In His Own Words: Community Activist Phill Wilson Reflects on 30 Years of AIDS

In commemoration of 30 Years of AIDS, we are sharing the personal stories of colleagues and community members who have been around since the very beginning of the epidemic in 1981. In this spirit, we recently interviewed Phill Wilson for a symposium entitled “Commemorating 30 Years of Leadership in the Fight Against HIV/AIDS” that Secretary Kathleen Sebelius will host tomorrow, June 8. Phill is president and CEO of the Black AIDS InstituteExit Disclaimer and a member of the Presidential Advisory Council on HIV/AIDS (PACHA). Below are highlights of the transcript from our interview.How did you first become aware of what we now call HIV/AIDS?

I've been involved in the AIDS epidemic from the very, very beginning. In 1981, I was living in Chicago. I was a young gay man and my doctor discovered that I had swollen lymph nodes. He had recently read an article about gay men, and swollen lymph nodes and this new disease. Shortly after that, my partner and I moved to Los Angeles, where we got introduced to some of the early organizations -- the Kaposi Sarcoma Foundation from San Francisco. We participated in the first candlelight vigil in Los Angeles. And the first trainings of the AIDS hotline for AIDS Project Los Angeles.

Not long after that, it became clear that this was going to be a major health issue at that time, among gay and bisexual men. Little did we know that this disease would turn into the health catastrophe of our generation.

This month marks 30 years since the first reported case of AIDS in the U.S. From your perspective, what has changed since the beginning of the epidemic in 1981?

When I think about 30 years of HIV, I think of a number of milestones, some of them good, some of them not so good. Certainly, in the very beginning, communities coming together and saying, “We're not going to allow this to happen to us. We are not going to go quietly into the night,” and building our own institutions, and caring for each other, and building support groups, and building hotlines, and saying that we are going to be there for our brothers. I think that that was important.

I think about the development with community pushing of the first treatments. I was among the first folks who were on AZT. When we were taking it, I don't know, I think five times a day. I remember the beepers. So that we knew that there was the possibility of treatment. The development of the first HIV test and the development of policies around HIV testing.

I think about some of the missteps that have prevented us from being further ahead from where we are today, things like the “No Promo Homo,” that undermined our ability to do effective prevention.

How do you see the next 30 years of this epidemic unfolding?

I think that we are in a period of time where we have the tools to end the AIDS epidemic in America today and across the globe. And that's critically important and it's exciting. With microbicides and with pre-exposure prophylaxis, and what we know about circumcision, and what we now know about treatment as prevention, our ability to do mapping and community viral load. We've had an explosion in biomedical prevention technology over the last two years.

The challenge for us in moving forward, to make sure that some folks are not having this conversation on the 60th anniversary of the AIDS epidemic, is to use those tools effectively, compassionately, and expeditiously. Now is the time. This is our deciding moment. We have what we need to put an end to this thing and we have a moral, financial obligation, health obligation to use those tools and to make the investment, now, in ending the AIDS epidemic. If we make that investment now, it will save lives, which is extremely important, of course. But it will also save us financially because every infection that we can prevent is a treatment dollar that we don't have to spend down the road. It is someone who contributes to our economy down the road. It is a family that is left intact down the road.

I used to say that I did not believe that I would live to see the end of this epidemic. I don't say that anymore. I believe that it is entirely possible that I will see the end of the epidemic, but we are at one of those deciding moments. Whether we end it now or not is totally up to us. And no one else will be held to blame but us.What would you say to people who did not live through the earliest part of the HIV/AIDS epidemic or to individuals who do not think they are affected by HIV and AIDS?When I talk to young people who certainly did not live through the trauma that we experienced in the early ‘80s, or people who are just now coming to the HIV/AIDS battle, or people who don't believe this is their problem, I say a few things:

1. Get informed. Knowledge is a powerful tool in the battle against HIV and AIDS. What you don't know can kill you.
2. Get tested. Knowing your HIV status is a personal responsibility. And knowing your partner's HIV status can save your life. And there's no reason not to know your HIV status in 2011. It has never been easier to get tested for HIV.
3. Seek treatment. AIDS is no longer the automatic death sentence that it once was. I know that. I'm a living example of what can happen when people with HIV have the love and support of family and friends that act as the proper health care. And as communities, we need to encourage folks to seek treatment when they're HIV positive.
4. Get involved. To fight stigma. To get engaged. To support AIDS organizations. To help raise awareness about AIDS in our communities.

We want to thank Phill for sharing his story with us. Visit our 30 Years of AIDS page to learn more about activities commemorating 30 years of responding to the HIV/AIDS epidemic. If you are interested in sharing your own story around 30 years of AIDS or reading more from others, please visit CDC’s Division of HIV/AIDS Prevention (DHAP) 30 Years of HIV/AIDS community.Exit Disclaimer To find information about HIV/AIDS services in your area, check out our HIV/AIDS Prevention and Service Provider Locator.