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This Month in HIV: A Podcast of Critical News in HIV
  

This Month in HIV: Stopping HIV/AIDS in the Black Community

February 2007

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.

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Phill Wilson, Founder and Director of Black AIDS Institute and 26-Year Survivor of HIV

This is Bonnie Goldman, and I'm here with Phill Wilson, executive director and founder of the Black AIDS Institute. Even though African Americans have been disproportionately affected by HIV for many years, much of the black community seems not to have noticed. For years, Phill has worked tirelessly to put HIV/AIDS on the agenda in the black community. During the summer of 2006, he did something extraordinary. At the International AIDS Conference in Toronto, he gathered together some of black America's most prominent leaders -- including Julian Bond, chair of the NAACP [National Association for the Advancement of Colored People], and U.S. Congresswoman Maxine Waters -- to announce the creation of what they called a Marshall Plan to reverse the high rates of HIV infection among blacks by 2011.

What makes Phill's efforts all the more inspiring is that he is HIV positive himself -- in fact, he's been living with HIV for 26 years. In addition to fighting the virus, he's been fighting for the rights of HIV-positive people for almost as long as the epidemic itself: He was the AIDS Coordinator for the City of Los Angeles from 1990 to 1993, and was the Director of Policy and Planning at AIDS Project Los Angeles from 1993 to 1996. He's also coordinated the International Community Treatment and Science Workshop at the last four International AIDS Conferences. He's written articles that have appeared in the New York Times, Los Angeles Times, Essence, Ebony, and many other publications. Black Entertainment Television named him one of 2005's "Black History Makers in the Making." And we're honored to have him here for The Body's "This Month in HIV" podcast.

Phill Wilson, thank you so much for taking the time to talk with us. Tell me, how do you manage to still have such passion and energy for AIDS activism after all these years?

Well, Bonnie, thanks for having me on, first of all.

Well, the passion is, where am I going to go? I'm doing what I'm supposed to be doing. Whether I am working on AIDS or not, the virus is going to go with me wherever I am. So it's not like I have the option of escaping it. The truth of the matter is, I don't have the same energy that I had. I'm older than I was. I'm more progressed in my disease than I was. I don't have the same energy. And that speaks to my sense of urgency. All of us, I think, who are living with HIV are waiting for the other shoe to drop. I've been very, very fortunate, in that I've lived with the disease for 26 years. Over that time, although I've had a few serious bouts of illness, I've been relatively healthy. I am lucky because I have the help and love and support of family and friends. I have the best health care in the entire world. I have the best health care, in part, because I know all of the people who are doing AIDS care in the world. But, you know, the other side of that is, I am the exception that proves the rule. Most people who look like me don't have access to the same kind of health care I have access to, and the same kind of support that I have. So, since I know why I have been able to survive, that certainly drives me to expand that accessibility for others.

What are some of the secrets to survival? To finding good health care, for instance?

"For far too many people, they don't make that as an explicit decision that 'I'm going to live, so I'm going to do what it takes so that I can live.'"

Well, you know, certainly, to finding good health care: the first secret is early detection, finding out that you need health care. Secondly, it's being an advocate for yourself. Today, as the result of the Ryan White CARE Act and other programs, it is easier to get health care than it was -- although it's increasingly becoming more difficult again. But, [it's important] to be a good advocate for yourself. To build a support network around you to help you to live with the disease. To make the decision that you are going to live. For far too many people, they don't make that as an explicit decision that "I'm going to live, so I'm going to do what it takes so that I can live."

Why do you think that is?

I think that there are a number of reasons why people are unable to make that decision. Probably chief among them is not believing that their lives are worth saving, which is a real tragedy; not knowing that HIV/AIDS is not a death sentence -- so, entering in believing that HIV/AIDS is a death sentence; not having the skills to find the resources they need to take care of themselves, or to provide support.

If someone finds out that they're HIV positive today, and they have no insurance, how do they connect with care?

Well, the first thing is, in every state (although in some states, there are waiting lists now) and in most cities, there are programs to get people into care, either for free or reduced rates. The Ryan White CARE Act was set up to provide care for people living with HIV and AIDS who could not normally afford it. But the first thing they need to do is to find themselves a doctor. Once they find a doctor -- and, quite frankly, they can go to www.blackaids.org, and there's a doctor locator there; they can go to any number of places to find a doctor. Once you have a doctor, that doctor can help you find the resources you need to get you into proper care.

But aren't there doctors who only take people who are insured?

There certainly are doctors who only take people who are insured, but even those doctors can refer you to a doctor who has a more appropriate practice for you.

So is it true that you can always get help if you need it? If you try long enough and hard enough?

I don't know if it's true that you can always get help. I don't think that I would make that statement. But I would say that in most cases -- in some cases, it's more difficult than it is in other cases -- but in most cases, help can be found.

What are some good states?

I would say, well, rapidly, the notion of "good" is becoming a relative term, but California, for example, is a good state right now for getting into health care, HIV health care. Illinois is still a good state, although we're starting to see some problems in Illinois. New York is a good state. Washington is a good state. Maryland is a good state.

What are some really bad states for living with HIV?

Tennessee is becoming increasingly a bad state. Mississippi is a bad state. The Carolinas are bad states. Louisiana, for other reasons, is a bad state.

And when you say bad states, what do you mean?

We mean states where it is more difficult to seek care and treatment. Primarily it means states that are making little or no investment out of state dollars for HIV/AIDS care.

Wasn't it, I think, in South Carolina, that four people died on a waiting list for HIV medications?

Yes. As they were waiting on a waiting list, exactly.

So they were waiting. And I think currently there are more than 300 people on a waiting list for HIV medications in South Carolina.

Exactly. You know, and in those states that have a waiting list, what we see is that, in the states that have the biggest waiting lists, the state is not contributing a dime to HIV care in that state. The states that have the best care, at least the state is making some sort of contribution. So what can people do? They can put pressure on their state legislators to respond to this epidemic, or their governors.

Anyone can just write to their state legislator?

"I think that people underestimate their power, particularly in communicating, with their legislator."

You can write to your state legislator. You can write to your governor. You can write to your senator. You can write to your congressperson. It's very, very easy. Your letters are, in fact, read, and certainly counted. I think that people underestimate their power, particularly in communicating, with their legislator. You can e-mail your elected officials, as well. Those are also read and counted.

Have you discovered yourself that it works?

Yes, absolutely. A big part of what we do is communicating with leaders, elected and otherwise. I found that absolutely, that communicating and writing letters and sending e-mails makes, quite frankly, all the difference in the world.

Let's go back to your health a little bit. What treatments, can you tell me, have you been through, or are you on now?

Sure. We can do both, if you like. We can talk about my treatment history. Because I've been living with HIV for nearly 26 years now, of course, I've been on AZT [Retrovir, zidovudine].

Monotherapy?

I was among the first cohort of people who were on AZT. I think I went from AZT to 3TC [Epivir, lamivudine], and then I went from AZT to 3TC to 3TC and d4T [Zerit, stavudine]. And then I went to AZT, d4T, and saquinavir [Invirase].

How did you make these decisions? Was it first your doctor just telling you? Or did you hear rumors on the street about this or that?

Well, my first decision to go on AZT was kind of ... You know, I was a person who was living with AIDS, and they came out with a drug. All of our friends were dying, and so everybody took the drug. This kind of was what happened. Then what happened is that, AZT didn't work so well. So the idea came up: We'll try two drugs. And that became the AZT and the 3TC. Then eventually the protease inhibitors came out and for me that's where the saquinavir was added. The best practices of HIV care are multi-drug combinations.

Did you have a lot of side effects?

I had a lot of side effects when I was on AZT. I had a medium amount of side effects when I was on AZT, saquinavir and d4T. I am now on -- what am I on now? I am now on ... I'm not going to remember. I am on Reyataz [atazanavir]; Reyataz -- what are the other two drugs?

Are you taking it boosted?

Yeah.

So, with Norvir [ritonavir]?

Yeah, I'm taking Reyataz with Norvir and the third drug would be Truvada [tenofovir/FTC]. So I'm taking Truvada, Reyataz and Norvir right now.

A lot of people in our audience struggle with side effects from both HIV meds and HIV. Sometimes they just can't do it. Some of the side effects are really awful. Some of them are just a pain in the butt.

Literally.

Literally. Diarrhea. You must have gone through a whole bunch of them, through the years. How did you just keep on taking it? And keep on believing it? And dealing with whatever happened?

Well, part of it is knowledge. The fact [is] that I never take a drug unless I know what the possible side effects are. It's amazing, when you know [the side effects of a particular drug], and you know how long they tend to last, and you know what to expect, and you know how to avoid them, and you know how to take care of them, and what have you. It makes the side effects less scary, and less daunting when they begin to happen.

"One of the fundamental, first questions you have to ask is, do you want to live?"

So I think that knowledge is critically important. I think that kind of asking yourself: really, what is the alternative? Which is why, early on, I said one of the fundamental, first questions you have to ask is, do you want to live? And you answer that question, and you move on, and you don't look back. So if the answer is, "Yes," [I want to live] then you have a series of other choices or decisions that you then make.

If the answer is, "No," [I don't want to live] then there's a different list of choices and decisions you make. But I think that it's important for you at all times to be clear about that fundamental question. So, if I've made the decision, "Yes," and then the price I have to pay for living is that there are going to be side effects, then that's the price I have to pay for the decision I've made.

But whatever decision you make, there's a price to pay. So the price to pay possibly for avoiding the side effects may be an early death. Is that an appropriate price to pay? Maybe it is. Maybe it isn't. But that certainly, I think, is extremely helpful in dealing with side effects -- and that is, making some of those decisions in advance.

So when you read the list of side effects, it doesn't scare you? You don't think, "Oh, my God," and you start having all those side effects?

No. The side effects of HIV/AIDS meds don't affect me. What makes me laugh out loud is when people talk about the side effects for HIV meds, and I wonder, has anyone kind of looked at, for example, the side effects of Viagra and Cialis? I mean, you watch these commercials on television. The side effects of the nail fungus topical things that you take. They talk about liver failure, ulcers, and all these horrible things so that you can wear sandals!

So, no. The side effects don't frighten me at all. They are manageable. They're not for everyone. The good news is that:

  1. treatments have improved to the point that there are fewer side effects for most people; and

  2. that there's a greater variety of choices so that you can choose the regimen that has the least side effects, or the side effects that you are most comfortable in dealing with.
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Copyright © 2007 Body Health Resources Corporation. All rights reserved. Podcast disclaimer.

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.


  

This article was provided by TheBody.com. It is a part of the publication This Month in HIV.
 

Reader Comments:

Comment by: Edna Terry (Mastic, LI, NY) Wed., Nov. 25, 2009 at 10:42 am EST
Yes, the side effects are horrible. My sister a vibrant individual reduced to memory loss at age 40 years old. The doctors give very little and case management (over loaded) can not service individuals properly. Then who do we talk to?
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