AIDS: darkening in America
Phill Wilson thought he'd never work again. At times, in fact, he thought he'd never see another sunrise.
He had been living with HIV since 1980 and with full-blown AIDS since 1990. By 1995, he had barely survived bouts with pneumonia and pericarditis, an inflammation of the membrane enclosing the heart. He had seen the disease's progression as he watched countless friends get sick and die. "It's like you're in a queue, and the people in front of you are going through a turnstile," says Wilson, now 48. "Every time someone goes through, you feel that much closer to the front of the line. And you know the next infection is likely to be more horrible than the previous one."
Just in the nick of time for him, medical science produced a miracle--the three-drug cocktail, including new protease inhibitors, called antiretroviral therapy that, since 1996, has prolonged and enhanced thousands of lives. By 1999, Wilson was well enough to get back to work, so he founded the Black AIDS Institute."I looked at what had changed in the intervening years," he recalls, "and to my great disappointment, there had not been a lot of progress in fighting AIDS in the black community." He saw that, in the public mind, AIDS had been transformed. "This epidemic came about in 1980, and that epidemic was perceived as a gay epidemic. And then following the protease inhibitors, the epidemic came to be seen as a global epidemic," he says. But most Americans didn't consider the United States as part of that worldwide disaster. "There was a shifting of view. We went from being internally focused on AIDS in young, white gay men, to AIDS in Africa, the Caribbean, and Eastern Europe. But through all of that, this constant epidemic in people of color in America has been ignored. The epidemic is having a devastating effect in black communities."
Disparities. Most black AIDS organizations in the United States were small and focused largely on prevention education. There were far fewer groups educating the community about treatment, even though the epidemic has a strong hold on black Americans. African-Americans represent 12 percent of the population but account for more than half of all new HIV infections. "The disease is getting darker and darker and darker, and we see a pulling back of prevention efforts and a flatlining of treatment," he says.
The Black AIDS Institute, located in Los Angeles, has an African-American HIV University, an education fellowship aimed at training community activists on all aspects of AIDS. Debra Parmer is a graduate, class of 2002. With a background in hospital administration and a working knowledge of testing and counseling for HIV, she thought she knew a lot about the disease. "I learned I didn't know anything," she says. Now executive director of the Northeast Ohio African-American Health Network, she understands the importance of talking to people in a language they understand. That language is not medical jargon--for example, nonnucleotide reverse transcription protease inhibitors.
"The language of medicine goes over their heads," she says. But sick people, dying people, can be taught to understand the meaning of T-cell counts (higher is good) and viral loads (lower is good) and the importance of the medicines. They get the importance of taking their drugs on schedule every single day or risk having the virus mutate and render future treatment ineffective.
"I tell people that there are limited drugs available, and if they find a combination that works, they should cherish it," she says. "They often say, 'I'll never miss another dose again.' "
Facing disaster. Getting individuals and local organizations involved is key. Wilson has spent the past five years talking with leaders in civil rights organizations, the black media, the seven major black fraternities and sororities, and historically black colleges and universities, enlisting their support in making AIDS education a priority. "We need to bridge the gap between the medical community, which is overwhelmingly white, and the HIV community, which is increasingly black," says Wilson. "We are faced with the worst health disaster that our community has seen in the last century. What I do is ordinary. It's only extraordinary because we're not all doing it."
That the organization is successful is bittersweet. It is increasingly easy to debunk the myth that AIDS is a white gay male problem because people see otherwise. "We've reached a critical mass where everyone knows someone, and it breaks my heart that so many people had to be infected with HIV, to get AIDS, to die, before we got to this point," he says.
In America's black communities, AIDS needs a Marshall Plan. Wilson has started one, and, using the Swahili word for purpose, calls it the Nia Plan.
This story appears in the July 12, 2004 print edition of U.S. News & World Report.