It was very exciting to see the presence of a number of social media and mobile sessions at the XIX International Conference on AIDS (AIDS 2012 ) last week in Washington, DC. Patricia Mechael (@PattyMechael), one of the presenters at those sessions, noted that HIV/AIDS was one of the first areas to leverage mobile technology in the global health space; thus it is our duty to continue this and to influence others. In the session, Utilization of Social Media and Web 2.0 to Advance the Human Rights of Young People and Adolescents , Hugh Stephens (@hughstephens) reminded us that it is critical to keep abreast of emerging technologies as avenues for helping us reach our goal of an AIDS-free generation.

Crowd Out AIDS

Social and Crowd Sourced
There were many sessions that highlighted how social media and/or mobile technologies are instrumental in the response to HIV/AIDS in different settings. During the session Strengthening the Global HIV Response Through Social Media , Aram Barra (@arambarra) from Mexico talked about Crowd Out AIDS (@CrowdOutAIDS), an online social collaboration platform developed with UNAIDS that maximizes the potential for young people’s participation and leadership in the AIDS response and serves as the hub for all UNAIDS youth-related activities.The platform takes advantage of crowd sourcing which gathers information from the general public about current events, products and retail establishments. For example, if a natural disaster strikes an area, locals often capture and upload images before a professional news crew arrives. Crowd Out AIDS features include CrowdMap , a global geo-location database of youth activists and organizations, as well as a forum, a blog and a wiki all built around engaging youth. It was refreshing to see a collaborative platform designed specifically for young HIV/AIDS leaders.

An example demonstrating the use of crowd sourcing is Declaration for Change (#dec4change). Young people from around the world used a Codigital platform to develop a list of priorities and a declaration for change for the AIDS response aimed at achieving an AIDS-free generation. Youth contributed new ideas, proposed edits or revisions to each other’s suggestions, and voted on ideas of how young people will achieve an AIDS-free generation.

Text to Change

Easy Global Usage with Big Impact
“Simple in concept, powerful in results” is the description given by Uganda’s Eunice Gnay Namirembe, Program Manager of Text to Change (TTC), an easily scalable platform used to send out and receive text messages, multimedia messages, voice, and data to educate, engage, and empower people on health and well-being. Using mobile phones on a large scale for social purposes, TTC has been used to provide HIV-related information, such as personalized adherence reminders to improve treatment outcomes and interactive quizzes. The tool can also be used for data collection surveys. By focusing on the end-user through provision of local content and software, TTC has had great success. Ms. Namirembe also observed that despite the growing number of smartphones in the world, people in rural areas in developing countries can best be reached by text messaging, which is (and may remain for awhile) the most widely-used data application in the world. So, finding effective methods of working toward important health goals through mobile devices makes the most sense.

Innovative Approaches
Among the innovations I saw featured was the mobile microscope, which could soon be used to improve HIV care delivery in the developing world. Dr. Aydogan Ozcan, a recipient of the NIH Director’s New Innovator Award and head of UCLA’s Ozcan Research Group , demonstrated LUCAS, an attachment for mobile phones that acts as a microscope, except without lenses. Using hardware that costs less than $10, these mobile microscopes are able to use the shadows of cells to detect illnesses. For the HIV community, Dr. Ozcan talked about their work on a mobile phone attachment that could be used for CD4 counting, logging the results in a database, and texting the results at a minimal cost. This could dramatically improve the availability of CD4 counts and other lab work in the developing world where access to labs and timely results can be a challenge, particularly in rural areas. It could also be used for digital diagnosis and rapid testing of Malaria and other diseases. Different versions of Ozcan’s mobile phone attachments could help diagnose patients and provide better opportunities for care.

HHS Secretary Kathleen Sebelius also announced during an AIDS 2012 plenary session that HHS is working in partnership with the MAC AIDS Fund to pilot UCARE4LIFE. The pilot will use mobile phone texting to provide important tips and reminders about disease management to people living with HIV.

There were many other presentations about new media and mobile technology during the conference. The take-away here is that as we continue toward our goal of an AIDS-free generation, we need to remember to leverage all that the digital world now offers to help us efficiently and effectively act.

Editor’s Note: We had opportunities to catch up with so many great partners on so many important issues while at the XIX International Conference on AIDS (AIDS 2012) last week, we’ll continue bringing you interviews this week and next.

In this conversation from AIDS 2012, Dr. Ron Valdiserri, Deputy Assistant Secretary for Health, Infectious Diseases and Director of the Office of HIV/AIDS and Infectious Disease Policy at the U.S. Department of Health and Human Services, speaks with Mr. Terrance Moore, Director of Policy and Health Equity at the National Alliance of State and Territorial AIDS Directors (NASTAD ). They discussed the disproportionate impact of HIV/AIDS among African American gay, bisexual, and other men who have sex with men and efforts underway at the national and state levels to address this disparity. They touch on efforts to increase HIV testing among this population, including CDC’s new Testing Makes Us Stronger campaign which Mr. Moore advised on, the importance of improving linkage to and retention in care among this population, and the domestic and global struggles to address and reduce stigma which undercuts these efforts.

Watch their brief conversation below. Then, in the Comments section below, share your ideas for improving HIV prevention, care and treatment for Black gay, bisexual, and other men who have sex with men.

You can also read more on this important topic in our post AIDS 2012: HIV in Gay and Bisexual Men.

Stay tuned for more posts featuring conversations from AIDS 2012 later this week and next.

Today is the last day of AIDS 2012, the first International AIDS Conference to be held in the United States in more than 20 years. AIDS 2012 helped crystallize the extraordinary opportunities—and serious challenges—that lie ahead as we work to bring about an AIDS-free America.

Since the last International AIDS Conference was held in the United States in 1990, we have seen great strides in fighting HIV in this country: The number of annual new infections decreased 43% from 84,200 to about 48,000.

• New AIDS diagnoses among people who inject drugs decreased 77%, and estimated perinatal HIV diagnoses by 91%.
• Prevention efforts averted more than $125 billion in health care costs.

But there is still a long road ahead. Too many Americans are being infected with and dying from HIV every day. One in five Americans living with HIV does not know she or he has the virus, and only a third are receiving effective treatment that can protect their health and reduce the risk of transmission to others. Stark inequities continue to define the U.S. epidemic.

AIDS 2012 has reaffirmed my belief that we can overcome these challenges and reach the end of this road—the end of AIDS in America. As many speakers at the conference have pointed out, we are better equipped to fight HIV/AIDS now than ever before. Recent scientific advances have expanded the prevention toolkit to include not only behavioral interventions, but also antiretroviral therapy and tools that improve outcomes along the continuum of care. Across the country, health departments and community organizations are updating their prevention strategies to take advantage of the latest knowledge.

At CDC, we are implementing a High-Impact Prevention approach that directs the most cost-effective, scalable interventions, to the right populations and aligns those resources with the geographic burden of the epidemic. High-Impact Prevention will help us better address the goals of the National HIV/AIDS Strategy. For example, the Expanded Testing Initiative (ETI) supports HIV testing and linkage programs that reach African Americans, Latinos, men who have sex with men, and injection drug users. In its first three years, ETI diagnosed 18,000 individuals who were previously unaware that they were HIV positive, saving almost $2 in medical costs for every dollar invested.

And we continue to invest in HIV surveillance that provides essential information to guide the national and local response. At AIDS 2012, we presented the first-ever detailed breakdown of the continuum of care, showing how access to care and effective treatment varies by race/ethnicity, risk group, gender, and age. These data will help health departments and community organizations work together to strengthen care and realize the full potential of treatment as prevention.

I am leaving AIDS 2012 convinced that it is possible we can end AIDS in America. Among the thousands of U.S. advocates, scientists, community workers, and policy makers here at the conference, I see a shared sense of urgency, and a growing understanding that we must act quickly to turn the tide of HIV in the United States. Now it’s time to harness that enthusiasm and turn it into action on the ground.

The road ahead is long, but we are well on our way.

Resources

• CDC HIV/AIDS Website
• CDC HIV/AIDS Twitter Feed
• High-Impact Prevention Website
• Public Health and HIV Prevention Efforts Video featuring CDC’s Division of HIV/AIDS Prevention Director Dr. Jonathan Mermin
• “Let’s Stop HIV Together” Website

Dr. Ron Valdiserri and Dawn Averitt Bridge

At the XIX International Conference on AIDS (AIDS 2012)  on Tuesday July 24, 2012, Dr. Ron Valdiserri, Deputy Assistant Secretary for Health, Infectious Diseases, caught up with Ms. Dawn Averitt Bridge, Founder and Chair of The Well Project . They discussed National HIV Awareness Month  (NHAM) and the importance of expanding and sustaining the American public’s concern about HIV/AIDS. Dawn highlights several new efforts as a result of NHAM, including support from two Major League Baseball teams.  Watch  their brief conversation below. Then, share your ideas for engaging partners from other sectors in the comments section below.

L-R: Miguel Gomez, Michelle Samplin-Salgado, Todd Park, Deron Perkins, Venton Jones, Ken Williams, Eunice Gnay Namirembe, Oriol Gutierrez, Ingrid Floyd, Susannah Fox

On Monday, July 23, AIDS.gov hosted a satellite session at AIDS 2012 on the State of New Media and HIV. During the session we heard how new media is changing the response to HIV, allowing individuals and programs to engage others and create conversations and dialogues to further HIV prevention and treatment goals. At the end of the session, with almost 200 delegates in the room and nearly 500 people watching on Facebook and Livestream (watch a recording of the session ), participants recited the following declaration:

“We call upon the HIV community to declare that new media and emerging technologies are critical in helping us connect, create, listen, learn, and engage as we move towards and AIDS-free generation.”

Todd Park , Chief Technology Officer for the White House, kicked off the session by describing how, two months ago, President Obama released the U.S. Digital Government Strategy. He noted that exactly two years and ten days ago the President also released the U.S. National HIV/AIDS Strategy. In his remarks, Mr. Park said, “I’m convinced these two Strategies have a synergy that really can make a difference in people’s lives. They are roadmaps to ensure positive response to the needs of all Americans, and we hope a useful tool to our colleagues outside the U.S.”

In the introduction to the new Digital Government Strategy, President Obama states, “I want us to ask ourselves every day, how are we using technology to make a real difference in people’s lives?” Todd added, “That’s why we’re here. To make a difference in people’s lives…to make a difference as we move towards an AIDS-free generation.”

Panelists each shared how they are using new media to strengthen their respective actions on HIV/AIDS.

It’s never too late to learn
Susannah Fox of the Pew Internet & American Life Project  cited statistics that 1 in 4 people living with a chronic health condition connect with peers via social networks. She highlighted how engagement leads to better health outcomes. New media can be that platform. Susannah shared the story of her bright and curious grandmother, who when seeing the internet for the first time towards the end of her life, responded with discouragement, “I was born too late.” In fact, she quickly learned that she could connect with others, and even into her mid-90’s, participated in online communities. Susannah said, “we all have something to learn and we all have something to teach.”

Eunice Namirembe from Uganda, who manages the initiative Text to Change , talked about the simplicity and power of mobile text messaging to drive people to get tested and change their behavior. In Uganda, 15,000 text messages encouraging HIV testing yielded a 20% response rate. As those who responded to the text waited in line to be tested, a community was built; an overwhelming response to a simple text message.

Why it’s important to listen
Ingrid Floyd of Iris House spoke about using social media to listen and using platforms such as Facebook and Twitter to interject messages related to HIV prevention into online interactions. She emphasized the importance of listening before engaging and of using events and pop culture references to inspire conversations about safer sex and HIV prevention.

Connect and engage
Venton Jones of the National Black Gay Men’s Advocacy Coalition described his experience growing up as a child of the digital generation. He noted how each step in his life has been marked by a change in technology, and described the importance of  disclose his own HIV status. By sharing his status online, Venton helps gives a face to HIV/AIDS, creating a space for broader conversations about stigma and disclosure. Following Venton’s presentation, an audience member shared his own story about disclosing his HIV status on Facebook. It was a testimony to the power of new media to connect people.

Oriol Gutierrez of POZ has lived as a digital pioneer, using new media and building a collection of best practices around video, blogging, and social media. “New media allows me to share my story,” Oriol said. Consistency builds community, he said, regardless of how you share your message. Each platform requires a specific skill set and approach, but consistency over time is a key discipline.

The power of video and the spoken word
The session began and ended with creative expressions using new media to educate and inform. Deron Perkins of Real Talk DC , a project of Metro Teen AIDS , set the tone of the session with an eloquent and energetic spoken word in which he referred to AIDS as the “DC Viper”, striking far too many people living in Washington, DC. Deron uses social media as a platform to engage with DC youth, thereby raising awareness of HIV risk in the city.

Ken Williams of the Test Positive Awareness Network and Ken like Barbie created a video for the satellite, which described how he has used new media (specifically YouTube) to share his story of living with HIV.

AIDS.gov Director Miguel Gomez closed the meeting by highlighting the increased use of new media by the HIV community. He highlighted the importance of educating our colleagues about the power of new media as we move towards and AIDS-free generation. Miguel ended by saying, “We have the tools, we have the stories, and we are building the evidence to create that change.”

AIDS.gov would like to thank the Satellite Session Planning Committee for their time in helping us plan The State of New Media and HIV: Krisha Stone at Gay Men’s Health Crisis , Deb Levine and Bhupendra Sheoran at ISIS , Raul Posas at Metro TeenAIDS , Oriol Guitierrez at POZ , James Loduca from the San Francisco AIDS Foundation , and the National Minority AIDS Council .

How are you using new media to connect, create, engage, listen, and learn?

Dr. Howard Koh

During today’s AIDS 2012 plenary session, Assistant Secretary for Health Howard Koh, MD, MPH, discussed development and implementation of the United States’ first-ever comprehensive National HIV/AIDS Strategy. Dr. Koh provided an overview of the Strategy’s three goals and shared brief examples of how the U.S. is working to achieve them. “As we build on the foundation we’ve established, we continue to benefit from the experience and expertise of our many domestic and global partners,” said Koh immediately after his speech.  “My hope is that, together, we can seize this moment and channel this momentum toward the vision of an AIDS-free generation,” he added.

Read his remarks [PDF] or view the video from the session provided by the Kaiser Family Foundation.

XIX International AIDS Conference (AIDS 2012) Washington D.C. Plenary Session Secretary of State Hillary Rodham Clinton © IAS/Ryan Rayburn - Commercialimage.net

During today’s AIDS 2012 plenary session, U.S. Secretary of State Hillary Rodham Clinton spoke about progress and next steps toward achieving an AIDS-free generation. During her remarks she echoed the call she first made on World AIDS Day 2011 for the world to join the United States in working to achieve the goal of an AIDS-free generation. She also shared progress being made toward that goal, discussed several barriers to overcome, and announced investments totaling $157 million in four initiatives that will help advance us toward that goal.

The Secretary also called upon U.S. Global AIDS Coordinator Dr. Eric Goosby to take the lead on developing a blueprint by World AIDS Day 2012 that outlines the goals and objectives for the next phase of our effort to achieve an AIDS-free generation.  She also emphasized that other countries needed to step up to the plate and do their part, in particular by supporting the Global Fund to Fight AIDS, TB, and Malaria.

Kathleen Sebelius, Health and Human Services Secretary © IAS/Ryan Rayburn

Tonight in Washington, DC, Health and Human Services Secretary Kathleen Sebelius addressed the opening session of the XIX International AIDS Conference (AIDS 2012).

“This week is a chance for each of us to arm ourselves with the latest science, to trade best practices, to learn from each other, and then go back to our communities and countries with renewed energy and determination to finish the job,” she said. “On behalf of the United States, we are proud to be your hosts for the 19th International AIDS Conference.  And we are honored to be your partners in this important work.”

During her remarks, Secretary Sebelius announced a series of innovative public-private partnerships in the fight against the HIV/AIDS epidemic. Read her speech (PDF 62KB) and read more about the new partnerships (PDF 176KB).

Dr. Kevin Fenton

The doors to Washington, D.C. open to the world today with the official start of the XIX International AIDS Conference. For the first time in 22 years, the United States welcomes the world’s largest gathering of professionals working in the field of HIV. This affords us the opportunity to rapidly learn about new developments to increase our effectiveness in our work. Attendees will benefit from the science presented, the partnerships solidified, and the new conversations started that often lead to tomorrow’s next developments.

HIV programmatic advances, such as recent biomedical findings on the effectiveness of HIV treatment as prevention, are changing the way we care for those with HIV and how we prevent further spread of the disease. We look forward to hearing perspectives from our NIH colleagues on investments and progress in AIDS research. Last week’s approval by the U.S. Food and Drug Administration of medicine for pre-exposure prophylaxis (a combination of 300 milligrams of tenofovir and 200 milligrams of emtricitabine) offers us a new HIV prevention method, albeit approved to reduce the risk of HIV infection in uninfected individuals who are at high risk of HIV infection and who may engage in sexual activity with HIV-infected partners. In addition, testing advances are helping reduce the window period when HIV is detectable, and expanded testing programs bring those advances to more people on the ground.

All of us working in the field have great hope built on recent progress in science, program, policy and international collaboration. Progress that the conference will bring into focus. We are now talking about the beginning of the end of AIDS—something unimaginable just a few years ago. It will be a privilege to hear presentations from our colleagues from all parts of the globe on their innovative efforts. Attendees will want to be sure to attend one or more of the fascinating sessions focusing on work within specific regions of the world, for example, the Caribbean , Eastern Europe and Central Asia ,Latin America, a session on USA and Canada, and many more.

In the U.S., the National HIV/AIDS Strategy (NHAS) in combination with the goal of an AIDS-Free Generation—are making a significant impact. NHAS has provided governments, organizations and communities with a road map to slow the spread of HIV. A key CDC approach in implementing the U.S.’s national strategy is High-Impact Prevention, which prioritizes proven interventions with the greatest potential to prevent new HIV infections. At the conference, we look forward to a discussion of high level leadership in the U.S. on Wednesday, from 1:00-2:00pm, with CDC Director Dr. Tom Frieden and CDC’s Center for Global Health Director Dr. Kevin DeCock.

In closing, we want to thank the conference coordinating committee of the XIX International AIDS Conference for all their hard work in bringing us together. Our collective efforts to continue to raise awareness, fight stigma, find ways to increase health equity, and work toward solutions to obstacles in our prevention efforts are critical. What we accomplish in communities in every corner of the world helps us all move toward a healthier world and collective vision of an AIDS-Free Generation. Once again, it is our pleasure to welcome the top professionals in the field of HIV/AIDS to this important conference.

Note: CDC’s AIDS 2012 website provides more information on the agency’s presentations, activities and the special “Meet the CDC” leaders and experts at the CDC exhibit.

As the two people who worked as physicians in the early years of the HIV/AIDS epidemic before the miracle of antiretroviral drug (ARV) therapy, and who now have the honor of leading the domestic and global HIV/AIDS programs for the Obama administration, we look back in awe of the American leadership that has transformed the epidemic in the 22 years since the International AIDS Conference was last held on U.S. soil. As we remember the lives lost to this disease and commit to the vision of an AIDS-free generation, it’s worth reflecting on how U.S. leadership and U.S. investments to combat HIV/AIDS domestically and internationally are saving lives and turning the tide against the disease.

Here at home, we have more than tripled the life expectancy of people living with HIV/AIDS since 1993. More than half a million persons living with HIV receive care and treatment through the Ryan White program, established in 1990 and maintained with consistent bipartisan congressional support through four administrations. Successful prevention efforts have averted more than 350,000 new infections and mother-to-child transmission of HIV has dropped by more than 90 percent since the early 1990s. HIV prevention has also generated substantial economic benefits. A recent study estimated that HIV prevention efforts in the United States have saved $129.9 billion in medical costs.

In 2010, President Obama released the first-ever National HIV/AIDS Strategy, and he has made implementing the strategy a top priority by requesting increased funding for HIV treatment and care services every fiscal year. In Fiscal Year (FY) 2013, the president’s domestic budget for HIV/AIDS is $22.25 billion, including requesting a $40 million increase for the Centers for Disease Control and Prevention (CDC) HIV prevention efforts, and an additional $74 million to increase treatment and care services for our nation’s veterans living with HIV. The president has also increased federal investments for AIDS Drug Assistance Programs (ADAPs) to expand access to life-saving medications and assist states with ADAP waiting lists. A shared federal-state program, federal funding for ADAPs has increased every year of the Obama administration, rising from $815 million in FY 2009 to $933 million in FY 2012. In FY 2013, the president proposed a total of $1 billion for ADAPs, a $67 million increase above FY 2012. These steps have concrete results — ADAP waitlists have declined by 80 percent since September 2011, dropping from more than 9,000 to approximately 2,000 today, and the federal budget provides sufficient resources to end the waitlists once and for all, if states also step up and do their part.

In addition, people living with HIV have much to gain from the Affordable Care Act. People with HIV are more likely to be uninsured, are more likely to face barriers in accessing medical care, and often experience higher rates of stigma and discrimination than other groups. The Affordable Care Act seeks to expand Medicaid for the lowest income people; it strengthens and improves Medicare, and makes private insurance work better for all Americans, including people with HIV. The Act also prohibits discrimination on the basis of HIV status, bans lifetime limits on insurance coverage and is phasing out annual limits in coverage.

Globally and building on the strong foundation laid by President George W. Bush, the Obama administration has made unprecedented progress in the fight against AIDS. The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) has expanded its prevention, care and treatment programming, and now has significant investments in more than 80 countries in several regions worldwide. Since FY 2008, PEPFAR has increased the number of people supported on treatment by more than 2.1 million and the number of individuals receiving HIV testing and counseling by almost 19.9 million, supporting nearly 4 million people on treatment HIV testing and counseling for more than 40 million people in 2011 alone. And on World AIDS Day 2011, President Obama announced a new treatment goal of reaching six million people by the end of 2013.

Since taking office, President Obama has requested more than $26 billion in funding for global HIV/AIDS, including both bilateral U.S. government PEPFAR programs and our contribution to the Global Fund to Fight AIDS, Tuberculosis and Malaria. In his FY 2013 Budget, the president fulfilled his historic commitment to request $4 billion over three years for the Global Fund. We are grateful for the bipartisan support that PEPFAR has received from Congress since its inception and the continued bipartisan support for the Global Fund.

In FY 2013, we made the decision to re-allocate resources from within PEPFAR and take an exceptional step at a unique moment to strengthen the Global Fund. Because of the interdependence of the two programs, strengthening the Global Fund now will also help ensure the success of PEPFAR; equally as important, U.S. contributions to multilateral institutions like the Global Fund allow us to leverage increased contributions from other countries. In recent months, new and existing donors, including Saudi Arabia, Japan, Germany and the Gates Foundation, have stepped up their contributions. We know that other donors are also planning to do the same.

The fact of the matter is that our achievements are continuing to grow rapidly. This is due to greater efficiencies borne of driving our programming with evidence of impact, the growing commitment of governments and citizens in the developing world, the reduced costs of treatment, and the growing impact of prevention. With our current budget request PEPFAR will meet the President’s World AIDS Day goals for treatment, care and prevention, including the dramatic increase in people supported on treatment from 4 to 6 million. Along with complementary efforts to strengthen the Global Fund, this will accelerate progress toward the goal of an AIDS-free generation.

While tough budget decisions come with the job, President Obama has committed us to achieving more in the fight to create an AIDS-free generation in the U.S. and across the globe, and we’re succeeding. That continues the legacy of American leadership on HIV/AIDS that should make us all proud.

Dr. Grant Colfax is director of the Office of National AIDS Policy and Dr. Eric Goosby is the nation’s Global AIDS Coordinator.