Danny Glover celebrates each birthday at a place of social significance. For his 66th birthday, he was in Washington, D.C., for the 19th International AIDS Conference, where the prevailing sentiment was that the epidemic’s end is in sight.
“We need to be part of the dialogue,” said Glover, who watched a close friend with AIDS die years ago. He discussed the need for people of all ages and backgrounds to fight HIV/AIDS locally and globally, echoing the conference’s theme, “Turning the Tide Together.”
The activist actor serves as board chair for TransAfrica and a board member of the Black AIDS Institute along with actress Vanessa Williams. Glover and Williams, both guest speakers at the conference that ended the last weekend in July, were among more than 30,000 attendees along with others from all over the world participating by satellite.
The massive lineup — only part of which could be listed in the inch-thick program reminiscent of a telephone directory — included pre-conferences, panel discussions, scientific sessions, seminars, meet-ups, dance, theater, art and film screenings.The public was able to participate in some of these activities at the Global Village.
In addition, the Black AIDS Institute, which was part of the coordinating committee and sponsored more than two dozen events, will hold community post-conferences to follow up on the discussions in Dallas, Atlanta, Oakland, New York, Jackson, Miss., and other cities, beginning the first week in August through the fall. (See “How Can I Get Involved?” below.)
An AIDS-Free Generation
Delegates celebrated gains, such as promising research on infection control,and assessed unfinished business.They filled the Washington Convention Center with passion, optimism, frustration and sometimes anger.
“What would an AIDS conference be without a little protesting?” U.S. Secretary of State Hillary Clinton asked, acknowledging the mixed response she received as she stepped to the podium during the opening plenary session. “We understand that. Part of the reason we have come as far as we have is because so many people all over the world have not been satisfied that we have done enough. And I’m here to set a goal for a generation that is free of AIDS.”
“Welcome to the United States,” Clinton said. “We are so pleased to have you all finally back here.” The conference hasn’t been held in the United States in more than two decades, but it returned this year after the Obama and Bush administrations worked with Congress to lift the ban preventing people living with HIV from entering the country.
“AIDS is still incurable, but it no longer has to be a death sentence,” Clinton said in discussing gains since the 1990 gathering in San Francisco. “This is a fight we can win.”
Hope for a Cure
Anthony S. Fauci, M.D., an immunologist and head of the National Institute of Allergy and Infectious Diseases, also offered hope from a medical perspective.
“Even without a vaccine or a cure, it became clear this week that science has given us the tools we need to dramatically change the course of the HIV/AIDS pandemic and ultimately end AIDS,” Dr. Fauci said. “Any argument that this cannot be achieved because we do not have evidence-based tools is no longer valid. Science has given us the tools. Now they must be applied.”
Studies released at the conference on antiretroviral therapy (ART) fueled hope for a cure. One indicated the potential ability to control the infection with early treatment. In a smaller study, researchers found no traces of the virus after administering chemotherapy and stem-cell transplants to two patients on ART.
For the first time, the Federal Drug Administration approved a drug to minimize HIV risk in uninfected people. The antiretroviral drug, Truvada, made by Gilead Sciences, is designed for HIV-negative people who are at high risk, such as men and women who have infected partners. Known as PrEP or Pre-Exposure Prophylaxis, it was approved just before the conference as a daily oral medication to be used along with other prevention methods, including condoms.
“Not everyone needs PrEP,” cautioned Kenneth Mayer, co-chair and medical research director of the Fenway Institute in Boston.
Phill Wilson, founder, president and CEO of the Black AIDS Institute, echoed Dr. Fauci’s optimism, but with several caveats. Wilson is the first African American to give an opening address at the gathering, and he also noted that this was the “first International AIDS Conference where we know that we can end AIDS.”
“David only had a slingshot, and he felled Goliath,” said Wilson, a member of the President’s Advisory Council on HIV/AIDS and a key speaker throughout the week. “Our tools are not perfect, but they are good enough to get the job done if — and this is a big if — if we use them efficiently, effectively, expeditiously and compassionately.”
Cost of Care
Throughout the conference, speaker after speaker said winning the fight against HIV/AIDS requires a comprehensive strategy that includes science as well as grassroots input. Most of all, they stressed, it means stronger financial commitment from the United States and other donor nations to meet estimates of up to $24 billion a year by 2015. Three-fourths of the cost stems from antiretroviral treatments.
Clinton announced that the United States would invest:
• $80 million to treat HIV-pregnant women to reduce mother-to-child transmission globally
• $15 million to research which interventions are most effective for certain groups
• $20 million for a challenge fund to support countries expanding their services and
• $2 million to reach key populations through the Robert Carr Civil Society Network Fund.
Wilson urged delegates to share lessons that could be applied all over the world. He characterized the epidemic in the United States as black, brown and big. “The AIDS epidemic in America is a tale of two cities,” Wilson said, with people of color accounting for nearly 70 percent of those infected. “It is definitely the best of times and the worst times.”
“We face gigantic challenges,“ he said. Here’s a look at the duality that Wilson and others highlighted:
Safer Sex: “Live, Love Condomize!”
The consistency of condom use, which helps to reduce sexually transmitted diseases, shows slight improvement for unmarried people between the ages of 15 and 44, according to studies by the Centers for the Disease Control and Prevention between 2002 and 2010.
The percentage of singles claiming to use condoms every time they had sex during the four weeks before being surveyed rose from 22.5 percent to 24.8 percent for men, and from 19.8 percent to 21.3 percent for women. Increases were smaller for those who used condoms at least some of the time.
The number of children and adults newly infected with HIV, the virus that causes AIDS, dropped 19 percent from 3.1 million in 1999 at its peak globally to 2.6 million in 2009, according to UNAIDS. However, inconsistency in safe sexual practices and other factors contribute to ongoing infections.
African-American women and bisexual or gay men account for a disproportionate share of the 50,000 new infections each year in the United States. “By the time a black gay man reaches 40 years old, nearly 50 percent of them, 6 out of 10, will be HIV positive,” Wilson said.
“Live, Love Condomize!” was the message on nearly a million packages of condoms distributed at the conference, on colorful displays of condoms and on T-shirts worn by performers promoting safer sex.
Nonhlanhla Khanyile, a reproductive and sexual health educator for Support Worldwide in South Africa, demonstrated how the female condom can be used to protect and pleasure men and women. Khanyile, who lives in South Africa, said heterosexual couples as well as gay men can use the condom.
Some also debated the merits of increasing voluntary male circumcision as part of the protection strategy to help reduce the spread of the human immunodeficiency virus in Africa. Vaginal microbicides continue to be tested to help protect women.
African Americans and Latinos report higher rates of testing than whites. More men and women are asking partners about their HIV status or even going to be tested together before having sex. Those who can’t find the words to say can get a little coaching. And the tests themselves are easier, quicker and more available.
People can get preliminary results in 20 minutes from rapid tests that involve a quick swab of the inside of the mouth at festivals, events on campus or even the DMV in some cities. Some are also using home collection kits and sending blood samples from finger pricks to testing centers.
In a 2011 study, 77 percent of African-Americans between ages 18 and 64 said they had been tested for HIV. Although 43 percent of respondents had been tested within the previous year, 22 percent had never taken a test. This is problematic, experts say, because many African-Americans are diagnosed with AIDS at later stages. In addition to the risk of infecting others, they often receive treatment later (or not at all in some cases) and face more complications if they also have diabetes, heart disease or health issues.
Erasing Stigma at Home, Church and Work
While people with HIV/AIDS are no longer shunned to the same degree as they were in the eighties and nineties, stigma still persists. It prevents people from telling the truth about their lives, being tested, getting treatment or even keeping up with it. It makes people hold back from falling in love, spending time with their families, going to church, getting jobs or seeking promotions, speakers said. It not only leads to depression, but also to suicide in extreme cases.
“I’m alive today, because I have the love and support of family and friends,” said Wilson, who is openly gay and has lived with HIV for 32 years. He encourages others to follow his lead by being open about their HIV status and ideally their sexual orientation.
"Living openly and proudly with HIV not only confronts HIV stigma, but it also helps build demand for essential services," Wilson said.“It also communicates that it’s possible to live a full, healthy life with HIV, and that’s important. When you come out with your HIV status, you not only save your life, but other lives as well.”
That was the goal of Jamar Rogers, a contestant on “American Idol” and “The Voice.” Rogers discovered that was HIV positive on the heels of recovering from a crystal meth addiction. Initially, he kept his illness a secret, but as he drew more attention on “The Voice,” he decided to share his story with viewers.
Rogers continues his outreach through social media and as a celebrity ambassador for the Black AIDS Institute. He says that his involvement and openness have helped him “stand a little taller” and turn his life around.
DeepaRao, Ph.D., a clinical psychologist at the University of Washington in Seattle, who conducts research in the United States and in India, has adapted exercises from the HIV Stigma Toolkit, originally developed in Zambia. She worked with 24 African-American women living with HIV for three months to 25 years in Chicago and Seattle.
“We asked them to share their methods of coping with stigma, like prayer or speaking with family,” Rao said during a session titled “Stigma: Breaking the Silence.”
Researchers also showed the women four videos of stigmatizing situations. The videos had multiple endings so that the women could discuss the pros and cons of different responses to the scenarios (passive, aggressive or assertive) as well as how they would deal with various situations.
When evaluated after the program, the women showed a preliminary drop in stigma levels. Rao wants to expand the study with a full-scale, randomized clinical trial in Chicago and Birmingham, Ala.
The Debate on Treatment as Prevention
“Treatment as prevention depends on your perspective, and there are a variety of issues we have to think about as we try to roll this out,” said Kenneth Mayerof the Fenway Institute in Boston, in the session on “Treatment as Prevention: Is it Time for Action?”
“Clearly scaling up of testing has to be a fundamental piece of this equation, and this had to really happen yesterday,” he said.
Mayer said that the treatment as prevention approach is rife with complexities that require multiple interventions. “It’s not just take this pill and call me in the morning,” he said, noting that treatment can make some underlying disparities worse. He also called for:
• Culturally tailored programs
• Financial and other resources to effectively link people to care
• Compliance in following treatment
• Strategies to deal with relationship issues and depression.
A major issue is “prioritizing who gets treated first,” Mayer said. “If you are a non-Hispanic black, you’re a little less likely to be prescribed antiretroviral therapy compared to others in the same setting.”
Looking at the title of the session, Anitha Asiimwe, deputy director general of Rwanda’s equivalent of the CDC, said: “For me, it was time way, way back. A number of years ago, it was time for us to use treatment as prevention.”
“Yes, of course, there are complexities, but you face the complexities,” she said with testing earlier and more often as well as ensuring that those who test positive adhere to treatment. In the most recent national study, Asiimwe said, 92 percent of the Rwandans on ART were compliant. “There’s definitely a package of what we do to ensure that people stay on therapy.”
Rwanda has set a goal of a mother-to-child transmission rate of less than 2 percent by the end of 2015. “The big question that comes up is how are you going to reach all those women,” Asiimwe said. “What does it mean for one single village?” In some cases, she said, they are fortunate to have a ratio of one pregnant woman for each community healthcare worker.
Benedict Xaba, minister of health in Swaziland, said his country’s strategy of gaining buy-in from the community and local leaders has contributed to lowered rates of new infections overall. “Eighty-three to 85 percent of our people are already on ART,” Xaba said. “We’ve also done very well on our prevention of mother-to-child transmission.”
Julio Montaner, director of the British Columbia Centre for Excellence in HIV/AIDS in Canada, reported on success with antiretrovirals in reducing AIDS rates there. “We used to have more than one death per day occurin in British Columbia as a whole,” Montaner said. “We now rarely see anybody dying as a result of HIV or AIDS.”
Sean Strub, panel co-chair and founder of POZ Magazine, turned up the heat and drew laughter from the audience when he implied that the discussion had been tepid at best. “It’s a little bit like discussing is ice cream great or is it good,” he said.
“Ra-ra messaging,” Strubsaid said, was being “slammed down the throat of everybody involved in the epidemic, and people who have had a different view have been silenced.”
Strub, who is openly gay and HIV positive, also criticized the term treatment as prevention. “That very phrase is an insult that puts our lives, our health as secondary,” he explained. “It contributes to the further demonization of people with HIV and seeing us solely through our potential to transmit a virus — as viral vectors, as potential infectors.”
He also noted that some people who want treatment can’t get it, that side effects include irreversible kidney damage and that resistance could reduce drug effectiveness down the road.
“We are creating a problem that we could avoid if we would put the human rights concerns first, which is not what has happened with the treatment as prevention discussion,” Strub said drawing applause. This includes informed consent and coercion, he said.
Mayer pointed out some vagaries of informed consent. “It isn’t informed if people are not given full information, or they’re given misleading information, or information is omitted, and that is what is happening all over the United States.”
“People should not be coerced,” Xaba agreed. “In Swaziland, we don’t have people waiting to get treatment. We don’t have a waiting list. Everybody who wants treatment gets the treatment.” However, he acknowledged that some people still don’t know their status.
“The day will come when this epidemic will be over,” Wilson said. “This is our time. This is our defining moment. Together, we are greater than AIDS.”
Yanick Rice Lamb, co-founder of Fully-Connected.com, teaches journalism at Howard University.
How Can I Get Involved?
The Black Aids Institute is inviting the public to attend post-conferences being held in more than cities around the country. For more information, call (213) 353-3610.
Atlanta Sept. 13-14
Birmingham, Ala. Sept. 6-7
Chicago Sept. 6-7
Dallas Oct. 4
Houston Oct. 19-20
Jackson, Miss. Sept. 24-25
Philadelphia Sept. 19-20
Los Angeles Sept. 18-19
Miami Aug. 6-7
New Orleans Sept. 14-15
New York Aug. 2
Oakland Aug. 30-31
Washington Sept. 14-15