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].
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?
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. 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:
treatments have improved to the point that there are fewer side effects for most people; and
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.
Did you find that you had any myths or fears of the medical establishment when you first started taking the meds?
I did not have any fear in taking the meds. Again, it goes back to knowledge. For me, so much of it goes back to getting informed, and knowledge, and understanding science and treatment, and those kinds of issues. For me, it always goes back to that fundamental question: Do you want to live or not? "Are you done?" is my question. At some point, I will determine that I'm done. Probably not related to HIV, but at some point, I'll determine that I'm done. And that I'm ready. So then I'll make decisions that are consistent with that. Right now, I have decided that I'm not done. So then there are decisions that are associated with that. One of those decisions is the need to take antiretrovirals, and to deal with whatever side effects come with them.
Well, what do people say to you? Because we've heard a lot of people saying, "Well, Magic Johnson has the cure," or they're saying, "HIV drugs kill you." I mean, some of the best-selling books, supposedly, on Amazon are these crazy books like, HIV doesn't cause AIDS, or the cure for AIDS is you jump up and down or something. So there's all that stuff out there. And people hear about it and they go, "Well, there's easy stuff. I could just jump on a trampoline. It's not contagious. I just read a book, and this professor, he's a Ph.D., he said so." So, since all that's out there, how do we counter that? Or is there any attempt being made?
Well, first of all, we counter that by building a mass movement, where people can get real facts and information that can save their lives, wherever they turn. And I think that this false information, these myths and misinformation, are borne out of a vacuum of information. So we develop more information, and we develop better ways of disseminating that information. I think that's certainly a real part of it.
Why do people turn there so quickly? It's because people are so anxious to be in denial. Because the truth of the matter is, on the questions of accountability and responsibility, that can be hard. Being in denial makes it so much easier. Because if I'm in denial, I don't have to deal with my own responsibility, and my own culpability. If I'm in denial, I can say that so-and-so infected me, as opposed to saying I knew that I should have used a condom. So if I'm in denial, then I don't have to be actively engaged in any way.
So I think that that contributes to it. Because people don't want to think of AIDS, because of the stigma, as something that they can take ownership of. But, quite frankly, taking ownership of [it] is the most important thing that any of us can do, for ourselves or for any organization that we're working with.
Is that what you do? I mean, is that how you survive with HIV all these years?
"Right. I think that part of my survival is that, you know, I've embraced my reality."
Right. I think that part of my survival is that, you know, I've embraced my reality. HIV is a part of me. It's not all of me. It's not the completeness of my identity. But it's a part of me. And I'm not trying to run away with it. It's one of the reasons why I say that AIDS in America today is a black disease. It's not only a black disease, but it is also a black disease. And black Americans have to confront that. Nobody wants to say that. Nobody wants to own that. Nobody wants to acknowledge that. And that silence is killing us. We talk about, well, if you call it a "black disease," that's going to stigmatize folks, and that's going to stereotype folks. And the other folks are going to go away.
Well, hello. The other folks have already gone away. Whether we call the truth or not, everybody can read the numbers. So who are we fooling here? What we're doing in our interest, in the interest of trying to engage an outside community that has already expressed that they're not interested in us, we are denying the truth about an epidemic, and forfeiting our ability to mobilize ourselves.
So, in any problem, there is the "them" and there's the "us." Now, maybe we can deal with the "them." But definitely, we have to deal with the "us." That's the way I approach my personal disease, and that's the way I approach the disease in my community.
Do I want the president to do more? Yes, I want the president to do more. Do I want the Congress to do more? Yes, I want the Congress to do more. Do I want corporations to do more? Yes, I want corporations to do more. Do I want non-profits to do more? Yes, I want non-profits to do more. But it doesn't matter what the government does, what the non-profits do, what the corporations do, if in fact we are not prepared to save ourselves. So the first and the foremost thing that we have to do is to say this disease is killing us. It is our problem. It is about our people. And the only way it's going to ever end is if we come up with solutions and we implement those solutions.
At the International AIDS Conference you did a revolutionary thing -- you managed to bring together all these black leaders to talk about HIV and plan for the future. How did you do this?
How did we get black leaders to respond to the AIDS epidemic, and to come to the World AIDS Conference this year? The first step is, we asked them to come. Secondly, we pointed out to them that, quite frankly, AIDS in America today is a black disease. The numbers bear it out. Twenty-five years into the epidemic, African Americans, no matter how you look at it, bear the brunt of this epidemic -- whether we're talking about men or women or gay or straight or young or old or rich or poor, educated or not educated, African Americans are disproportionately impacted.
"The only way to stop the HIV/AIDS epidemic in America is to stop the epidemic in black America."
The third issue is that today, almost all of our leaders know someone who is impacted, or infected, by HIV and AIDS. So it really was not difficult to get them to come to the International Conference. I think that we're at a unique point in time, and we're at that place in time when clearly African Americans have to respond to this epidemic. The only way to stop the HIV/AIDS epidemic in America is to stop the epidemic in black America. At the same time, I think our leaders and our institutions understand that, and they're ready to respond to the HIV/AIDS epidemic.
So let's review some of the numbers. I mostly got this from the amazing report put out by the Black AIDS Institute. In it are astonishing numbers: blacks are seven times more likely to die from AIDS once diagnosed; seven out of 10 states with the highest per capita AIDS rates are in the Southeast; eight out of 10 blacks in the state epidemic are in the South; of all African Americans living with HIV/AIDS, the primary transmission category was sexual contact with other men; of all African-American women living with HIV, the primary category was high risk, heterosexual contact; 50 percent of all new diagnoses are among African Americans. What struck me when I was reading your report was some of the dates; it was a long time ago that we discovered this.
"Black women have always represented the majority of the HIV/AIDS cases among women, going back as far as 1984."
Right. Exactly. The truth of the matter is that African Americans have been disproportionately impacted since the beginning of the epidemic. The AIDS epidemic was never, ever, ever a gay disease. Outside of the United States, particularly in developing countries, it has always been primarily a heterosexual disease, and black folks have always been disproportionately impacted. For example, today black women represent nearly 70 percent of the new HIV/AIDS cases among women. But black women have always represented the majority of the HIV/AIDS cases among women, going back as far as 1984. In 1984, African Americans represented 25 percent of the AIDS cases. Today, African Americans represent roughly 50 percent of the estimated 1.2 million Americans living with HIV and AIDS.
So it's not a new story, but people are now beginning to be aware of it. The tragedy is, if we had sounded the alarm properly in 1984 and 1985 and 1986, we wouldn't have the epidemic that we have today. That is why we have the sense of urgency that we have today, [why] we are demanding that our institutions, that our government, that our clergy, that our media, that anyone anywhere that has any interest in the welfare and health of black Americans, has to be talking about HIV and AIDS.
Does this mean magazines like Essence are starting to cover issues about HIV, or telling stories of women living with HIV?
Well, you know, the one institution -- well, not the one; I shouldn't say that -- but one of the institutions that I am most proud of in black America is black media. Black media has responded in a huge way, not only in the numbers of stories that they are writing and reporting about HIV/AIDS in black America, but the diversity of the subjects and the quality of the stories. You know, we have a major commitment by Essence magazine, and by Ebony, and by Jet, and by Upscale magazine, and by Heart & Soul magazine. We have the National Newspaper Publishers Associations. Quite frankly, all 250 black newspapers in America have made a commitment to cover HIV and AIDS in a robust way. Black radio, through the American Urban Radio Networks: 650 black radio stations around the country have made a significant commitment to cover HIV and AIDS.
So that is one angle, kind of what we call the drumbeat, or raising awareness, or sounding the alarm, that's going on. But black civil rights organizations, like Rainbow Push and Reverend Jesse Jackson, are stepping to the plate again. Reverend Jesse Jackson has been there before. But also the Urban League and the National Association for the Advancement of Colored People, the NAACP ... Mr. Bruce Gordon and Julian Bond both have made a major commitment.
What we're calling on to happen is for there to be a national mass black mobilization to fight AIDS. We're actually calling on, quite frankly, the ending of the AIDS epidemic in black America over the next five years. Not eradicating the virus -- we know we're nowhere close to that -- but we can do a number of things. We can dramatically cut the infection rates in our communities. We can dramatically increase the number of people who know their HIV status. We can dramatically increase the number of people who are HIV positive [and] who are in appropriate care. We can dramatically reduce the number of people who are getting infected every day.
"Because the story of HIV/AIDS in America is primarily a story of a lack of leadership."
Of the 40,000 new HIV/AIDS cases in this country, nearly 22,000 of them are black. So by getting our churches involved, and getting our civil rights organizations, and our fraternities, and our sororities, and our elected officials all engaged ... Because the story of HIV/AIDS in America is primarily a story of a lack of leadership. So we're calling on our leaders to lead; we're demanding our leaders to lead. We're saying that, as far as we're concerned, you don't have a role to play unless you include in your role what you're going to do about fighting HIV and AIDS. We also plan to take that into the dialogue around the presidential elections in 2008.
Why did this happen? What are some of the reasons black are affected by HIV/AIDS?
I think that we are where we are in HIV/AIDS in black America today for a number of reasons. One is that the disease was initially mischaracterized. It was characterized initially as a white, gay, male disease. So if you were not white, if you were not gay, if you were not male, it was not your problem. And that was a huge problem.
In addition, by characterizing the disease as a gay disease, it was then stigmatized, stigmatized more than it needed to be in the beginning. Black communities were slow to respond to the disease. HIV and AIDS is a disease of opportunity. So, kind of the whole saying of "while you were sleeping ..." kind of literally and figuratively, the AIDS epidemic was taking a hold in our communities. Because we were slow to respond to the AIDS epidemic, we allowed the virus to get to the point where we had high prevalence and high incidence in our communities.
"We have global health disparities in America today. Fewer black people have health insurance and fewer black people have access to primary health care."
Finally, we have HIV/AIDS health. We have global health disparities in America today. Fewer black people have health insurance and fewer black people have access to primary health care. Fewer black people have access to health education. And that exacerbated the problem of fighting HIV and AIDS in our communities.
I was wondering if you could talk about why the African-American community might be more at risk. Could you talk a little bit about prisons and the lack of condoms in prisons, and the lack of intravenous drug equipment in prisons, but the definite availability of intravenous drugs in prisons?
|From "AIDS in Blackface -- 25 Years of an Epidemic"|
A publication from Black AIDS Institute (June 2006)
Click here to enlarge
Certainly. People talk a lot about the issue around prisons and the spread of HIV in black communities. I think we need to do a lot more work on that particular subject. I don't think we know as much as we need to know about what is the real impact of the mass incarceration of black men, in particular, on the spread of HIV and AIDS.
Certainly, we're concerned that a percentage of black men go into prisons HIV negative, and they come out HIV positive. We're concerned that a percentage of black men go into prisons HIV positive because they're vulnerable. And their vulnerability is actually what gets them into prison to begin with -- because they're poor and they may be ... you know, a huge percentage of our prisons are now the new holding places for people who have addictions, and for people who have mental illnesses. And they are vulnerable to exposure to HIV.
So we are concerned about what's going on in prisons, and the fact that we're not testing prisoners, we're not providing treatment for prisoners, and we're certainly not providing appropriate discharge planning for prisoners.
The other issues dealing with HIV and AIDS ... you know, the issue around drug use ... we know that the second highest mode of transmission in black America is drug use. And the fact that we still have ineffective policies around risk reduction for drug users is absolutely criminal. The fact that our federal government does not fund and pay for needle exchange programs is absolutely criminal. We think that contributes to the spread of HIV in black America.
The thing at the end of the day is that the strategy for ending the AIDS epidemic in black America is not so complicated. It really isn't. It involves,
Number one: Making sure that people are getting informed, that they have the information they need to protect themselves and to seek treatment and to deal with stigma issues.
Number two: Is urging people to get tested. Knowing your HIV status. Too many African Americans find out that they are HIV positive at late stage.
Number three: Making sure that people have access to treatment. AIDS is no longer the automatic death sentence that it once was.
Number four: Getting people involved in fighting the epidemic.
The truth of the matter is that we all know someone with HIV and AIDS, but you wouldn't know it by our involvement. So what we [at the Black AIDS Institute are] trying to do is, we're trying to get every single person, not only [those] who are African American, but those folks who are interested in issues of importance to African Americans, to get engaged on this issue.
How can they do that?
Well, they can get engaged in a number of ways. Number one, any organization that they're involved in, they should make sure that that organization has an AIDS plan, or AIDS program or AIDS policy. Every civil rights organization in America should have a strategic action plan. Every fraternity and every sorority in America should have an AIDS strategic action plan. Every church at every corner should have an AIDS strategic action plan. So they can make sure that's going on. They can get tested themselves. They can make sure that their partners get tested for HIV and AIDS.
"One of the things that's shocking is that 30 percent of black women who are newly infected with HIV and AIDS do not know the risk factors of their partners."
You gave some statistics earlier about women. Well, one of the things that's shocking is that 30 percent of black women who are newly infected with HIV and AIDS do not know the risk factors of their partners. They don't know how they got infected. So that is really just a part of simple (quite frankly) public health. We're failing on simple public health messages.
But doesn't it also have to do with sort of the lack of power that women have in sexual relationships in general in America, and in the world?
Certainly. The whole issue around gender disparities and certainly power dynamics based on gender is something that we should be concerned about. But what I'm talking about is that we have women who aren't even asking the question. We're not helping them to even ask the question. We have women who, even though they know about HIV and AIDS, aren't even thinking about the question. So we need to do a lot more work around basic education of both men and women around HIV and AIDS.
Isn't there another problem, which is, the city school systems are still teaching abstinence-only education?
"What we're doing, quite frankly, around AIDS education in our schools is nothing short of criminal, nothing short of genocide."
What we're doing, quite frankly, around AIDS education in our schools is nothing short of criminal, nothing short of genocide. It is absolutely an abomination that we would have AIDS programs in our schools that deny our children information that could save their lives. Of course, every parent and every adult supports abstinence being a part of the strategy. It should be the number one thing that we talk about to young people: sexual responsibility and accountability, and assessing when you're ready to be sexually active, and understanding the consequences of that should always be a part of that dialogue. Delayed sexual gratification should always be a part of that dialogue. But so should condom use, and how to protect yourself if you choose to engage in sexual encounters.
Clearly, if you abstain from sex, that's the best choice. But for those who make a different choice, death is too high a price to pay. And when we are in a war -- and when you look at the numbers that we're seeing around AIDS in black America, clearly, we are in a war -- we need to make sure that those folks who are in the front line of that war have every single weapon at their disposal so they will win that war.
So, just like we went into Iraq ill prepared, understaffed, ill equipped, that is the same strategy that we are using to fight HIV and AIDS by advocating abstinence-only measures -- abstinence-only measures that have been proven over and over and over and over again not to work. That's not to suggest that abstinence doesn't work. Clearly, for those who choose and can successfully maneuver abstinence, it clearly works, and we should advocate for that. But at the same time, we should make sure that there's a strategy. No matter what your choice is, there's someplace in that choice that allows you to have the tools and the information you need to protect yourself.
Are you excited, with the Democrats getting more power, that things might change?
"So, just like we went into Iraq ill prepared, understaffed, ill equipped, that is the same strategy that we are using to fight HIV and AIDS by advocating abstinence-only measures -- abstinence-only measures that have been proven over and over and over and over again not to work."
I'm not excited about the Democrats getting more power at all. The truth of the matter is, our government is not going to respond unless we make them respond. The Democrats set an agenda for the first 100 hours, and AIDS was not on that agenda. Hillary [Clinton] is in, and Barack [Obama] is in, and Joe Biden is in and Edwards is in. And they want Hillary to apologize for her vote on Iraq. They want to ask if Joe Biden is a racist because he says Barack is "clean." They want to know if Barack is black enough. They want to know if Edwards is really 50.
But nobody's asking the question: What is their position on HIV and AIDS? For us, that has to be a question. We cannot allow any conversation with any presidential candidate, no matter if there's a "D" behind their name or an "R" behind their name, where we don't ask the question: What is your agenda for ending AIDS in black America? Period. We have to have that conversation, and we have to make sure it's not only a part of the presidential discourse, which it has to be, but that it's also a part of the congressional discourse on what's happening in Congress, what's happening in the White House. It has to be a conversation that we're having. Because the message right now, whether or not the government is led by Democrats or Republicans, [is that] HIV and AIDS is on the back burner.
Why do you think that is? Why do you think that during the vice presidential debates there was one question asked that everybody was stumped on, about the leading cause of death in African-American women? And although there was a little bit of attention after that, it quickly disappeared.
Right. Well, you know, it's the Gwen Eiffel question, and it actually has become a huge phrase in the black community. The question that Gwen Eiffel asked about AIDS and African-American women. And neither vice presidential candidate could answer the question. I think that the truth of the matter is that leaders don't respond unless pressured to do so. So unless there's a penalty for not responding to this issue, they're not going to respond. So that means it's the responsibility of each and every one of us to step up to the plate, and to put the question on the table.
I wanted to go through a few other risk factors. In New York City, there was a recent public service campaign about homophobia in the African-American community that was kind of different. Are there things like -- I don't know if you know about it -- are there things like that going on elsewhere in the country?
Sure. Stigma plays a critical role in fighting HIV. I don't think that it plays as critical a role as some people would make it out to be. But it is an important issue that has to be addressed. And, yes, there are campaigns that are going on around the country. And quite frankly, the Black AIDS Institute just sponsored a national black women in AIDS conference, held in Los Angeles, and co-sponsored it with the National Council of Negro Women and the National Coalition of 100 Black Women. Recently a coalition of 54 different black women's organizations issued a call to action and a declaration of commitment to end the AIDS epidemic in black America. Each one of those includes the issue of addressing homophobia and stigma.
The issue around homophobia and stigma in our communities is yet another barrier that we can ill afford in fighting HIV and AIDS.
What's your opinion of the down low?
I think, quite frankly, the entire down low discussion was a deadly distraction in really addressing HIV and AIDS, because it created a false paradigm. On the one hand, it painted black men as amoral sexual predators that were out to get you. On the other hand, it painted black women as helpless victims and vectors of disease. Neither picture is particularly helpful.
It suggested that the down low phenomenon was a uniquely black phenomenon, which it isn't; that it was a new phenomenon, which it isn't. Are there black men who are sexually active with both men and women, and not disclosing that fact? Yes. Are there white men? Yes. Can we say Governor McGreevey? Can we say this recent minister in Colorado? So it's not a black phenomenon, and it's not a new phenomenon. The down low phenomenon is not the sole engine that's driving the AIDS epidemic among black women. So it was a distraction in that regard.
But can you agree that it did get a lot of women's attention? I mean, suddenly they go, "Oh, wait a minute," in a certain way. Everyone was talking about it.
I think that it did get a lot of women's attention, and everyone was talking about it. But sadly, the way the discussion was framed was not in a way that empowered black women to take care of themselves, and to protect themselves. Getting better at deciphering whether or not your man is having sex with other men is not helpful. If anything, what you need to get better at is making decisions around how you're going to protect yourself, no matter who your man is sleeping with.
"The issue around vulnerability for black women is an issue around infidelity."
The issue around vulnerability for black women is an issue around infidelity. It doesn't matter if your man is getting infected by a man or a woman -- or a needle, for that matter. What you need to know ... as a black woman, you need to know what are the risk factors of your partner, and you need to know how to protect yourself without regard to what your partner is doing.
So creating a paradigm where women are hiding behind the produce sections in their grocery stores [trying] to figure out if their partner is bisexual: that's stupid. When we can't even get black women to ask the question of, "What is your sexual history?" "We need to go get tested." "Use a condom." Those are the conversations we need to have, because those are the issues that black women are facing every single day, or every single night, in their bedrooms.
But isn't that like teaching women to role-play better, and to assert themselves, and not to be afraid of men?
Of course, that's a part of it. Of course, another part of it is teaching women that their lives are worth the effort, and making sure that black women understand their own power, and encouraging them to use that power.
Young gay men of color are also at big risk because of self-hatred. Many experience the same kind of lack of self worth that women do. Are there any programs trying to reach these young men?
There are a number of programs that are attempting to reach young, black, gay men. They are under-funded, and under-resourced, and they are few and far between. But there are some programs that are out there. Us Helping Us is a remarkable program, run by Dr. Ron Simmons in Washington, D.C., reaching out to young men who have sex with men. Also, there's Gay Men of African Descent, run by Tokes Osubu in New York City, which is a remarkable program. People of Color in Crisis in Brooklyn is another program that is addressing the needs of young, black, gay men. So there are a number of programs out there that are attempting to address that population. There needs to be more. There are not enough. And they need more resources to do the work that they need to do.
How come they're not getting the resources now?
I think that the resources that are going into black communities, whether we're talking about young gay men or whether we're talking about women, or whether we're talking about drug users or prisoners, are not sufficient. And they certainly are not in proportion to the numbers of people at risk for HIV and AIDS. Now, we're in an environment where we have an administration that has determined that it is better to cut the taxes for the very rich, as opposed to creating health programs for poor people. We have a situation where we're in a very, very, very expensive war, and so you have a reduction in taxes and an increase in expenses to fight this war. As a result, when it comes time to look for where you're going to save money, the people who end up paying the price for that are the most vulnerable among us.
Can people join the Black AIDS Institute? How do they become part of what you're doing?
You can get involved in what we're doing in so many ways. So much of what we do is in local communities and partnerships. So if you're part of any organization and you want to partner with the Black AIDS Institute, we're really, really excited to do that. You can sign up for our weekly e-newsletter; that goes out every Tuesday. You'll get the latest information on HIV and AIDS. You can visit us on the Web at www.blackaids.org. You can participate in any number of our various trainings or programs.
We have a program for college students called Life Aids. We have a program to train prevention workers and treatment educators called AAHU, the African American HIV University. We have a short film competition. If you're a filmmaker, we have a competition where you can submit a script about HIV and AIDS in black America and get your script funded. You can participate in our mobilization. Any of those ways. You can join in with the Black AIDS Institute on the level of the NAACP or the Urban League, or Rainbow Push, or 100 Black Women, Incorporated, or the National Council of Negro Women, or 100 Black Men ... which are partner organizations. So there are lots of ways to get involved with us.
So are you the first person -- the Black AIDS Institute -- to connect all the dots? Meaning, the media organizations and the Urban League and NAACP ... just connecting everybody together to fight HIV? Was nothing ever connected before?
As far as I know, no one had done that kind of comprehensive strategy that we're attempting to put together now. And we've been doing this since 1999, trying to put all the pieces and all the players together. Now we're at a point, in 2007, where it appears that we are poised to make that happen.
Is it the mobilization that's going to have its second meeting this year?
Right. We launched the mobilization at the World AIDS Conference in Toronto. Now, this year, what we're doing is we're having all of those organizations develop strategic action plans. Over the next year we'll be rolling out those strategic action plans.
So if people start seeing HIV being talked about and posters are being put up -- or programming -- it's really a result of the efforts of the Black AIDS Institute.
Well, we're actually in partnership with a number of other organizations. We're not doing this alone. And they are very critical partners. The Balm in Gilead, for example. The National Black Leadership Commission on AIDS, for example. The Magic Johnson Foundation. And those partners are part of the NBAM program. And each of us has our strengths: the Balm in Gilead has a strong history of working with black churches. The National Black Commission on AIDS has a strong history of working with elected officials. So we bring each of our strengths to the table.
That's the other strategy; that we have to stop the divisiveness, the turf stuff. We need to break through all of that. We need to get real about this epidemic. We can't blame other people for not responding to this epidemic unless and until we are developing effective strategies among ourselves.
Okay. Well, thank you very much.
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