Of the more than 1 million people in the U.S. infected with HIV, nearly half are black men, women and children — even though blacks make up about 13 percent of the population. AIDS is the primary killer of African-Americans ages 19 to 44, and the mortality rate is 10 times higher for black Americans than for whites.
A new Frontline documentary, Endgame: AIDS in Black America, explores why the HIV epidemic is so much more prevalent in the African-American community than among whites. The film is produced, written and directed by Renata Simone, whose series The Age of AIDS appeared on Frontline in 2006.
On Thursday's Fresh Air, Simone is joined by Robert Fullilove, a professor of clinical sociomedical studies at Columbia University's Mailman School of Public Health, and chairman of the HIV/AIDS advisory committee at the Centers for Disease Control and Prevention.
"When I started doing this work in 1986, roughly 20 percent of all of the people in the United States who were living with AIDS were African-American," Fullilove tells Fresh Air's Terry Gross. "The most recent statistics from the Centers for Disease Control indicate that 45 percent of all the new cases of HIV infection are amongst African-Americans. ... If we continue on the current trend, in the year 2015, especially in the South, it will probably be the case that 5 to 6 percent of all African-American adults who are sexually active will be infected with the virus."
Endgame explores how politics, social factors and cultural factors allowed the AIDS epidemic to spread rapidly in the African-American community over the past three decades. The film — shot in churches, harm-reduction clinics, prisons, nightclubs and high school classrooms — tells personal stories from children who were born with the virus, public health officials and educators who run HIV clinics, and clergy members around the country, many of whom have been divided on their response to the epidemic.
The film also explores how the war on drugs in the 1980s and 1990s affected the spread of HIV in communities where large percentages of African-American men were incarcerated.
"A large number of marriageable men were taken out of the community," Fullilove says. "When you have this kind of population imbalance, many of the rules that govern mating behavior in the community are simply going to go out the window. The competition for a man becomes so extreme ... all of the prevention measures [like condom usage] that we've been trying to create over the last 30 years go out the window."
Only 3 percent of the federal domestic dollars spent on HIV go toward prevention, according to Simone.
"We still have a long way to go in policy terms," she says. "What I tried to do in the film is help a general audience see that this is an epidemic not just of drug users and people who are sex workers. This is an epidemic that affects people who make you think, 'But for the grace of God, there go I.' There's a 64-year-old grandmother, there's a woman who works in a restaurant, there's Magic Johnson. ... Right now, today in 2012, this is an epidemic of people that we recognize and, if our lives were any different, we could be."
Interview Highlights — Robert Fullilove
On how AIDS, once called Gay-Related Immune Deficiency (GRID), was presented in the media during the early days of the epidemic
"The name itself gave rise to the notion that this was something that was affecting Americans from a particular community, identified by their sexual preference, separate and apart from folk in black communities like Harlem or Watts were experiencing themselves. The presentation in the press was of a white epidemic."
On secrets in the African-American community
"We were so much afraid of what it meant to have what was happening in the slave quarters revealed to those who were empowered to direct every aspect of our lives. So we became secretive, because if there was dissension, if there was anger, the last thing you wanted to do was to make it public. To make it public was to be punished. So it created the notion that silence was indeed golden. And to the degree that carried over well after slavery had ended, that did us a fundamental disservice when the epidemic began."
On the decision to treat drugs and addiction as a criminal justice problem and not as a health problem
"Sharing needles for intravenous drugs was a primary means by which many people became infected. It is especially important, in the African-American community, to understand that in the late '80s and early '90s, roughly 40 percent of the cases of AIDS were basically identified among people whose major risk behavior was intravenous drug use. Between 1970 and 2010, we made a practice of making the war on drugs, which meant we were locking up the folks who were at greatest risk for being exposed to this virus."
"The simple fact that we're not taking appropriate public health measures to prevent the transmission of this virus means that in the very beginning of the epidemic, prisons became places where the virus had to have become transmitted freely. The danger, of course, in this kind of discourse is to demonize and stigmatize prisoners. I think it's probably more important to think about putting the onus for taking public health measures to prevent this kind of tragedy from happening on the folk who are responsible for running the prisons. Recognizing that the problem exists but not making moves to prevent terrible things from happening, like the transmission of HIV, means that more than anything else, we had a situation where prevention could have worked. We didn't seize the opportunity, and in failing to seize the opportunity, we're now living with the consequences."
On the attitude in some black churches
"In 1964, I was part of something called Mississippi Freedom Summer. I was a field secretary for the Student Nonviolent Coordinating Committee. I worked in a number of counties in Northern Mississippi, and really got a sense of the importance of the church and its capacity to galvanize community support around, for example, getting people to register to vote. When I started doing research and community work in HIV in the 1980s, I, like many folk working in the black community, went first to the church and said, 'Hey, we have another problem that really requires the galvanization of all elements of the community. You're the only institution left standing that really has the capacity to bring us all together. Let's get all this work done.' And what we were met with was an enormous amount of resistance. There were many, many folk who were clear about the importance of what we were doing, but they were in the minority. The vast majority were either unaware or uninterested or worse, were extremely homophobic — saw this as a gay problem that had nothing to do with them and were much more likely to engage in the kind of preaching [that was harmful] than just about anything else."
On the Affordable Care Act
"It's thought that maybe 20 percent of all African-Americans who are living with HIV/AIDS don't know that they're infected. And they don't know that they're infected because they haven't been tested. If the act is successful in increasing the rate at which people get regular checkups, become aware of their status and enter treatment, then I think we're going to see an important change in the direction of the epidemic. It's sad to say that prevention, right now in the U.S., is neatly characterized by the phrase: 'Treatment is prevention.' If you're in treatment and your viral load has been lowered, you're very unlikely to pass the virus onto someone else. It means we've taken a step back — we've acknowledged that there are some folk that are already infected, and the best we can do is make sure they don't infect someone else. That's a real tragedy compared to where we were in the 1980s, when we thought keeping folk from being infected in the first place was going to be our primary goal and objective."
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. Here's an alarming statistic that I heard in the new PBS "Frontline" documentary "Endgame: AIDS In Black America": If black America were a country, it would have the 16th highest HIV infection rate in the world. The documentary explores policies and practices that helped HIV spread in the black community.
The film features interviews with activists, pastors and policy analysts, as well as African-American men and women infected by the virus. "Endgame" was written and directed by my guest, Renata Simone. In the 1980s, she created the first national TV series about HIV/AIDS for PBS. She also produced the "Frontline" series "The Age of AIDS."
My other guest, Dr. Robert Fullilove, is one of the experts interviewed in "Endgame." He served as co-chair of the Centers for Disease Control's Advisory Committee on HIV and STD Prevention, and has served on five Institute of Medicine study committees that reported on HIV/AIDS, substance abuse and addiction, and tuberculosis. He's the associate dean for community and minority affairs at Columbia University's Mailman School of Public Health.
"Endgame" will be broadcast on the PBS "Frontline" series next Tuesday. Let's start with a clip from the film featuring Phill Wilson, head of the Black AIDS Institute. He describes how in the 1980s, when he first heard reports of a killer plague among gay men, he thought it had nothing to do with him.
(SOUNDBITE OF TELEVISION PROGRAM, "ENDGAME: AIDS IN BLACK AMERICA")
PHILL WILSON: I was a young, black, gay man from the South Side of Chicago. I had never even heard of Fire Island. I was not a West Hollywood person. I had, you know, barely ever been to San Francisco. I was in San Francisco when I was 10 years old. So, none of this mattered to me.
My thought was, you know, thank God it is them and not us. For once in a lifetime, it is about white people, and it's not about black people.
GROSS: Renata Simone, Dr. Robert Fullilove, welcome to FRESH AIR. The soundbite that we just heard, saying, you know, I thought it was about white people, it's about them, it's not about us. Why do you think it was so easy for many people in the African-American community when the AIDS epidemic started to think it was a disease of white gay people, and it just was not about them?
DR. ROBERT FULLILOVE: In the beginning of the epidemic, it's important to recall that we hadn't identified or isolated HIV as the infectious factor creating this disease that was nothing if not a total mystery. Please remember that in the earliest days, we called it GRID, Gay Related Immunodeficiency Syndrome.
And the name itself gave rise to the notion that this was something that was affecting Americans in a particular community, identified by their sexual preference, separate and apart from anything that folk in - by communities like Harlem or Watts were experiencing themselves. The presentation in the press was of a white epidemic.
GROSS: And Renata, in your documentary, you talk to African-Americans who say, for instance, that if you were African-American and gay and living in Oakland, it was really different than being white in San Francisco. Can you tell us a little bit of what people told you about that?
RENATA SIMONE: In making this documentary, I spoke with people who had all sorts of attitudes, and there is a disparity within the black community about how homosexuality is regarded. There are some people who say - esteemed people who say that the driver is the homophobia in the church. And there are others who say no, no, no, no, it's much more complicated than that.
I started to think of them as the three S's: stigma, silence and secrets that keep things in.
FULLILOVE: I think the documentary also makes a point of describing how much of African-American life is about secrets. The culture is very clear: You don't tell your business to everyone. You keep it in the family. You keep it within the centers and the circles that are familiar to you. To be preaching your business in the street is something that's simply not done.
So if you weren't mainstream, if you didn't find yourself to be part of a standard nuclear family, if your notion of a love was someone of the same sex, you kept that to yourself. And as a consequence, there was no free dialogue about the potential for risk that existed because of the presence of HIV in the world in general, and in our community in particular.
GROSS: Well, Bob, you actually have a kind of interesting theory about this notion in the African-American community that you don't put your business out on the street and how that connects to actual slave times.
FULLILOVE: Yeah, at some levels, we were so much afraid of what it meant to have what was happening in the slave quarters revealed to those who were empowered to direct every aspect of our lives. So we became secretive, because if there was dissention, if there was anger, the last thing you wanted to do was make that public. To make it public was to be punished.
So that created a notion that silence was, indeed, golden. And to the degree that carried over well after slavery had ended, to the degree that we came about in silence and keeping secrets, that did us a fundamental disservice when the epidemic began.
GROSS: I think a lot of people really have no idea how large the AIDS epidemic has become in the African-American community. So why don't you give us a sense of the scope of the epidemic.
FULLILOVE: When I started doing this work in 1986, roughly 20 percent of all of the people in the United States who were living with AIDS were African-American. The most recent statistics from the Centers for Disease Control indicate that 45 percent of all the new cases of HIV infection are amongst African-Americans.
It is the primary killer for those in the 19-to-44 age group. It is especially devastating with woman. It has continued to be one of the leading causes of death, and in the panoply, in the group of what the Centers for Disease Control calls health disparities, HIV/AIDS is ranked way up in the top five as one of the most important and more preventable causes of death currently challenging life in the African-American community.
It is an epidemic that continues to grow. It appears as if, since 1990, we haven't really seen a diminution in new cases. And if we continue on the current trend, in the year 2015, it's going to - in some communities, especially in places in the South - it will probably be the case that five to six percent of all African-American adults who are sexually active will be infected with the virus. It's serious.
GROSS: So are the demographics of the epidemic in the African-American community different than they've been in, say, the white gay community or the larger white community in the United States?
FULLILOVE: Yes, they are. One of the things that we have seen over the course of the last 30 years is that new cases amongst white gay men have been steadily declining. There are blips here and there, but right now amongst men who have sex with men, roughly 66 percent of the new cases are amongst African-Americans.
This is a dramatic difference from what we saw in the 1980s, and it's one of the reasons why we continue to be alarmed by the fact that 31 years into the epidemic, we haven't really seen the kind of progress that we should in the communities that are at greatest risk to being exposed to this virus.
GROSS: Dr. Robert Fullilove, you say one of the decisions that really fed the AIDS epidemic was the decision to treat drugs and addiction as a criminal justice problem, not a health problem. Why did that make a difference to the AIDS epidemic?
FULLILOVE: It's important to recall that in addition to being a sexually transmitted disease, HIV in its early days was also transmitted by unsafe drug use practices: sharing of needles for folk who were injecting drugs was a primary means through which many people became infected.
It is especially important in the African-American community to understand that in the late '80s and early '90s, roughly 40 percent of the cases of AIDS were basically identified among folks whose major risk behavior was intravenous drug use. Well, the fact that between 1970 and 2010, we made a practice of making the war on drugs, meant we were locking up, putting into prison, the folks who were at greatest risk for being exposed to this virus.
I've argued that the circulation between prisons and the community of folk who were exposed to HIV because of their drug use is one of the primary factors driving the epidemic.
GROSS: In prison there was a lot of AIDS that was spread, yes?
FULLILOVE: In the very beginning of the epidemic, I think it was very clear that the fact that there is a lot of same-sex sexual behavior in prison, and in many prisons a lot of unsafe drug-use patterns, I think it's real clear that prisons became...
GROSS: And can we add a lot of rape?
FULLILOVE: A lot of consensual sex, as well as non-consensual sex. The fact that this was the norm in many prisons in the late '70s and early '80s meant that the introduction of this virus into those social settings, meant that you were going to have a primary way of almost ensuring that folk were going to exposed, folk were going to be infected and that they'd carry their infection back to the community when they returned.
GROSS: And then to make matters worse, you say the law that mattered most to the spread of HIV was the drug paraphernalia law, and what was that law?
FULLILOVE: The drug paraphernalia law basically said if you were in possession of drug equipment, equipment that was going to be used to inject drugs into your body, and you did not have a prescription - for example, because you were a diabetic - then that was prima facie evidence that you were engaged in an illegal activity, that you were in possession of drugs, that you were about to use drugs and that therefore you were basically someone who was in the process of committing a crime.
One of the things that this did, especially in a city like New York, which has led the nation in terms of the numbers of people living with HIV/AIDS, it drove a lot of the sale of paraphernalia, from the streets, into shooting galleries.
So instead of carrying your works on you, as you were walking the streets, you wound up going to a place, frequently a deserted building, where you could be sold drug-use equipment in addition to the drug of choice. And the fact that so many folk used in groups meant that typically what would occur is that people would buy one set of works, one syringe, and then they'd share it, they'd pass it around.
If one person in that network was infected with HIV, this became an extraordinarily efficient way of making sure that everybody in that particular network was going to be exposed and would therefore be infected.
GROSS: My guests are Dr. Robert Fullilove, a policy analyst on HIV and STDs, and Renata Simone, director of the new PBS "Frontline" documentary "Endgame: AIDS In Black America." More after a break; this is FRESH AIR.
(SOUNDBITE OF MUSIC)
GROSS: We're talking about the new PBS "Frontline" documentary "Endgame: AIDS In Black America." My guests are the director, Renata Simone, and Dr. Robert Fullilove, a health policy analyst and a professor at Columbia University.
Renata, in your documentary, you take your cameras to a harm reduction program. Tell us where this was and what harm reduction is.
SIMONE: Harm reduction is the idea that the way that you can help people who are using drugs is to keep them from getting any sicker, to keep their health from declining any worse because of their drug use. And so we went down to Atlanta, and there's a program called the Atlanta Harm Reduction Center in the Bluff, which is a very, very poor neighborhood.
And it's an area where you drive through, and it doesn't look like a terribly bad area, but it is. This wonderful outreach worker Jeff McDowell(ph) has been setting up, as we say in the documentary, on the same corner for 17 years once a week. And they give people food, they help them get access to health care if that's what they need, and if on a certain day someone comes up to Jeff and says you know, I think I want to stop using drugs, then he goes on a mad search for a bed in a treatment facility.
Sometimes he can find them; sometimes he can't.
GROSS: But isn't one of the goals of harm reduction to hand out needles to IV drug users so that if they are going to use IV drugs they're at least using a clean needle and not getting infected and then spreading the AIDS epidemic?
SIMONE: Right, that's the controversial part of it. People do use a lot of needles. When you have a drug addiction, Jeff McDowell told us nine needles a day is not a high number, which is why you see the woman counting over 100 from one person.
GROSS: And Dr. Fullilove, to get back to the epidemic of AIDS in prison, you say that since it's against prison regulations to have sex, prisons can't disseminate condoms, even though, like, prison officials know that there's sex happening in the prison. I wonder what your thoughts are on that.
FULLILOVE: Well, I think it's the classic Catch-22. On the one hand, it's really known that sexual behavior occurs. Prison guards, prison officials, prison administrators do the best that they can when rape is threatened for some inmate who's perceived to be really helpless. And this is an acknowledgement, a recognition of the fact that sexual behavior is present, and it's so much a part of life on the inside that specific measures have to be taken to protect individuals from being assaulted.
Well, the moment you admit that the possibility exists that people are going to be sexually active, the presence of a sexually transmitted disease that is transmitted when sex is unprotected means that you have to take public health measures to prevent that from happening.
The fact that we recognize that this is reality, the fact that we recognize that sex occurs and that it can often be nonconsensual and dangerous but that we don't do anything protect folk who are engaged in consensual sexual behavior, but the simple fact that we're not taking appropriate public health measures to prevent the transmission of this virus means that in the very beginning of the epidemic, prisons became places where the virus had to have become transmitted freely.
The danger, of course, in this kind of discourse is to demonize and stigmatize prisoners. I think it's probably more important to think about putting the onus for taking public health measures to prevent this kind of tragedy from happening on the folk who are responsible for running the prisons.
Recognizing that the problem exists but not making moves to prevent terrible things from happening, like the transmission of HIV, means that more than anything else, we had a situation where prevention could have worked, we didn't seize the opportunity, and in failing to seize the opportunity, we're now living with the consequences, you know, reaping the whirlwind, as they used to say.
GROSS: So you've described how IV drugs helped spread the AIDS epidemic, how prison helped spread the AIDS epidemic. You also talk about crack spreading the AIDS epidemic. Now, crack isn't an IV drug, it's smoked. So what's the contribution you think crack made to spreading AIDS within the African-American community?
FULLILOVE: My ex-wife, Mindy Thompson Fullilove, was the one who, in 1987, became very clear that sex work associated with smoking crack cocaine might just possibly be an important avenue for the transmission of the virus. It became very clear that in the throes of a crack cocaine addiction, men and women could often offer themselves as people who were willing to dispense sexual favors in exchange for having crack.
As a consequence, crack-for-sex exchanges became an integral part in the late '80s and early '90s what we used to call the mix, crack cocaine culture, in many inner-city communities. If you have unprotected sex with somebody who was infected with HIV, the likelihood for transmission was huge, and it became clear in the work that we did during that period of time that large numbers of folk who were not intravenous drug users were being exposed to the virus because of crack-related sex work.
And this, too, was something that we had an opportunity to really impose some important public health preventive measures, but we missed the boat.
GROSS: There's one other thing I want to bring up related to prison and the spread of the HIV epidemic in the African-American community. Dr. Robert Fullilove, you walk about how the prison epidemic led to this imbalance in the populations, and so many African-Americans men were put in prison, many for drug-related crimes, for using crack, for using IV drugs. There were so many men in prison that it led to this imbalance outside in the female-to-male population.
Can you talk about that and how you think that affected the spread of HIV?
FULLILOVE: Yeah, I think at the height of the madness that drove up the prison populations in the United States, there were many inner-city communities where...
GROSS: You're talking about the '80s and '90s?
FULLILOVE: Yes. Think about it this way: In 1972, there were 200,000 men doing time in federal prisons in the United States. By 2010, that number had grown to 2.3 million. That's an enormous increase. On any given day of the week, you would have in some communities somewhere between, oh, 35 to 45 percent of all the young men between the ages of 19 and 29 in jail, on parole or under the supervision of the court.
This means that a large number of men of marriageable age have suddenly been taken out of the community. You're going to have an imbalance, a huge imbalance, in which you're likely to have two women of marriageable age for every one man who's present in the community.
Sandy Lane(ph), who is a sociologist at the State University of New York at Syracuse, is someone who's pointed out that when you have this kind of population imbalance, when you have this kind of gender mix, many of the rules that govern mating behavior in the community are simply going to go out the window. The competition for a man is going to become so extreme that one of the things that a woman can easily do is say hey, you want to have sex, there doesn't need to be a condom. There doesn't need to be anything separating natural me from natural you.
And in that kind of situation, where we're trying to say you've got to have sex with a condom, all of the prevention measures that we have been trying to create over the course of the last 30 years literally go out the window.
GROSS: Wait, wait, because you're saying the person who uses - the woman who's willing to have unprotected sex has the edge over the woman who insists on protected sex, on safe sex?
FULLILOVE: Once again, I think that, although folks have done a great deal over the course of the last couple of years to make sexual behavior that is protected sexy, for the most part, the perception is, especially in these communities, what is natural is best, and what's natural is for there to be nothing artificial, no latex between me and you.
And in that kind of situation, where that's a cultural norm, anyone who says I'm willing to not only have sex, but it can be sex that's natural, sex that's engaged in without a condom I think is going to have a competitive edge. And I think the statistics not just for HIV but for other sexually transmitted diseases - Chlamydia, gonorrhea, syphilis - I think those statistics really make it clear that there is a lot of unprotected sex going on in these communities.
I mean, one statistic that has always struck me is that gonorrhea is 19 times more likely to be found amongst African-Americans than it is amongst whites. That kind of enormous imbalance, that kind of huge disparity I think is eloquent and rather elegant ways of describing the degree to which unprotected sex is the norm in many of these communities.
GROSS: My guests will be back in the second half of the show. Renata Simone is the director of the new PBS "Frontline" documentary "Endgame: AIDS In Black America." Robert Fullilove is a professor at Columbia University. This is FRESH AIR.
(SOUNDBITE OF MUSIC)
GROSS: This is FRESH AIR. I'm Terry Gross. We're talking about the impact of HIV/AIDS on the African-American community and how the virus spread. That's the subject of the new PBS Frontline documentary "Endgame: AIDS In Black America." It will be shown next Tuesday evening. My guests are the director, Renata Simone, who has made several documentaries about AIDS, and Dr. Robert Fullilove, a professor of clinical socio-medical sciences at Columbia University's Mailman School of Public Health.
Renata Simone, in your Frontline documentary "Endgame: AIDS In Black America," you talk about how the AIDS epidemic spread among women in the African-American community and how the women weren't accurately diagnosed for a long time because a lot of the measures that were used to diagnosed AIDS were actually different in men and in women. Would you describe some of those differences?
SIMONE: AIDS is a syndrome. It's Acquired Immune Deficiency Syndrome, and in that is a list of diseases. So in the early days there were people who presented with very, very rare things, this pneumocystis pneumonia, a form of cancer with skin lesions, and they put all of that in a list and they said, well, this is what you get when you get AIDS.
And when women get AIDS, they don't get that list. They can and a lot of them do, but a lot of women also get reproductive cancers, and of course those diseases wouldn't be on the list. So there's really no way of knowing how many women were infected in the early days and how many women were passing the virus to their children without knowing it in utero.
GROSS: So, like, a woman could have been diagnosed with dying from ovarian cancer but it's possible the ovarian cancer was related to AIDS.
GROSS: And we wouldn't have known early on.
SIMONE: Absolutely. The posters that people used to carry around said things like Dead But Not Diagnosed. That's what was happening in those days. And so the other problem was prevention wasn't targeted at women and so you had women not really realizing what they were risking when they entered into this sort of social life where there were so many more women than men.
GROSS: You say in the film, in your documentary, that once women with AIDS were accurately diagnosed, the statistics just skyrocketed for women.
SIMONE: Mm-hmm. They did, because those were all the women who weren't being diagnosed at all. And so between '92 and '95, in those years immediately following the expansion of the definition, the number of women went up 66 percent. And those are women who ordinarily before this would have been completely out of the system, ineligible for drugs, ineligible for any of the social service programs that were around at the time.
And they were women - I've interviewed a few of them in the film - but they were tremendously frustrated.
FULLILOVE: So the fact that we were not diagnosing women as having full blown AIDS when in fact their immune systems were crashing meant that they weren't eligible for housing. Nor were the kids that they were trying to bring up. They weren't eligible for a whole host of economic as well as treatment benefits that automatically come once an AIDS diagnosis has been reached.
So it wasn't just that we had a different and better and more efficient way of counting the number of people who were caught up in the AIDS epidemic; it also meant that the level of service that we could render to individuals and especially to children was going to fundamentally change at the moment that we recognized that a variety of different vaginal representations of HIV disease were as important a way of diagnosing AIDS as any of the ones that we were accustomed to using in examining HIV infection in men.
So there were definite economic consequences that changed at the moment that we altered the definition to include AIDS as found in women as distinct and separate from AIDS that we start - AIDS that we see in males.
GROSS: Renata, one of things you explore in your documentary "Endgame: AIDS In Black America" is the role of the church in the African-American community during the AIDS epidemic. And I want to play a clip from the film, and this is somebody named Joe Hawkins, who is gay and is describing a homophobic encounter he had in church.
(SOUNDBITE OF FILM, "ENDGAME: AIDS AND BLACK AMERICA")
JOE HAWKINS: At the time I was very much into religion and, you know, I was raised that way. But one day my roommate, he asked me to come to his church and there was a minister standing in front of me and he said: There's a demon here, a homosexual demon. And I thought, I mean, you know, usually in church often you will feel it's you and they're not talking about you directly. But he was talking about me.
And he said we learned that there is a homosexual demon here. He walked right in front of me and put his hand on my head and started trying to cast the homosexual demon out of me. And I felt so crushed and so betrayed by my roommate. You know, I literally got up and I grabbed the guy's - the evangelist's arm and twisted it and I said there's a demon in here and it's you. And I just walked out of the church.
GROSS: So that's an excerpt from the new Frontline documentary "Endgame: AIDS In Black America" which will be shown July 10th. Renata Simone, you directed the documentary. Did you meet, you know, a lot of people who had a similar story - that their church leaders were homophobic and they couldn't be out in church, they couldn't get any support from their church?
SIMONE: Absolutely. And the church is such an important source of support in the black community. And the clip that you played with Joe Hawkins is typical. I heard lots of stories like that around the country. And Joe is interesting because he's a social worker and he felt that the AIDS epidemic was something that you could only approach if you could really get peoples' ear and that social work wasn't going to do it.
So he opened a bar and the nightclub became a place where he did outreach. There's a huge basket of condoms at the door and, you know, that's an example of somebody going around what he sees as the roadblocks like the church and figuring out how to do it.
GROSS: Dr. Robert Fullilove, do you think that the anti-gay attitude within a lot of African-American churches in a way help spreads the AIDS epidemic or at least didn't help in stopping it?
FULLILOVE: Absolutely. I am, amongst other things, a real veteran of the Civil Rights Movement in the 1960s. In 1964 I was part of something called Mississippi Freedom Summer. I was a field secretary for the Student Nonviolent Coordinating Committee.
I worked in a number of counties in Northern Mississippi, and really got a sense of the importance of the church and its capacity to galvanize community support around, for example, getting people to register to vote.
When I started doing research and community work in HIV in the 1980s, I like many folk engaged in working in the black community went first to the church and said: Hey, we have another problem that really requires the galvanization of all elements of the community. You're the only institution left standing that really has the capacity to bring us all together. Let's get this work done.
And what we were met with was an enormous amount of resistance. Oh, there were many, many folk who were very clear about the importance of what we were doing, but they were in the minority. The vast majority were either unaware and uninterested, or worse, were extremely homophobic, saw this as a gay problem that had nothing to do with them.
And for the last eight years I've been one of many engaged in a number of activities funded by the Centers for Disease Control to try and change the attitudes of black clergy so they become more part of the solution as opposed to part of the problem, and creating prevention efforts that will keep the community safe from the ravages of HIV. And it is still...
GROSS: Do you feel like you've made any progress? And what has your approach been?
FULLILOVE: Yeah. The approach has been varied. A lot of folks were trying to really help people understand the nature of the scriptural evidence that they believe supports the notion that the church should be involved in galvanizing the community to create this kind of support for prevention activities.
My own approach has been to talk about the relationship between HIV/AIDS, the prisons, and the large number of folk who are going to be coming home back to the community, looking for an opportunity to reengage in community life. I've pointed out that the church has a social responsibility to be the force in the community that makes it possible for these men, and in many cases women, to be welcomed back home.
And I've insisted that in engaging this as a commitment, part of what they also will have to deal with are the enormous number of health problems that people in this situation are going to face as they come back to the community.
They will be attacked by a wide variety of chronic diseases, HIV being one of them, and it's important that they not close the door. It's important that they not engage in a kind of stigmatizing routine that will create a set of outcasts within the community.
And in order to create a truly welcoming community, one of the things that they'll have to confront is their fear of dealing with folk who are HIV infected as a result of homosexual activity. And I've tried to use this approach because I think we've spent the last 25 years trying to get the church to not become so focused, so obsessed with their concerns about sexuality and have them look at the role that they can play.
The history that they've had in this country has been the center of community life and the voice that's enabled us to get together to confront the problems that the community faces. So I'm really trying to use sort of a health ministry approach that's much broader than one that's focused specifically on HIV, and to some degree I think that has worked.
But I still think it's an uphill battle.
GROSS: My guests are Dr. Robert Fullilove, a professor of clinical socio-medical sciences at Columbia University, and Renata Simone, director of the new PBS Frontline documentary "Endgame: AIDS In Black America." More after a break. This is FRESH AIR.
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GROSS: If you're just joining us, my guests are Renata Simone, who wrote and directed the new documentary "Endgame: AIDS In Black America" that will be shown on July 10th on the PBS "Frontline" series; and also with us is Dr. Robert Fullilove, who's one of the interviewees in the film.
He's been a researcher and policy analyst in public health with an emphasis on HIV since the 1980s and he's the associate dean for community and minority affairs and a professor of clinical socio-medical sciences at the Mailman School for Public Health at Columbia University.
Do we have anything that you would describe as an AIDS policy in the United States coming from the federal government to address the spread of AIDS and to try to deal with it as an epidemic and to do that acknowledging the role that prison and IV drugs and sex work has played in the spread of the epidemic?
SIMONE: Yes, we do. Now we have a national AIDS strategy and it's a very comprehensive program and it was formed over a year and a half and a tour around the country where the panel that was going to make the policy interviewed people across the country and they came up with a very comprehensive program.
But even now, only three percent of the federal domestic dollars spent on HIV, three percent of that money is spent on prevention. So, you know, I think we still have a long way to go in policy terms and I think with the film what I tried to do was help a general audience see that this is an epidemic not just of, you know, drug users and people who are sex workers - the thing that comes to mind when you think of black AIDS.
This is an epidemic that affects people who make you think but for the grace of God there go I. There's, you know, now a 64-year-old grandmother. There's a woman who works in a restaurant. There's Magic Johnson, you know, who speaks very candidly with me about the whole experience he had.
And, you know, so even my sister, who, you know, has been around my work on HIV for so many years, watched the film and said, Renata, I had no idea how many different kinds of people have HIV. So you know, while we think of these heavy policy issues and where there epidemic got dug in, in the '80s, through the, you know, new drug laws and prison, right now, today, in 2012, this is an epidemic of people that we recognize and who, if our lives were any different, we could be.
GROSS: So now that the Supreme Court has said that the Affordable Health Care Act is constitutional, how - are you hoping that act will affect the spread of HIV and help people who have HIV?
SIMONE: The Affordable Care Act will absolutely help the more than a million people in the United States who are HIV positive, and this new law safeguards against the most important thing, which is denial of coverage for preexisting conditions. I know so many people who have HIV, can't afford the care from private insurance, and have been turned down by everyone. Every insurance they try to apply for find out they have HIV and they just say no, thank you.
It also prevents people from - insurance companies from charging disproportionate or exorbitant premiums for the care. You know, and again, I've known many, many people all over the country who say, how can I afford $2,000 a month for health insurance? I'm a bartender. You know, I work in Starbucks.
FULLILOVE: I think more than anything else, the fact that this is an act that will increase access to a variety of health care services, not least of which is screening and regular checkups - so much of what we've been doing in prevention is asking people to be aware of their HIV status and it's thought that maybe 20 percent of all African-Americans who are living with HIV/AIDS don't know that they're infected and they don't know they're infected because they haven't been tested.
If the act is successful in increasing the rate at which people get regular checkups, if it increases the rate at which people become aware of their status and therefore enter treatment, then I think we're going to start to see an important change in the direction of the epidemic.
It's sad to say that prevention right now in the U.S. of HIV is neatly characterized by the phrase treatment is prevention. The notion that if you're in treatment and your viral load has been lowered; that is to say, the amount of virus in your blood has been reduced to a level that's undetectable, you're very unlikely to pass the virus on to someone else, it means that we've sort of taken a step back.
We've acknowledged that there are some folk who are already infected and the best we can do is make sure they don't infect someone else. That's a real tragedy compared to where we were in the 1980s where we thought that keeping folk from being infected in the first place was going to be our primary goal and objective.
I believe that the Affordable Care Act puts a new public health face on medical care in the United States. We'll start thinking about prevention in much more aggressive terms. And thinking about prevention in aggressive terms ultimately means that we'll start to really turn the tide with HIV.
GROSS: I want to thank you both so much for talking with us. Renata Simone, Dr. Robert Fullilove, thank you so much.
SIMONE: Thank you for your interest in the film. Thank you.
FULLILOVE: And thank you for having us.
GROSS: Renata Simone is the director of the new PBS "Frontline" documentary "Endgame: AIDS in Black America." It will be shown Tuesday. Dr. Robert Fullilove is one of the film's interviewees. He's a professor of clinical socio-medical sciences at Columbia University's Mailman School of Public Health.
We recorded our interview Tuesday. Later in the day the FDA approved a new home-use HIV test kit that will make it possible for people to test themselves at home. While this offers a new way to increase the number of people who will be tested, it's essential that anyone who tests positive at home seeks counseling and medical care.
Coming up, jazz critic Kevin Whitehead reviews a new album by bassist Linda Oh. This is FRESH AIR. Transcript provided by NPR, Copyright NPR.