The challenge

"Our house is on fire," says Phill Wilson. "The fire truck arrives, but we won't come out, because we're afraid the folks from next door will see that we're in that burning house. AIDS is a fire raging in our community and it's out of control." Some 40,000 Americans a year are diagnosed with AIDS. More than half of them are black. “While African-Americans represent around 12 percent of the total United States population, we account for 37 percent of the cumulated AIDS cases,” Wilson says. The Centers for Disease Control, listing AIDS as the leading cause of death in black men ages 18-44, estimates that one in every 50 black American men is H.I.V. positive. One in every 160 black women is infected and AIDS is the second leading cause of death among women in the same age range. Thirty percent of young gay black men living in cities are H.I.V. positive. Sixty-two percent of all AIDS infected children under the age of 13 are black and more than 50 percent of H.I.V. positive persons over the age of 55 are black. “H.I.V. infection never happens in isolation,” he says. People get infected because of a matrix of social, psychological and economic factors, and, once they have the virus, Wilson notes, “the quality of treatment they receive usually depends on many of these same factors.” H.I.V. infection is, he says, “a hydra-headed problem.” When AIDS struck African -American communities, “we had, and continue to have, so many other problems that it was easy to say that AIDS was a white gay disease and not our problem.” Eric Goosby agrees with that analysis. Goosby, who works closely with Wilson to educate the public, is director of the Office of H.I.V./AIDS Policy in the U.S. Department of Health and Human Services (D.H.H.S.). “The degree of self recrimination that gay people feel toward themselves is not dealt with. This leads to a pattern of promiscuity – self-destructive behavior that is quite predictable,” says Goosby. A June 11, 2001 Newsweek article, which profiled Wilson, puts the challenge in perspective. “Closeted sexuality is, of course, not unique to blacks, but the level of homophobic rhetoric in black communities, from hip-hop lyrics to Sunday sermons, makes denial …especially high. Men with double lives …are unlikely to use condoms with their wives and girlfriends for fear of outing themselves…. The consequences are catastrophic."

Seeds of commitment

“There are a lot of things that motivate me to do the work I do,” Wilson says. The most powerful are personal. He is a gay, black man living with AIDS. “If not me, who?” He is also raising two teenage nephews. “They fuel my passion to really end the AIDS epidemic. They remind me of the dangers of complacency. Every morning when I send them off to school and every evening as I watch them say grace at the dinner table or struggle to finish their algebra or history homework, I worry about what the future holds for them. I have a responsibility to teach them by example to do their part and to help them develop the self-confidence to know that they can make a difference.” Finally, he has seen the devastation caused by H.I.V. and AIDS. “I can't count all the deathbeds I've sat beside. I don't remember all of the hospital rooms I've visited. I don't want to think about how many eulogies I've given. I know that the only way to defeat H.I.V./AIDS in black communities is to develop indigenous, culturally appropriate models that take into account the reality of the lives of black people.”


Accomplishments

Wilson has attacked the “hydra-headed problem” in multiple ways. As the founder and director of African American AIDS Policy and Training Institute (A.A.A.P.T.I.), the nation's first African-American AIDS think tank, his primary mission is to create black, community-based AIDS leadership. In 1999, the organization began work on an African-American strategic plan for AIDS, called the Nia Plan, from the Swahili word for “purpose.” It identifies black stakeholders, analyzes what they have done on AIDS, and recommends new steps for them to take. He pulled together more than 40 leaders from key black institutions and the ranks of people living with AIDS, along with health workers and policy makers. “In drawing up the plan, we identified key sectors of the African-American community that have not been active in AIDS, and we have set about mobilizing them,” he says. The plan's first draft was presented at town hall meetings in 18 cities as well as to key black leadership groups such as the Congressional Black Caucus and the N.A.A.C.P. The final draft was released last year at the National African-American AIDS Conference in Washington. A.A.A.P.T.I.’s flagship program is the African-American H.I.V. University, which operates in partnership with D.H.H.S. This program teaches people with H.I.V. and community advocates the science about AIDS and encourages individuals to design treatment and prevention programs and policies that are effective in their own communities. The university also teaches effective advocacy, organizing, mentoring and other leadership skills. It directly trains 40 people a year, who in turn reach almost 20,000 people with critical treatment education and train an additional 400 potential leaders. “While we track and document these achievements, the ultimate result of the H.I.V. University is a ‘combination therapy’ that will attack the epidemic in ways that no one can foresee,” says Wilson. A.A.A.P.T.I. also educates the public, focusing on the black media. The American Urban Radio Network (A.U.R.N.), the largest producer of black radio in America, provides AIDS programming to 300 radio stations. “We supply the network with information, hook it up with African-American sources and contacts and advise it on AIDS programming,” Wilson says. He and A.A.A.P.T.I. created a similar program with the National Newspaper Publishing Association, the black publishers' group representing 250 black newspapers. The newspaper collaboration includes an upcoming training program for journalists. A.A.A.P.T.I.’s newsletter, Kujisource, has a readership of 20,000; the organization’s web site (www.BlackAIDS.org) offers over 500 pages of information. Wilson and other A.A.A.P.T.I. leaders give numerous speeches in venues ranging from small churches to the Million Man March. A.A.A.P.T.I. also seeks to identify "best practices" in AIDS prevention and care and to share that information with those working on the front lines of the epidemic.



His leadership style

Wilson is viewed as one of the most powerful and articulate spokespersons addressing H.I.V. and AIDS in the African-American community. He travels extensively and speaks to policy makers, community leaders and educators. Consequently, he is often viewed as the "face" of A.A.A.P.T.I. However, he believes in shared leadership and works hard to make sure his coworkers become better known to media. In addition, Eric Goosby of D.H.S.S says, “his leadership is one of not being prescriptive so much as being willing to call it like it is; he won't tell you what to do; he'll show you what the issues are so that you know what you need to do,” Historically, AIDS activists have tried to persuade traditional African -American organizations to add H.I.V./AIDS to their already full plates, says Wilson. “A.A.A.P.T.I. is instead working to demonstrate how H.I.V./AIDS is relevant to existing organizational agendas. AIDS is a health issue. But it is also an economic issue, a social justice issue, an urban renewal issue, a civil rights issue, a human issue.”


The future

A.A.A.P.T.I.’s next target: civil rights organizations, which “are not contributing as much as they could to the fight against AIDS,” Wilson says. The organization’s goal “is to motivate them to look at their missions to see how they can best address AIDS.” A.A.A.P.T.I. is currently writing a report on what civil rights organizations have done so far to address AIDS and what they could do. He believes that knowledge and honesty about H.I.V./AIDS is a civil right, and these organizations will soon be on the front lines, fighting the fire next time.


More about Phill Wilson

“For all his activism, Wilson believes the most effective AIDS work happens on a smaller scale. ‘Before you can convince people to save their lives,’ he says, ‘you have to convince them their lives are worth saving.’ … . In between meetings and caring for his nephews, Wilson wages his personal battle with the disease. Infected with HIV in the early 1980’s, he has been living with AIDS since 1990….But he is not bitter, he says, about his own fate. He had contracted the virus before anyone knew what it was or how to prevent it. What Wilson lives for now is stopping ignorance from taking more black lives….”
– Newsweek, June 11, 2001

“Ujima is the 3rd principle of Kwanzaa. It stands for ‘collective work’ and ‘responsibility.’ It reminds us that we have a role to play in the community, society, and world.”
– Phill Wilson