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Isolation and stigma sustain HIV in the South: ‘It’s like we’re on a deserted island’

In the rural South, poverty, prejudice and lack of health care are exacerbating the spread of HIV, making it the epicenter of HIV/AIDS in America. William Brangham and Jason Kane, along with Jon Cohen of Science magazine, meet some who are pushing back against this stigma. This report is part of the NewsHour’s ongoing series “The End of AIDS: Far From Over,” with support from the Pulitzer Center.

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  • Judy Woodruff:

    Now the last in our series, The End of AIDS.

    Last night, we looked at the severe epidemic in the city of Miami, Florida.

    But as William Brangham and producer Jason Kane report, the rest of Florida is struggling, too.

    In the American South, stigma, poverty and lack of health care drive HIV rates higher than anywhere else in the country.

    This series was supported by the Pulitzer Center.

  • William Brangham:

    HIV thrives in places like this. While the Florida Keys are a tourist mecca, its sprawling distances and small towns make it a hard place to contain a virus.

    Some patients, like Jason Barth, do seek out lifesaving HIV care, which is now proven to prevent transmission of the virus to others. But Dr. Jerry Jackson says many don’t come. And so new cases keep popping up in the Keys.

  • Dr. Jerry Jackson:

    We should have zero. But, instead, last year, I think we had 22 in our small little town.

  • William Brangham:

    Locals here joke that heading north in Florida takes you straight into the Deep South. That includes a place known as America’s Sweetest Town: Clewiston, Florida. Home of the sugar company U.S. Sugar.

  • Timothy “Tad” Dean:

    Yes, I was the first male cheerleader in Clewiston.

  • William Brangham:

    You were so cute.

    And home to Timothy “Tad” Dean.

    Do you remember any of the cheers from those days?

  • Timothy “Tad” Dean:

    I do, but I’m not doing them.

    (LAUGHTER)

  • William Brangham:

    I don’t blame you.

    Almost 8,000 people live in Clewiston, on the banks of Lake Okeechobee, and Dean jokes that every single one of them knows his name. They know his family. And they know that he’s gay.

  • Timothy “Tad” Dean:

    Everybody in this town knows who I am.

  • William Brangham:

    Is that right? Everybody?

  • Timothy “Tad” Dean:

    Everybody in this town knows who I am.

  • William Brangham:

    You mean the guy at the gas station, the…

  • Timothy “Tad” Dean:

    The gas station.

  • William Brangham:

    The taqueria?

  • Timothy “Tad” Dean:

    The police department. The sheriff’s department. I mean, Good Will. I mean, everybody knows who I am. And everybody should know my story by now.

  • William Brangham:

    That’s partly why, 15 years ago, Dean was devastated to learn he was HIV-positive. He was scared of the virus, yes, but more so by the prejudice and myths people have about those living with HIV

  • Timothy “Tad” Dean:

    You can’t touch their hand. You can’t do anything with them, because they’re infecting everything. You didn’t want to go to the theater with them, because that seat was now infected. Or don’t go to the restaurant that he just went from.

    So, I mean, it was sad.

  • William Brangham:

    Public health officials say these prejudices and fears conspire with poverty and lack of health care to keep America’s HIV epidemic alive and well in the South.

    It’s estimated that more than half of all undiagnosed HIV cases are in the southern U.S. More than half of all new diagnoses occur in the South. Including D.C., eight of the top 10 states with the highest new diagnoses are here as well.

    And Timothy Dean says, people just don’t want to talk about it

  • Timothy “Tad” Dean:

    It’s not out there. The messages are not on the billboards. They’re not on the bus stops. There’s no message here.

  • William Brangham:

    After five years of silence, Dean decided to, as he puts it, live positive, tattooing the words on his arm, and speaking out publicly.

  • Timothy “Tad” Dean:

    I woke up one morning, I’m like, ‘Dude, better do something. There are kids out there who are putting themselves in danger, putting their self at risk. So, how can I use this as my platform?

    Four columns for four girls.

  • William Brangham:

    Today, Dean works two jobs. He coaches young women in poise and technique for beauty pageants. And, for his day job, he also coaches newly diagnosed HIV-positive people at the local department of health.

    We weren’t allowed to film there, and none of his clients were open to talking with us. Still too much fear, Dean says.

  • Timothy “Tad” Dean:

    They’re afraid they’re not going to be loved, they’re not going to be cared for by their families and their friends. They’re scared their friends are going to leave. A lot of our — a lot of people here that are positive don’t even come to care here. They will go out of town.

  • William Brangham:

    This fear has some very real consequences. Studies show that stigma and prejudice around HIV can lead to higher-risk behavior, which can increase the chance of infection and not taking medication regularly.

    Jon Cohen has covered HIV/AIDS around the world for “Science” magazine, and he was our partner on this series.

  • Jon Cohen:

    You know, we’re also in the Bible Belt. There’s a really strong…

  • William Brangham:

    People don’t think of Florida that way, but…

  • Jon Cohen:

    But, certainly, regions we have already seen that aren’t that far from Miami, very religious. And that influences the way people respond to the groups who are at risk. Let’s take gay men, you know? And so that makes people afraid to simply go get an HIV test, because they’re worried that somebody at the clinic’s going to say, ‘Hey, you know, your son came in for a test. What’s up here?’ You know?

  • William Brangham:

    Or you sidle up to someone at the pharmacy and they see what you’re getting, and…

  • Jon Cohen:

    Exactly. You don’t even want to go get your drugs at your town pharmacy. All of that makes it a really dangerous place, in many ways, for somebody living with HIV.

  • Susan:

    You know, it’s like we’re on a desert island, you know, a deserted island. And, unless you are HIV, you have no clue on what we’re dealing with.

  • William Brangham:

    This woman is HIV-positive, and lives in north-central Florida. She asked we not reveal her identity. We will call her Susan.

    She’s struggled with her meds and making it to the doctor an hour away. But what’s hardest, she says, is the silence and the judgment. After Susan found out her status, even her husband said, ‘Don’t tell anyone.’

  • Susan:

    Every visit, the doctor’s saying, tell your children. And my husband, all the way home, arguing, ‘I’m telling you, don’t tell them. You will be sorry, because they will treat you different. They will be different toward you.’ And I said no.

  • William Brangham:

    Susan eventually did tell her kids, and she later found her way to this support group. It’s all HIV-positive women, called Let’s Talk About It. And it’s run by the nonprofit Rural Women’s Health Project.

    It’s the only group of its kind for 15 counties. That’s a huge swath of north-central Florida.

  • Marvene Edwards:

    We have come through some things together, some real serious things together.

  • William Brangham:

    If you spend time with this group, the first thing you realize is that HIV still hangs over each of them like a Scarlet letter.

  • Angela Pretto:

    You tell someone you have cancer, and they’re so sympathetic with you. But you say you have HIV, and that’s a whole different ball game.

  • Susan:

    They think we’re either — we’re sluts or we’re drug users. You know, when they find out you’re HIV, first thing they want to know is: how did you get HIV? What did you do wrong?

  • William Brangham:

    They say it’s like the U.S. hasn’t moved past decades-old misconceptions.

  • Natalie Davis-Douglas:

    Its still going on. It’s 2018, guys. What’s the problem? What’s the situation? What’s the issues? Why is this problem so deep in the South? Why are we still having this problem?

    It all goes back to the stigma, when people didn’t know about the disease.

  • Robin Lewy:

    When the women talk about education, they really mean it, because they live it.

  • William Brangham:

    Robin Lewy runs the Rural Women’s Health Project. She says even misunderstandings about how HIV is transmitted increases the women’s sense of isolation.

  • Robin Lewy:

    If you want an example of stigma, it’s women who have to sit down with their family, and those who are living with HIV eat off of a paper plate.

  • William Brangham:

    Wait, everyone else has a regular plate?

  • Robin Lewy:

    Everybody else is eating with a regular plate. They’re eating off of a paper plate.

    That’s stigma. We have had women that talk to us about — in their own homes — the rest of the family going in and spraying bleach on their toilet after she has used the bathroom.

  • William Brangham:

    In this day and age?

  • Robin Lewy:

    2018.

  • William Brangham:

    The women say there’s plenty of blame to go around: lack of education, religious intolerance, racism, even resistance from local health officials.

    When Angela Pretto tried to start an earlier support group at her church, a county health department intervened, telling her not to mention HIV in any of her flyers. No telling what the neighbors might do.

  • Angela Pretto:

    They were afraid they were going to come and burn the church down. So I had to change the name to the STEP Club, like an exercise group or something.

    We have to break the stigma. And this is the face of HIV.

  • Man:

    That’s right. And it’s a great face.

  • Angela Pretto:

    Thank you.

  • William Brangham:

    Marvene Edwards says getting past all of this will mean people like her speaking out and overcoming their own internal stigma. She spent years wondering: Why me?

  • Marvene Edwards:

    You come to a point in your life when you say, why not?

  • William Brangham:

    Really?

  • Marvene Edwards:

    Why not me? You know, that’s when you have gotten to the point where you’re OK in your own skin. And you got to get to that point, where you don’t care about what other people say or think, because they’re going to say and think what they want to anyway.

    I will not allow what another person thinks dictate to me the woman that I am. Because I’m bigger than HIV. It lives in my house.

  • William Brangham:

    Back in the Florida Keys, Jason Barth says, nearly two decades on, he’s mostly at peace with his own HIV diagnosis.

  • Jason Barth:

    I don’t want to be defined by it. I don’t want that to be the one thing that people define me by.

  • William Brangham:

    He’s now on top-notch HIV medication. The virus inside: undetectable. But Jason still has a lab report he got back in 1996, one that shows how very close he came to death. HIV had destroyed nearly all his immune cells.

    Why did you keep this? Most people throw their lab reports out.

  • Jason Barth:

    A reminder of where I was and how low I was at the time. To keep me appreciating what I have now.

  • William Brangham:

    The rural South has struggled responding to its epidemic, and has often been less than hospitable to those living with HIV. But Jason Barth is a reminder that, no matter how bad things get, circumstances can change.

    For the “PBS NewsHour,” I’m William Brangham in the Florida Keys.

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