In The South, Examining An HIV Epidemic
On June 5, 1981, the Centers for Disease Control and Prevention published a report of five gay men in Los Angeles suffering from a rare lung infection. This would mark the first official report of the AIDS epidemic in the United States. White, gay men in large cities, like New York and San Francisco, were the initial populations hardest hit by the epidemic.
Today, the HIV epidemic has shifted southwards—nearly half of the people living with HIV reside in the southern United States with African American gay and bisexual men making up a disproportionate number of those cases, according to the CDC. Journalist Linda Villarosa, who has reported on the epidemic, and physician Leandro Mena, a medical director of the Open Arms Clinic in Jackson, Mississippi, discuss the underlying causes of the epidemic, including funding, stigma surrounding HIV, and what programs and interventions are trying to stop the disease in the region.
Linda Villarosa is a contributing writer for the New York Times Magazine and Director of the Journalism Program at the City College of New York in New York, New York.
Leandro Mena is Medical Director at the Open Arms Healthcare Center and Director of the Center for HIV/AIDS Research, Education and Policy at the University of Mississippi Medical Center in Jackson, Mississippi.
IRA FLATOW: This is Science Friday. I’m Ira Flatow. World AIDS Day is today, in case you didn’t know that. It has been over 30 years since the disease was first documented in the United States. The first official CDC report about the AIDS epidemic came out in June of 1981, and how I remember that. And those initial cases were in gay white men in big cities like New York and San Francisco.
And since that time, new treatments, funding and interventions have decreased the overall rate of new infections. But the latest CDC report shows that the highest concentration of HIV cases has shifted. Almost half of the people living with HIV reside in the South, and the hardest hit are African-American gay and bisexual men. The causes are a mix of complicated factors dealing with funding, access to health care, and stigma that still exists about the disease.
One city in particular that has been hard hit is Jackson, Mississippi. My next guests are here to help us delve into the details of what is happening in Jackson and across the American South. Linda Villarosa is a journalist and Director of the Journalism program at the City College of New York. She has written about the epidemic in Jackson. Welcome to Science Friday.
LINDA VILLAROSA: Thank you very much
IRA FLATOW: Leandro Mena is a Director of the Center for HIV/AIDS Research, Education, and Policy at the University of Mississippi Medical Center, and he’s a clinician working in Jackson. Welcome Dr. Mena for taking time to be with us today. Thanks to have you.
LEANDRO MENA: Thank you for having me.
IRA FLATOW: Linda, you’ve been covering AIDS and HIV almost since the beginning. Can you give us a brief trace of the disease, how it’s become so concentrated in these communities in the South?
LINDA VILLAROSA: Well comes to mind is “left behind.” And so, part of it is because so much of the attention was focused, like you were saying, in the north or in big cities, in white gay male populations. And so, for various reasons and over a long period of time, the disease has just gotten more concentrated in the South and really in Black gay and bisexual men.
IRA FLATOW: Leandro, you’ve worked as a clinician in Jackson for 15 years. Tell us how you have seen the patterns of the disease change.
LEANDRO MENA: Well, I think over the last 15 years we are going through a process that is giving us a better understanding of the HIV epidemic that is affecting our region. Jackson, Mississippi is a state that it has a relatively small population of three million people. Jackson is a moderate sized city, but it is very representative of what is happening in many of the cities in many of the Southern states that have very similar culture and social context. And I think what we have learned is that we have gone from not knowing and not speaking about what we have to recognizing the challenges that we have ahead of us. And how the number of HIV cases are increasing in staggering rates. And how in incredible ways, it’s an incredible time that we’re living is that you can argue that science has given us the tools to end the HIV epidemic. In many places in the South we continue to see how those advances have not really reached the population who is at risk.
IRA FLATOW: Let’s talk about, Linda, why are they not getting what other people are getting.
LINDA VILLAROSA: Well first, Hi Dr. Mena. And I love the work he’s doing. And we must say this, that on the ground there are a lot of people who really care about this issue and who are working very hard. But some of it is just– has to do with transportation. Some of it has to do with other kinds of–
IRA FLATOW: Let’s talk about it. For example, transportation.
LINDA VILLAROSA: So what I noticed was people had trouble getting around if they did not have a car. So in New York City, where we are, there’s a wonderful subway system and buses. But in Jackson, the buses are really bad. It takes an hour– you might have to wait for a bus an hour and then another bus another hour to get back. And so I noticed the transportation was a big thing.
Also many of the infrastructures are just really not that good. And so some of the clinics are not as good, not as strong as they should be. They don’t have all of the latest equipment and things like that. But I think the infrastructure thing really struck me. The amount of money, you saw a lot of people who very poor. So if you are poor you’re not as worried about HIV and even your own health because you’re worried about survival. And I did see a lot of that, where people were thinking first about, “How am I going to eat?” “How am I going to take care of myself?” Not exactly, “How am I going to prevent HIV?” if I know about it.
IRA FLATOW: Dr. Mena, if people do come to you, do you have the resources to treat them and help them?
LEANDRO MENA: I do. But again, to a certain a extent I think as bad as things could be, the services that we provide in the city of Jackson could be, people who live in the metropolitan area of Jackson are somehow privileged. We have University of Mississippi Medical Center that cares for approximately 30%, 40% of people who are HIV infected who are in care.
But 55%, like Linda said, of the population in the city of Jackson, live in rural areas. And for those individuals who are HIV infected who live in rural areas, who don’t have reliable transportation getting access to quality care is quite a challenge. Not to mention that very often they only care that may be available to them sometimes may be in places where they may not necessarily feel comfortable in terms of their protection of their privacy, because people who they know may work there. So that presents challenges.
In terms of access to care we in the Jackson area, there are a number of providers that provide state of the art care for HIV. But in many of the rural areas, even access to HIV testing is fairly precarious.
IRA FLATOW: Hm. So I guess Linda when you said, for example, people don’t take the bus. It’s too long a bus ride. But from what I hear about the privacy issue, they are fearful of asking for a ride because of the stigma involved.
LINDA VILLAROSA: I remember there was a guy I was interviewing and he was he was at a smaller city maybe two hours east of Jackson. He was very ill by the time he found out he was HIV positive. And I said, “Why didn’t you know? Why didn’t you get tested?” and he said, “I was afraid to go to the local hospital to get tested, I knew they offered testing, because my aunt worked there. Everybody knows my grandmother there. Everybody knows my mother there and so I didn’t want to go there.” And that is a common problem.
IRA FLATOW: But is that because it’s a small town?
LINDA VILLAROSA: It was a small town.
IRA FLATOW: But being in the South, does that add additional stressors also?
LINDA VILLAROSA: Yes because the stigma is just higher there. It just is. And at once, where you have people who are open and you have people who are loving, and you have people who are really doing a lot of work in this area, you have other people who just have high stigma against LGBT people. And it’s very hard for them to talk about that. There’s the church that makes it difficult. A lot of the guys I interviewed I said, “I know you grew up in the church, does the church give you some kind of solace?” and they said, “No, it’s the opposite. The church is actually hostile. I’ve stopped going.”
IRA FLATOW: Wow.
LEANDRO MENA: If I can add. I think the stigma ties up in poverty because the issue and the challenge is that many of these individuals who are at risk of HIV or who are infected with HIV, who live in poverty are all vulnerable, more vulnerable than other populations may be to stigma. So they depend on their families. They depend on very often the support of families and friends in order to just get by. And they are afraid of how this support may be jeopardized by people learning that they either are HIV infected or they may be gay.
LINDA VILLAROSA: I interviewed someone who was a college student, who had been a college student. But then when he came out to his family they said, “Leave.” And so he ended up in a homeless shelter, HIV positive in a homeless shelter. And so like you’re saying, Dr. Mena, it’s like you– part of it is you’re living already just close to the bone. And so if you lose the support of your family because they don’t accept who you are, that makes you vulnerable to all kinds of health problems and issues including HIV.
IRA FLATOW: I know there’s an idea that the rate of infection has something to do with having a lot of partners, Dr. Mena, but it has to do with the prevalence of the virus in this community, right? The high level of virus here?
LEANDRO MENA: Absolutely. A lot of work has been done. And certainly we know that– a lot of work has been done trying to explain why the disparities in the HIV infection rates between African Americans and whites. And one thing that has been proven is that difference in behavior don’t explain these changes. When you compare white men who is with men and Black men who is with men, they even have similar behaviors. That doesn’t necessarily explain why Blacks are much more likely to be infected with HIV than whites.
And what seems to explain, and I think Linda mentioned at the very beginning, I think have more to do with access to health services, with a background prevalence of HIV that may exist or exists in the African American gay community. So even if you have only one partner or two partners, which by all– people would argue that’s not really having too many partners, but chances that one partner may be positive is much more higher in networks of African American men who are with men than what it may be in other sexual networks. So behavior really doesn’t exactly explain these disparities. Access to health insurance and to health services so people can get tested for HIV or receive treatment for HIV is a more important reason.
IRA FLATOW: So let’s talk about solutions. Are there? Linda, any? What’s the solution or a solution?
LINDA VILLAROSA: I think one of the solutions is really to support the people on the ground that are doing the work. by support I’m just going give money. And so there always needs to be more money. There needs to be more technical assistance.
IRA FLATOW: Where would the money come from?
LINDA VILLAROSA: The money should come from our government which is, I know, a ridiculous thing to say right now. But the money can also come from pharmaceutical companies. The money can come from nonprofit organizations. There just needs to be more money and support, and technical support.
But I think that one thing I learned from having spent time there, is we also have to give acceptance and love. And to say we understand what’s going on, it’s hard, we’re not judging you. We’re just trying to see what can we do, how can we assist you, aid you, lend what we have, give what we have to you.
IRA FLATOW: Dr. Mena let me talk about the money for just a bit with you The South does not receive as much funding for HIV and AIDS as other parts of the country considering how many people are living with the disease in that area. Why is that? And is it possible to change that?
LEANDRO MENA: Yes, I think it is possible. And you’re correct. By the way a lot of the care for HIV is funded through the federal government thanks to the Ryan White Care Act that Congress re-authorizes every five years and provides care for– is a [INAUDIBLE] resource for the care of HIV. It cares, probably, for almost half of individuals who are HIV infected in the United States.
And what happens is that the formula that is used for allocation of HIV resources takes in consideration the total number of cases of HIV. So if you think about that, that includes a lot of individuals who may no longer be living with HIV or be living anymore. So the formula is skewed towards cities or states like New York City or California or some of the larger cities in California and the Midwest. And that affects, negatively impacts, the smaller cities in the South that have a much more, if you will, younger epidemic.
But I think the urgency and the needs of the South are being recognized. I think that, as I said at the beginning, luckily we have the tools to really end the HIV epidemic. What we need is the investment to make sure that these tools reach the population that are in the greatest needs. And if we don’t figure it out as a community, I think the challenge that we have is that in a few years HIV can become mainly a problem of the South.
IRA FLATOW: This is Science Friday from PRI, Public Radio International. That’s interesting that you say that. You mean you just would be isolated as mostly in the South, is what you’re saying, Dr. Mena?
LEANDRO MENA: Right.
IRA FLATOW: So it would be known as a problem in the South. Now I know that you at the University of Mississippi Medical Center run an LGBT clinic, a successful one I’m assuming. Are there lessons you can learn from that experience?
LEANDRO MENA: Well certainly. We don’t run the clinic at the University of Mississippi. The clinic is actually run by a community-based organization My Brother’s Keeper which is a community-based organization with whom we partnered to build this clinic. And primarily it’s because we wanted to create a space where the community feel welcome, feel included, where people didn’t feel judged by who they were, or their choices. Or who they were of individuals, or infections that they had, or where they seek prevention or treatment of these things.
That clinic opened its doors in February 2013. And since then what we have seen is one, an incredible, increasing awareness among health care providers and health care systems both in our city, in our state, and even in our region of the need to build health care systems that are culturally competent, who are capable of delivering quality care for gender and sexual minorities that are affected by so many health disparities including HIV and sexually transmitted infections.
IRA FLATOW: So the conversation has begun in larger communities.
LINDA VILLAROSA: I agree. And I also like My Brother’s Keeper isn’t just about HIV/AIDS. It’s about health care disparities and it’s about all kinds of health care. So when you go there, you don’t necessarily– I mean people in the know know it’s an HIV/AIDS clinic or an LGBT clinic, but there are other people getting treated for other things there. And so it feels more community, and less very specific about this one disease.
IRA FLATOW: Well, we’ve run out of time. But I’d like to thank both of my guests Linda Villarosa, journalist and Director of the Journalism program at the City College of New York. Leandro Mena is Director of the Center for HIV/AIDS Research, Education, and Policy at the University of Mississippi Medical Center and a clinician working in Jackson. Thank you both for taking time to be with us today.
IRA FLATOW: Thank you.
LEANDRO MENA: Thank you.
IRA FLATOW: You’re welcome.