Instituting Change
Veteran Activist Phill Wilson Fights to Raise AIDS
Awareness in the African-American Community
By Vince Catrone from Frontiers
By any standard the situation is stark: African-Americans account for 45% of all new AIDS cases in the United States, even though they make up only 12% of the population. When AIDS strikes black Americans, their mortality rates and productive years lost account for the highest numbers of any ethnic group. Add to that the fact that African-Americans are much less likely to have health insurance and much more likely to suffer from diseases that can exacerbate AIDS, and a problem for the black community quickly becomes a crisis.
For Phill Wilson, the alarming upswings in HIV infection and an increasing number of black AIDS patients is a concern that all African-Americans need to act upon and understand.
Wilson, a graduate of Illinois Wesleyan University and a renowned veteran AIDS activist, was, among other things, the coordinator of the International Community Treatment and Science Workshop at the 12th World AIDS Conference in Geneva, was the AIDS Coordinator for the city of Los Angeles from 1990-93, and was director of Policy and Planning at AIDS Project Los Angeles from 1993-96. He is founder of the National Black Lesbian & Gay Leadership Forum and co-founder of the National Task Force on AIDS Prevention. He has been involved in the founding of a number of other AIDS service organizations and community-based organizations, including Chris Brownlie Hospice, the AIDS Healthcare Foundation, the National Minority AIDS Council and the Los Angeles County Gay Men of Color Consortium. Added to all of this, Wilson was a member of the U.S. delegation to the 1994 World AIDS Summit in Paris and has worked extensively on HIV/AIDS policy, research, prevention and treatment issues in Russia, Latvia, the Ukraine, the United Kingdom, Holland, Germany, France, Mexico, South Africa, Zimbabwe, Zambia, Tanzania and India.
Eminently qualified, and seeing a wide disparity in access to information and training on HIV/AIDS prevention between the general population and the African-American community, Wilson founded the African-American AIDS Policy and Training Institute (AAAPTI) as the first educational organization dedicated to reducing rates of HIV infection among the black community and increasing access to treatment for those already infected.
"I began talking to a number of people about the trends of HIV in the African-American community," Wil-son says. "At the time, in spring 1998, I was working on a special issue of POZ Magazine on AIDS in Africa. I was talking with former Congressman Ron Dellums, who said there should be an AIDS 'Marshall Plan' for Africa."
In February 1999, at an African-American AIDS Conference sponsored by the Department of Health and Human Services and drug company Bristol-Myers Squibb, Wilson commented that there needed to be an AIDS "Marshall Plan" in the U.S. Within months, the AAAPTI was created by Wilson, and had released the "Nia Plan," a comprehensive blueprint for combating AIDS in his community. The Nia Plan (named for a Swahili word that means purpose) is a guidebook for a host of black social and political groups that are interested in combating HIV/AIDS from within their own institutions, but also serves as a wake-up call to African-Americans who have been reticent about addressing issues of sexuality and drug use that in some circles were considered inappropriate for discussion.
Recently, much has been made in the media over the African-American community's lack of focus on HIV/AIDS as an important issue. Although Wilson argues that many of these portrayals have been oversimplified, he describes the attitude three years ago as "best characterized as scattered, sporadic and ambivalent." To Wilson, these three words sum up the community's response to AIDS as a problem.
There were a number of organizations doing important work, but they were scattered, Wilson says. "There were efforts to organize the community that were sporadic, like the Leading for Life program at Harvard. They did some good work, but it was not sustained and it was not systemic. Then ambivalent. If you look at the Congressional Black Caucus (CBC) or even civil rights organizations, and if you asked them if AIDS was important, they would say yes. The CBC showed tremendous leadership on funding and AIDS issues, and was responsive to white AIDS organizations. They were not so aggressive when it came to talking about AIDS in their local districts."
For Wilson, stumbling blocks like fear and the stigma surrounding the discussion of sexuality and sex were barriers for the African-American community as much as they had been for other groups struggling to come up with a solution to rising rates of HIV/AIDS infection. But he adds to this list denial, which was helped by the fact that the media tended to either show images of AIDS affecting white gay men, or show the toll AIDS was taking in Africa, while leaving out any coverage of African-Americans suffering from the disease. In addition, Wilson argues that for many in the community the feeling is "there is already a full plate, and people are already busy or overwhelmed. I also have the notion that black leaders don't want to present an issue of yet another black problem. These all prevented a cohesive discussion of AIDS."
With the help of a group of other concerned community leaders, Wilson's mission was to create an organization that would look at AIDS in the black community. In what was a groundbreaking move, Wilson's mission was to approach the issue of AIDS strategically by looking at the African-American community in a holistic manner. First, Wilson and his team divided the community into stake-holder groups, identifying faith-based organizations, social institutions, professional organizations and media outlets. From there, the task was to get a better sense of how different organizations work. "No one was taking the time to understand what the culture was for these groups," Wilson explains. Third, Wilson was also interested in pointing out the myth that black organizations weren't doing anything to fight AIDS. "We found they were doing things [to fight AIDS]," he says, but noted that if the mainstream media and traditional gay organizations were not aware of them, the overall assumption was nothing was happening."
Wilson forcefully argues AIDS is not a zero-sum game when it comes to pressing issues in the African- American community. "If you are the Urban League, AIDS is a barrier to accomplishing your goals," he says. AAAPTI's core philosophy and the Nia Plan's guidelines illustrate that AIDS is a roadblock preventing groups in the community from achieving their core missions, whether the goals are equitable housing for all or better political representation.
The AAAPTI prides itself on being the first black think tank dedicated to studying the policies and science of AIDS among the African-American community. With a half-dozen areas of focus, the AAAPTI sees its mission as one of disseminating accurate information, providing technical assistance, developing model programs, creating policy documents, advocating a black point of view and training community activists in the medical facts of HIV/AIDS. What started out as a project that took up a portion of the activist's home has grown into dedicated office space (with a yearly budget of $1.5 million) that includes a multimedia training facility, a resource lab and a public gallery, which "gives the space a cultural flavor," according to Wilson.
One of the most important programs at the AAAPTI is the African-American HIV University (AAHU), a two-year fellowship that trains community-based activists on all aspects of HIV/AIDS education. According to Antonne Moore, AAAPTI's intern program manager, AAHU incorporates five course modules and four internships, including an intensive 30-day program that focuses on a major study of the science behind the disease. With an age range of 22 to 60, nationwide representation, and educational backgrounds varying from trained physician's assistants to holders of GED's, the first two classes of trainees are approximately 35% women, 40% LGBT, 30% HIV-positive and 15% with a history of incarceration. "They look like the epidemic in the black community," Wilson explains.
Trainees must be affiliated with a community-based organization working with HIV/AIDS services, which can help sponsor the trainees and provide them with an appropriate setting for their internships. "Our main emphasis is HIV," Moore explains, "but in reality [African-Americans] suffer from other illnesses. In the larger context, we encourage people to talk to their doctors about their health. This is enriching the larger community by trying to reduce negative health outcomes." Moore is also quick to point out the breadth of AAHU. "This program is unique," she argues. "There are lots of treatment seminars, but we want educators who can reference science. We need people to advocate for black people."
While AAAPTI stabilizes its programming in the hopes of getting more people involved and expanding its reach in the community, the institute's next initiative is a number of forums on black men, called Speak My Name. In a series of town hall meetings set in cities across the country, AAAPTI is getting groups of people together to talk about what it means to be a black man in America. "How do we think about HIV/AIDS?" Wilson asks. "Where do we learn to be a man? These are crucial discussions to have."
Although there is much to be alarmed about, Wilson is optimistic. It is no accident the AAAPTI's motto is "Our People, Our Problem, Our Solution."
"Everywhere I go, people want to solve this problem," Wilson says. "The question is, can we sustain the effort? That is the bottom line."
For more information, contact the AAAPTI at 213/ 353-3610 or see http://www.blackaids.org/.
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