taking Root videos for their own work with A&PIs.

While our Facebook page lights up during May, we make sure to highlight videos throughout the year to keep our fans active and engaged—after all, HIV doesn’t go away after the awareness day is over. Because the Taking Root stories cover a variety of issues, we also post videos on Facebook tying to other awareness days. For example, we posted a story about Hatsume , a young woman living with HIV on National Women & Girls HIV/AIDS Awareness Day.

While we have found success using social media to build HIV awareness, some challenges remain. Because social media is “social,” community members may be reluctant to share information about HIV with their personal networks. We can’t rely on passive posting patterns to draw viewers; we need to build interesting online events and activities into our engagement strategies to expand our viewing audience and social network.

One tactic we’re using is the live Twitter chat, hosted in partnership with other community-based organizations aligned with our vision. For the 9th observance of National A&PI HIV/AIDS Awareness Day, we partnered with five organizations across North America and the Pacific to hold the #BTPchat series on Twitter , premiering new Taking Root videos. The goal is not just to show the stories, but also to facilitate and model healthy discussions about sex and HIV in online spaces. If you want to tweet about HIV #withoutshame, follow @BTPMay19 and join our discussion. The chat series started on May 9 and will continue every Thursday through June 6 at 5pm Eastern Time. Topics range from “Living with HIV” to “Youth and HIV.” See the full schedule on our website.

This May 19th, we encourage you to check out and share any (and all!) of the Taking Root videos that resonate with you or your organization. Remember: Saving face can’t make you safe. Talk about HIV—for me, for you, for everyone.