The Age of Aids [home page]

interview: pernessa seele

[photo of Pernessa Seele]

Working as an immunologist at Brooklyn's Interfaith Medical Center and Harlem Hospital during the late 1980s, Pernessa Seele was "shocked and disappointed" at Black churches' silence in the face of the AIDS epidemic among New York's African American community. "At the time there were over 350 churches in Harlem, and there was not one pastor -- no one was coming to the bedsides of these people, and they were hungry for support; they were hungry for prayers," she recalls. Seele had the idea and initiative to create the Harlem Week of Prayer for the Healing of AIDS, which 16 years later, has become the Black Church Week of Prayer for the Healing of AIDS and now involves 15,000 churches in the U.S. and abroad. She also founded The Balm in Gilead to support black churches engaged in the fight. "We know that the African American church is the root of our community," she explains. "It is not real until the pulpit speaks on it. That's why it was important that The Balm in Gilead began to get pulpits, the African American church, to say, number one, 'We have a crisis.'" Here, Seele talks about the need to develop prevention and education strategies appropriate for the audience you're trying to reach, and tells FRONTLINE that "inherent racism" has allowed HIV/AIDS to ravage Africans and African Americans. "When we look at the epidemic worldwide, the epidemic is raging in black communities worldwide," she says. "It is very clear to me that no one's coming to save us. Unfortunately we have not seen the response of the black community in crisis mode." This is the edited transcript of an interview conducted on March 6, 2005.

When did you first encounter AIDS?

I first encountered AIDS somewhere around 1984, '85. My church was the Brooklyn Truth Center in Brooklyn back then, and my choir director had a strange disease, and later we found out it was AIDS. One Thursday he did not show up for choir rehearsal, and some members of the church went to his home in Harlem and found him. He'd actually died in his home by himself. That was my first encounter. I didn't know what it was, but that was my first encounter, in my church.

Why do you think he didn't tell anybody that he was ill?

Back in the early '80s, I don't think that even he was very familiar with what was happening. I was very close to him, and we would ride to church every Sunday morning, and so I knew him when he was not sick. As he progressed in his disease, it was very obvious that there was something going on that he wasn't quite aware of either.

It was a very strange time in the African American community, particularly in the African American gay community, where so many gay people were in fact in churches -- in the choir, the music director, in the pews -- and no one really knew what it was. Of course no one was talking about it, so I didn't get a sense that he knew much about it, and I certainly didn't know anything about it. There just wasn't that information.

So how do you then come from that position of not knowing anything in the '80s to the '90s, where you're working as an immunologist in New York?

I came to New York as an immunologist, and I worked for Rockefeller University, and then I said, "I want to go and do something different." As the epidemic got a name -- there was no longer a GRID [gay-related immunodeficiency syndrome]; it was actually AIDS -- there became more of [an] organized response, if you will. I was one of the first AIDS educators for New York City, and that took me to a job out in Interfaith Medical Center in Brooklyn and then to Harlem Hospital. When I got to Harlem Hospital, of course, my life completely, completely changed into what it is now. ...

[What happened?]

It was back in 1989 when I started at Harlem Hospital, and three days into that job I was completely burnt out, because it was my job to go up and address the needs of the people in the hospital who were sick with HIV. ... I was just shocked and disappointed in the lack of response of the church. At that time there were over 350 churches in Harlem, and there was not one pastor -- no one was coming to the bedsides of these people, and they were hungry for support; they were hungry for prayers. I also felt that I needed prayer, having to go up on the wards every day. ...

One in every four black men living in Harlem is HIV positive. One in four living in Johannesburg is HIV positive. You don't have to take a 17-hour flight to fight HIV.

I really didn't see any spiritual support at all, and I got an idea. That idea was a Harlem Week of Prayer for the Healing of AIDS. The purpose of it was to mobilize the total faith community -- the churches, the mosques, the Ethiopian Hebrews, the whole faith community -- to address HIV and AIDS. Sixteen years later we know this as the Black Church Week of Prayer for the Healing of AIDS, and those little 50 churches and mosques that came together in October of 1989, we are now about 15,000 across the United States and now working in five African countries.

You were saying that there was nobody in the church coming to be supportive and to help, but just generally within the African American community, what was happening around the issue of AIDS?

Back then, what was happening was a lot of silence, a lot of "What is this?" We just didn't know what it was, and we had been receiving a lot of mixed messages by then, because when the epidemic started, it started as a gay white disease -- a gay white disease, period. It was never going to filtrate the black community. Of course, really, we were really quite happy with that, because the African Americans, we get every kind of possible disease that walks, so we were like: "Thank you, Jesus. This is not our disease."

Then it became a gay disease, both black, white, blue and green, everybody, a gay disease. And those who were addicted to drugs would get this disease. So at that point in time it became a "those people" disease. If you were gay, you had HIV; if you were on drugs, you would have HIV. We had this myth that "Well, I'm not gay; I'm not on drugs; I don't have to worry about that."

I remember there were several articles that the AIDS epidemic would never reach the heterosexual community. Well, someone needs to sue those people today, because when that was on the front page of major, major magazines in this country, it gave all the heterosexuals, black and white, the freedom that this was never going to be our problem. Well, we did not know that HIV the virus was actually taking a serious hold in our community, so as we were sitting back, kind of saying, "Yeah, yeah, yeah, it's not our disease," the virus was like, "Uh-huh, just keep them busy while I really get my foot in this epidemic."

Do you think that the fact that "it was not our disease" initially was the only reason why the African American community had problems being open and discussing it?

I think that was a big problem, because again, let me be very clear: Public health officials were saying this was a gay disease and this was a disease of those who were addicted. This was coming from public health authorities. ...

Then, when it became our disease, that message, that public health message, had already taken a real serious hold on our consciousness. Twenty-two years later into this epidemic, the black community here in the United States, we are still stuck. One of our biggest barriers to addressing HIV is this notion, is this myth, that homosexuality causes HIV. We have not been able to break that myth that was given to us by public health officials, and I think that's very important for the history.

Was the myth that it's a gay disease and therefore not related to us the only myth that was going around with the disease?

Oh, absolutely not. [That] it was a homosexual disease was a myth. There was the disease caused by mosquitoes; the green monkey disease in Africa. If you were from Haiti, you had it; if you were from South Carolina, you probably didn't have it. I mean, it was just a barrage of myths, and that's what happens when you don't have factual information. If you don't have information, there's a myth. People just gather information. ...

How do you then come up with an effective strategy to fight the disease when you've got all these myths going round? What do you do? Do you address them? Do you ignore them? Do you make them part of the educational strategy?

First of all you develop strategies, but you develop strategies within the context of the culture of the people, which is why at The Balm In Gilead our mission is to build the capacity of the faith community, because we know that the African American church is the root of our community. We believe in the voice of the pulpit. It is not real until the pulpit speaks on it. That's why it was important that The Balm In Gilead began to get pulpits, the African American church, to say, number one, "We have a crisis." People began to take the HIV/AIDS crisis seriously when the church began to speak out that there in fact was an epidemic. That's the historical role of our churches in the United States. It's the place where we galvanize around political issues, social issues. It is where we establish social norms is within our church.

We have to develop strategies in the context of the people. What worked for the gay white community -- people try to use those same strategies in the African American community, they didn't work. There's still some places they're still trying to utilize those same methods. They don't work. ...

Our strategy is that we have to understand the realities of the epidemic in the black community. It's not one-dimensional; it's not monolithic. You look at the number of African American women who are living with HIV. Most of them, the majority of them, gained the epidemic from heterosexual relationships. That's a far cry from a gay white man's disease. When you look at our brothers, both gay and straight, the epidemic has just -- it's in every part of our community.

Our process must be holistic. It must be holistic. We must address abstinence-only programs. We must do condom programs. We must do needle-exchange programs. We must do the whole thing, because our house is on fire. We look at one in four African American men living in Harlem and compare that to one in four Africans living in Johannesburg, it's the same thing. We have to have all things on deck. Everything must be utilized to fight this epidemic.

This program looks at what was happening with the virus in the '90s. I mean, it's one in four now. Back then it was a lot less prominent. How do you respond to that?

One of the most disturbing historical perspectives of HIV in the African American community, I believe, is that when we go back to 1991, I remember when the U.S. Centers for Disease Control predicted that the epidemic would be out of control by when we got to 2000. They predicted it. They said by the time we get to the year 2000, one in every 50 black men will be HIV positive, and yet there was no real serious intervention from the public health perspective to stop the epidemiological track of this disease. ...

Something's wrong with that. Public health law says that resources follow the epidemic. Well, we have never seen that here in the United States. So I think that that was a part of the disaster. A part of how we got to this place is there was a prediction by the public health experts that we would get here, and nothing was done to prevent it.

Can I ask you to speculate why nothing was done?

I could speculate. You know, in these United States, we have a history of African Americans, we do not get adequate health care. We have volumes and volumes of history regarding scenarios like Tuskegee Institute, where there was in fact a cure for syphilis, but the African American men were not given penicillin. The world knows that about Tuskegee, and there are many, many other stories just like Tuskegee. ...

I'm going to press you on giving me a reason why.

It's inherent racism. It's inherent racism. [In] these United States, racism is just normal here. It's just normal. Let's just sum it up. Let's just sum it up that it's racism. I think health care in America regarding black folks is the fundamentals of its racism. Today when you look at how ... black people are treated when they go into the hospitals, what kind of drugs they get, what kind of treatment they get -- black people are still getting more amputations because of diabetes than anybody else. I mean, we can just go on. It's just racism. You want to press me some more? What else can I say?

... How do we go then from what happened in the '90s to where we are in 2000?

The epidemic now is completely out of control. The opportunity to stop the spread of HIV in the United States was missed several times. It was missed at the beginning, when it was just a gay white disease. It was missed when it was said that this would never be a heterosexual disease. It was missed when it was predicted that it would be raging in the African American community by 2000 and no interventions would take place. So now here we are in the epidemic that's just raging.

For me, my mantra is that it's clear for 20 years of addressing this HIV epidemic, no one's coming to save us. When we look at the epidemic worldwide, the epidemic is raging in black communities worldwide. It is very clear to me that no one's coming to save us. Unfortunately we have not seen the response of the black community in crisis mode. From the community, we have those of us are working every day on the front line. We only have three national black organizations addressing HIV/AIDS in the United States. In many of our communities, African American AIDS service organizations are the first to close because of lack of funding.

We are still having to rely on someone else's dollar to fight HIV, and I say that we, the African Americans, we must begin to mobilize ourselves, to address this crisis in our community. ... We must make it a priority to get our own dollars to our own service programs that's going to provide the services we need to care for the sick. We need a real resource that's going to provide resources for groups that can provide advocacy, to make sure that our folks get proper health care and proper treatment. ...

Let's talk about a specific thing that happened under President Clinton's watch, which was the opportunity to use federal funds for needle exchanges. Clinton backed out and didn't do it. Can you give me an opinion from your immunologist's point of view?

... HIV has never been addressed in the community from a scientific point of view. It's always been addressed from a political point of view. The research showed that if you give those who are on drugs clean needles that it's likely that they will not contract HIV. Research showed that giving a person a clean needle who was on drugs did not support their drug habit, their drug addiction. The research showed it, but yet the response of government was not to support needle exchange.

Presently, research shows that if you use condoms 99 percent of the time, it is most likely that you will not become infected. If you have sex with someone with HIV, if you use a condom, it is highly likely that you will not become infected. However, condom programs, prevention education programs using condoms are taboo, so we now have this abstinence-only. Abstinence-only programs are getting funded, whereas holistic programs where you have abstinence, condoms, needle exchange -- our house is on fire. Abstinence programs are very, very essential, very, very important in our community, but we also have to save the lives of those who are having sex. We cannot be one-dimensional. The research shows that. But yet the response is not scientific-based; it's political-based, which is why I go back to the fact that the African Americans, we must mobilize ourselves to address HIV, because HIV in our community, it is not political; it is a crisis of death.

If I could take you back to the setting up of your organization The Balm In Gilead. Tell me about what was so different about it, what made it so successful and so special.

As I said, the African American church is so important in terms of its role in addressing HIV, and our approach was a Week of Prayer for the Healing of AIDS. I remember how folks were like: "This is not going to work. We have been trying to get these churches to go on board, but you think you will get [them], you go right ahead." They were surprised when it worked, and the reason why a week of prayer worked was because it allowed the church to find its own space, its own comfortable place.

The church was already being devastated by HIV. I can remember a pastor saying that by 1989, 40 men had already died in his church from HIV, so it wasn't like it was new. Churches were being devastated, but they did not know how. It wasn't they didn't know; they didn't want to respond. They did not know how to respond to this epidemic that was so wrapped up in sexuality, so wrapped up in drug addiction and all those things that we just don't talk about in church. So a Week of Prayer for the Healing of AIDS gave church folks, it gave pastors a space and opportunity to come in and find a comfortable space to address HIV. I think that was the success of it.

The Balm In Gilead then came out of this week of prayer because the response was so great that we then had to create an organization that would continue to support that pastor as he wanted more information. When he said prayer from the pulpit, people said: "Oh, hallelujah, I can now tell my pastor that I have HIV. I can now tell my pastor that my child died. I can tell my pastor that my granddaughter has HIV." ...

So The Balm In Gilead, our mission is to build the capacity of the church to address HIV. We have those ministers who run an HIV/AIDS ministry, and today, pastors who began 10 years ago, 16 years ago, they now have HIV-testing clinics right there alongside their church. They now have a comprehensive case management program supporting people living with HIV. A church down in Houston, they have even built a school for children whose parents have got HIV, a black church in Houston. So yeah, the response of the black church today is great. ... We still have more churches that we have to get [to] become engaged, but we also have model churches today that are really involved and addressing HIV. ...

We have to continue to lift up those model churches, those churches who are in the front line of AIDS every day, who have opened their doors to whosoever could come into that church any day of the week and get supportive services; churches who are involved in mutual exchange programs; churches who are doing abstinence-only programs; churches who are giving out condom programs. We have to uplift those faith communities who are involved with all types of HIV prevention education and services programs. ...

[How did the development of triple cocktail treatment affect the African American community and how they dealt with AIDS?]

One of the challenges that the African American community has to face around treatment is the historical context in which we deal with health care in this country. We do not trust treatment. We really don't believe in a lot of drugs. That's why you don't see a lot of African Americans in clinical trials, because we're always believing that other folks are trying to study us and other folks is trying to kill us. I mean, it's a fundamental belief that somebody is trying to kill us. We are a very paranoid community, and rightfully so. We have reasons to be paranoid.

I don't think that even when our access has been appropriate, we have not been able to become fully engaged with opportunities with treatment because of our historical belief that "I'm just not going to take these drugs." We are a people that really would go and do herbs before we believe that this drug is going to really save us. The historical context of African Americans and health care continues to be somewhat of a barrier in how we adhere to treatment around HIV. I think it's getting better.

I think also that's why we have to continue to build up our community support programs. We have to continue to support, continue to build up community service delivery programs, because if I come and I have an African American nurse in my church telling me it's OK to take this drug, that means so much more because I trust her. She looks like me. I feel she believes in me. I believe she really has my interests, whereas I don't necessarily believe the folks over there at the clinic. That's why we have to continue to support our own structures, to educate our own people. It's very critical.

Now don't misunderstand. I am not saying that we should not support clinics [of] the people who don't look like us. I am not saying that at all, because in this country, where we have so few black doctors and black nurses, we have to have doctors and nurses of every race treating us. But we must also [have] a mandate [that] those folks who are not of African origin become culturally sensitive to our issues. That is essential. That is very, very important.

Is that what traditionally has meant [by the fact] that the epidemic has been able to cut a swath throughout the community in the '90s? And is that why these people need to take a look?

Access to treatment is definitely an issue, like throughout the '80s, throughout the '90s, right up to today, so many people still don't have access to treatment right here in these United States, so I think that's very, very important.

For those who are delivering the treatment, it's very important that they are culturally sensitive. It's not OK -- "I'm not going to give you the best drug because the best drug may mean that you take it three times a day, and I know you're not going to take it three times a day, so I'm going to give you this subgroup of drugs because you probably only will take it once a day." Well, that's not necessarily true. Just because I'm a black person doesn't mean that I shouldn't get the best drug available to me. We have those kinds of issues going on in our community just because you think I'm not going to be able to take my medication.

When people generally use the term "two worlds of AIDS," they talk about a world of AIDS where people have access to care if you live in the West, and if you live in Africa, you don't have access to care. Now you've just told me about not having access to care here in the States.

Absolutely. In many of my communities, particularly down South -- Alabama, Mississippi, Georgia, Louisiana, Arkansas -- those people down there do not have adequate programs where everybody with HIV can get treatment. It's just not there. ...

I keep telling folks here in the United States, they always want to go with me to Africa to fight HIV. We don't have to go to Africa to fight HIV. We can fight HIV right here in our communities, where the numbers are just as great. Once again, one in every four black men living in Harlem is HIV positive. One in four living in Johannesburg is HIV positive. You don't have to take a 17-hour flight to fight HIV. ...

If you had to assign a character to AIDS, what would it be?

I would say that HIV is very charming. I would say it's very, very charming. It's alluring. HIV has spread to this outrageous crisis that we have in our community because it's charming. People don't stop having sex because one has HIV. People have not stopped doing drugs and sharing needles because HIV is out of control. It's just something that's so charming about it that it's not a barrier. It's like a "Come and get me." ...

I would also compare HIV to a butterfly. I know many people whose lives were really going down the tube until they became HIV positive, and once they became HIV positive, you know what? They turned their whole life around. They were a mess, and the fact that they became HIV positive gave them something to hope for. They picked themselves up; they cleaned themselves off; they stopped doing drugs. You would never know they've been living with HIV now for 10, 15 years. They're in our churches. They are responsible professionals. But before HIV they were some awful dingy people. So in some perspectives, HIV has been a blessing to some folks whose lives have turned around. ...

[What was the impact of Magic Johnson's announcement that he was HIV positive?]

When Magic Johnson made the announcement he was HIV positive, it had a major impact in our community, and it had a major impact with young people who are now 25. As a matter of fact, I was just speaking with someone in the store just last week, and this is a brother who's working, and he was behind the counter, and he's now 25 years old. He was saying, "I remember, I think I was like 15 when Magic Johnson announced, and I have used a condom ever since."

It was so impactful for him and his generation. But he's now 25. So the impact of Magic's announcement is still lingering somewhere in many of those folks who were children and teenagers. But for the teenager today, the impact of Magic's announcement has no effect on them today.

How do we reach them?

We reach them through their culture. We reach them through their music. We reach them through their videos. We reach them through where they are. For many of us who are not a part of the hip hop generation, we're like: "Oh God, what are they saying? Oh my goodness." We cannot turn our backs because we don't understand their music. My mother didn't understand Aretha Franklin; my mother didn't understand Michael Jackson. She didn't understand Diana Ross, and I certainly don't understand Lil' Kim. But that's OK. I must bring people into my organization that understand Lil' Kim, that understand J. Lo, that understand these rap artists, because this is the culture of our kids, and we must save them. ...

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posted may 30, 2006

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