Concerned more than ever about the trajectory of the HIV epidemic in Black communities, the dangers of abstinence-only education programs, and the issues surrounding aging for long-term survivors like himself, Phill Wilson, founder and CEO of the Black AIDS Institute, remains a vigilant force in the fight against HIV/AIDS
Text & Photos by Sean Black
Do you know the work of William Wegman?” asks Phill Wilson. He references the photographer known for shooting Weimaraners to help me visualize the breed of dog that he strides alongside as we speak over the phone. Now eight, Puck has been a beloved pet and companion of Wilson’s since he was just a puppy.
Besides being “good for his heart,” Wilson, fit and active at fifty-seven, explains how their routine walk through L.A.’s Griffith Park, near his Loz Feliz neighborhood home, offers him the chance to clear his mind. “One of the benefits of walking Puck in the park is I get to escape for a minute. Having these minutes, helps me stay present during the hard times.”
Facing his share of hard times, Wilson, like so many of us battling HIV can never fully escape the virus that he’s been living with since 1980. But rest assured; HIV is not escaping Wilson either. Not even for a minute.
A watchful guardian with diplomatic finesse, Wilson has a résumé that is extensive and merits mentioning. He has served as the AIDS Coordinator for the City of Los Angeles, the Director of Policy and Planning at AIDS Project Los Angeles, a co-chair of the Los Angeles County HIV Health Commission, and an appointee to the HRSA AIDS Advisory Committee. He has facilitated the International Community Treatment and Science Workshop at a number of International AIDS Conferences and the Ford Foundation named him one of twenty award recipients for the Leadership for a Changing World, in 2001. He was a member of the U.S. delegation at the 1994 World AIDS Summit in Paris and has worked extensively on HIV/AIDS policy, research, prevention, and treatment issues internationally. He was the recipient of the Delta Spirit Award from the Los Angeles Alumnae Chapter of Delta Sigma Theta Sorority and awarded the Discovery Health Channel Medical Honor in 2004. He was distinguished as one of the “2005 Black History Makers in the Making” by BET.
An openly gay man living with HIV, Wilson co-founded the National Black Lesbian and Gay Leadership Forum as well as the National Task Force on AIDS Prevention. He has been involved in the founding of a number of AIDS service and community-based organizations, including the Chris Brownlie Hospice, AIDS Healthcare Foundation, the Greater Than AIDS testing and awareness campaign, the National Minority AIDS Council, the Los Angeles County Gay Men of Color Consortium, and the Communities Advocating Emergency AIDS Relief (CAEAR) Coalition. Holding a BA in Fine Arts from Illinois Wesleyan University he has published articles in the Los Angeles Times, New York Times, Essence, Ebony, Vibe, Jet, as well as HIV/AIDS-specific periodicals.
With this impressive record of activism and achievement, Wilson broadened his advocacy reach in 1999 by founding the Black AIDS Institute in response to the impact that HIV infection was having among his peers.
“The Black AIDS Institute was founded because we were not doing enough to change the trajectory of the epidemic in Black communities,” states Wilson. “When Black people, or any people for that matter, are not explicitly included, they are implicitly excluded. The Institute isn’t [nor was it ever] designed to divert attention away from any other community. The Institute shines a light on the disproportionate impact it was having in Black communities and tries to do something about it.”
Problematic still in both magnitude and ratio, recent findings presented by the CDC reiterate the fact that African Americans continue to be the racial/ethnic group most affected by HIV. In 2010, Black people accounted for forty-four percent of all new HIV infections, despite making up just twelve to fourteen percent of the overall population. Black men accounted for seventy percent of new HIV infections among all adult and black adolescents (aged thirteen years or older) with an estimate that is seven times higher than that of white men and twice as high as that of Latino men.
The National Minority AIDS Council, in which Wilson has played a key role, reports that black gay men are the only population in the country facing increasing rates of HIV infection. New infections among young black gay and bisexual men rose forty-eight percent from 2006 to 2009.
HIV Prevention Trials Network (HPTN), a worldwide collaborative clinical trials network sponsored by three NIH Institutes, including the National Institute of Mental Health, the National Institute of Allergy and Infectious Diseases and the National Institute on Drug Abuse, suggested in their recently released HPTN 061 research study that African American gay and bisexual men face a sixty percent chance of acquiring HIV by the age of forty.
Since its inception over fifteen years ago, the Black AIDS Institute, recognized as the only national HIV/AIDS think tank geared exclusively toward the Black population, aims to “confront” HIV in Black communities by engaging and mobilizing Black institutions and individuals. The Institute interprets public and private sector HIV policies, conducts trainings, offers technical assistance, disseminates information, and provides advocacy mobilization from a uniquely and unapologetically Black point of view.
The Institute recently put out its Light at the End of the Tunnel report which maps out a five-year strategic plan with an overarching mission to make sure that at least eighty percent of the over 500,000 Black Americans estimated to be living with HIV achieve viral suppression by 2017.
“We’re still not having enough of a conversation about how to get to the endgame,” warns Wilson. “We talk about an AIDS-free generation and we talk about ending the AIDS epidemic but we are not having specific conversations; a work plan. What do we need to do? When do we need to do it? And, who needs to do it? Right now we’re having all these theoretical and polemic conversations; enough talking already, let’s take action.”
One of those very specific and strategic conversations Wilson feels is crucial in addressing the alarming rise of HIV incidence among the Black MSM community is viral suppression through the implementation of a robust PrEP (pre-exposure prophylaxis) treatment and adherence plan.
“Certainly, people need to understand the importance of PrEP: Who are the best candidates, how do you get the best outcomes, and what are the risks? I think it is important that we begin to educate people about PrEP. By itself, it is not a panacea. It is an additional tool in our tool kit. People are so desperate to find a silver bullet and when something seems not to be that silver bullet, they lose sight of its proper role. That’s why we focus on raising the HIV science literacy in our communities. PrEP is one of those tools that we have to better fight AIDS.”
As part of the Black AIDS Institute’s outreach, this National Black HIV/AIDS Awareness Day (February 7) they have partnered with HPTN and the U.S. Department of Health and Human Services, Region IV, to provide assistance and support to its recently organized Black Treatment Advocates Network (BTAN), who will be sponsoring PrEP forums and workshops in approximately sixteen cities around the country.
The Institute is confident that BTAN will help fulfill its critical mission as numbered in Light at the End of the Tunnel. The report proposes five “Strategic Pillars” which include:
(1) Ensuring that at least ninety-five percent of Black Americans living with HIV know their HIV status.
(2) Eliminate gaps in the HIV treatment cascade for Black Americans living with HIV.
(3) Deliver high-impact HIV prevention services to all Black Americans at risk of HIV.
(4) Invest in strategic HIV-related research to accelerate the end of AIDS in Black America.
(5) Build the capacity needed in Black communities to accelerate the end of AIDS in Black America.
In Wilson’s “Welcome to 2014” he refrains from any finger-wagging rhetoric at Healthcare.gov’s initial problems but instead capitalizes on the plan’s overall benefits and what the Affordable Care Act could mean for people living with HIV/AIDS.
Rather than poking holes in its widely reported implementation pitfalls, Wilson, as always, offers optimism. “We should direct our attention toward the opportunities presented by this new plan—not its problems. Today, over 2 million Americans, who previously didn’t have access to healthcare, now do: No more pre-existing conditions exclusions, and no more annual and lifetime caps.”
In order to effectively derail the course of the epidemic Wilson elaborates on the importance of the fifth pillar. “What we know now is that there is an insufficient number of folk in our communities that [fully] understands biomedical intervention. Part of this ‘capacity needed’ is for people to have a better understanding of what biomedical interventions do and how they work. [As I mentioned earlier] we are focusing on raising the science literacy so people who work in the field actually know what they need to know about the new post-HIV biomedical intervention environment and a post-healthcare reform environment as well. This will be critical in order to get people into treatment and help them stay in treatment.”
“Phill Wilson has been a transformational leader in the HIV/AIDS community, especially when it comes to addressing issues facing African Americans, communities of color, and bringing gay and bisexual men to the forefront,” shares Congresswoman Barbara Lee.
Serving California’s newly designated 13th District (formerly 9th which includes Oakland, Berkeley and parts of the East Bay area and Alameda County), U.S. Representative Lee has been one of our biggest political allies in the global fight to end AIDS.
The Honorable Congresswoman continues, “With his leadership and the work of the Black AIDS Institute, we have made great strides in educating and involving communities of color all over the country, who are hardest hit by HIV. It’s been a great honor to work with him over the years, and I’m encouraged by his hard work and dedication.”
Congresswoman Lee, a founding member and co-chair of the Congressional HIV/AIDS Caucus, recently introduced The Repealing Ineffective and Incomplete Abstinence-Only Program Funding Act of 2013, HR 3774. Endorsed by advocacy groups including the Sexuality Information and Education Council of the U.S. (SIECUS), American Civil Liberties Union, Human Rights Campaign, and Planned Parenthood, the act aims at halting federal support of abstinence-only-until marriage programs and instead allocates funding towards a broader and more comprehensive sex education program.
Backing Congresswoman Lee’s bold piece of legislation, Wilson asserts: “Two of the reasons why abstinence-only programs are dangerous are: One, they deny young people the information they need to protect themselves and, two, [they] are stigma-based. What happens is that not only do young people not have the tools they need to protect themselves properly, they are fearful of seeking out information once they have a risky encounter and therefore it delays them in getting the help that they might urgently need.”
Called “poor fiscal and public health policy” by The Institute of Medicine of the National Academy of Sciences and discredited by a Congressionally mandated study in 2007, the abstinence-only-until-marriage programs are costly in more ways than one. The United States has spent over $1.75 billion (since 1996) in federal funding for these programs, which have failed to teach teens how to prevent unintended pregnancy or sexually transmitted infections, including HIV.
“We need to get serious about educating our young people about sex,” demands Congresswoman Lee.
Wilson feels, that when it comes to sex education, it is important for people who are HIV-positive to be included in the prevention conversation and that, even though they are already infected themselves, participating in this discussion can still yield affirming personal gains.
“The reason why I have come out about my HIV status is not just to help others, but to also help myself. I need to have a safety net around me to remind me to do the things that I need to do to stay healthy. I can’t do that if people don’t know what I need help with. I also think that as people are having more open conversations and acknowledging that they are living with HIV, they will be more inclined to seek and stay in treatment.”
Wilson also feels that community involvement will help with loneliness and feelings of isolation. “Even in my own life. I often think about the men who were in my life, in my formative years, who are gone and are no longer with us.”
Besides missing his friends and losing the security and benefits of those long-term friendships, Wilson didn’t expect to have to deal with the challenges of getting older. “Until recently, there have been few conversations about aging with HIV. I think that for many of us living longer with HIV, just reorienting ourselves this late in the game is difficult. Many men in my generation did not anticipate that growing old would be a reality in our lifetimes and therefore we did not prepare for the health issues that come along with the natural aging progression. We don’t have as much time to make those adjustments now as other [younger] people do. I think that this is going to be a significant challenge for many older folks living with HIV.”
Complicating the delicacy of this situation further is what Wilson considers a variant of post-traumatic stress disorder; relating the ravages and aftermath of AIDS to that of intense experiences like war. “I think the way a lot of us [long-term HIV survivors] view the world is certainly influenced by the trauma that we experienced living through the early days of AIDS. Though many of us have survived longer, it is still difficult for us to [fully] wrap our brains around the issue of aging. I think that we see situations today where there are people, who have lived through the worst of the AIDS epidemic, and yet still find themselves infected with HIV. I think it could be linked to psychosocial impact from trauma, like survivor guilt. The fact that people are still being diagnosed late is evident that there is still much work to be done around AIDS awareness.”
Wilson feels that despite a dire need for a reeducation of people about the resources and alternatives available to them, stigma continues to be a problem that prevents people from addressing their health and maintaining a consistent relationship with a doctor. “It prevents people from taking care of themselves—people show up in the emergency room with full-blown AIDS and a CD4 count of fifteen because they are frightened and they do not have a relationship with an ongoing primary care physician.”
Wilson believes in readdressing how we disseminate life-saving messages and champions the initiative to “think outside the box” when it comes to reaching greater audiences and reducing stigma and shame. “I think there is a great need for the creative communities’ involvement in the fight against HIV. It may even be greater now then it was in the early days of the epidemic. There continues to be a need in the creative community in fighting stigma, absolutely, but now there is also a role for the creative community to carry out vital educational elements in fighting HIV, and in finding ways to message treatment, prevention, and testing. There are all these steps along the way to get us to that better outcome along the HIV continuum and the creative community can help us every step of the way.”
In order to reverse the epidemic in Black America, Wilson tells us that it will require a level of commitment, evidence-based action, and follow-through unlike that required for any other group of people in our country.
In his parting words to A&U, Wilson wisely concedes. “We can’t end the AIDS epidemic in the United States unless we end it for everyone. If we have a raging epidemic in any community then all of our communities are at risk. We have to understand that. How we respond to the AIDS epidemic will reflect who we are as a nation. If we [truly] believe in the promise of our great nation, then we must come together to address this issue as one community.”
Sean Black is an A&U Editor at Large.