Why Men In Mississippi Are Still Dying Of AIDS, Despite Existing Treatments

Feb 14, 2019
Originally published on February 14, 2019 10:15 pm
Copyright 2019 NPR. To see more, visit https://www.npr.org.

AUDIE CORNISH, HOST:

President Trump set an ambitious goal during last week's State Of The Union address.

(SOUNDBITE OF 2019 STATE OF THE UNION ADDRESS)

PRESIDENT DONALD TRUMP: To eliminate the HIV epidemic in the United States within 10 years.

CORNISH: Many public health experts say that goal is achievable. The medicines to prevent and treat HIV already exist.

MARY LOUISE KELLY, HOST:

The road to ending HIV in America runs through the Deep South, where gay and bisexual black men make up a disproportionate share of people with HIV. In 2017, more than half of the new HIV diagnoses in the U.S. were in southern states. Our co-host Ari Shapiro is in Jackson, Miss., a city with one of the highest HIV rates in the country.

ARI SHAPIRO, BYLINE: Shawn Esco has the kind of story I haven't heard from gay men in decades - about friends and lovers with AIDS dying all around him. He's 37 and lives in an apartment with an affectionate pitbull named Nibbler.

What's your name?

SHAWN ESCO: [That's] Nibbler.

SHAPIRO: Eleven years ago, Esco went to get a routine HIV test, and the clinic workers invited him into a private room for the results.

ESCO: When they opened the door, there was all this new literature that said HIV this, AIDS that. And it was just - you could tell it was there for me.

SHAPIRO: Echo's best friend from high school died a few years later.

ESCO: He never made it to 30.

SHAPIRO: This was in 2011, after a good HIV treatments were available.

ESCO: I was extremely pissed off at him because it could have been avoided. All he had to do was want to live.

SHAPIRO: And he was just one among many people in Esco's life who died because of AIDS. According to the Centers for Disease Control and Prevention, about half of all gay and bisexual black men in the U.S. will get HIV at current infection rates - 50 percent.

How hopeful are you that a decade or a generation from now, a gay African-American 37-year-old man living in Jackson, Miss., will not have to go through losing friends and exes and people they love dying to AIDS?

ESCO: Given the way that things are now, that's not going to happen.

SHAPIRO: The way that things are now. He's talking about stigma, fear, homophobia, racism.

LEANDRO MENA: Thank you for coming to Mississippi. I think, you know, it's important.

SHAPIRO: Leandro Mena is an HIV doctor at the University of Mississippi, and he works with an AIDS organization called My Brother's Keeper.

How does it make you feel as a doctor to see people dying of a disease that is preventable and treatable?

MENA: It's heartbreaking. I mean, science has given us you, know, the tools, you know, to end the HIV epidemic. The challenge that we have is that we need to make sure those tools can reach those who actually need it most.

SHAPIRO: Which is poor people, people of color, disenfranchised people.

MENA: Young people, sadly, yes.

SHAPIRO: Many of those people looking for a safe haven wind up on the doorstep of Grace House.

CATHERINE SULLIVAN: It was a hospice originally.

SHAPIRO: Catherine Sullivan runs the place - a cluster of homes with a shared backyard and a garden. She takes us to a memorial grove where statues of angels stand around the base of a tree.

SULLIVAN: There are ashes of more than 45 people in there from over the years, some of whom families wouldn't pick them up from the morgue. And so we buried them.

SHAPIRO: Just four months ago, a Grace House resident died of AIDS-related illness. Donna (ph) spent her life struggling to live openly as a transgender woman. Catherine Sullivan pulls out her phone to show us a photo. Donna lives peacefully in a coffin, impeccably made-up in a long white gown.

SULLIVAN: There, oh, my God. So it makes me really sad because in death who she was is honored in a way that got lost in life most of the time.

SHAPIRO: Others at Grace House are fighting some of the same challenges - to live free of shame, to get access to care.

JEREMY: This is my room. Sorry it looks a mess.

SHAPIRO: Jeremy is 32 and got HIV from his college boyfriend. We're only using his first name because coming out as positive can still get you fired from your job around here, even though technically that's illegal. Jeremy grew up in rural Mississippi.

JEREMY: Certain areas you, like, you have to drive like an hour or two or three for quality care.

SHAPIRO: Jeremy got HIV before there was a daily pill to prevent infection. That pill is known as PrEP, Pre-Exposure Prophylaxis. A lot of gay and bisexual men in the South are not on PrEP, either because they don't know it exists or because they can't afford it. It can cost up to $1,600 a month without insurance. Condoms are cheaper and effective, but people don't always use them. Mississippi is the poorest state in the country, and it has fought against expanding Medicaid, which could have given more people access to HIV treatment.

JEREMY: You know, HIV medicine or treatment is very expensive.

SHAPIRO: And Jeremy mentioned another issue that makes it hard for young gay and bisexual black men to protect their sexual health. He was raised in a church that tried to convert gay people. Shame was part of his daily life.

JEREMY: The words that people say, they linger. They linger on for years. And you just - it was like a repeated broken record over and over again. You know, you're not good enough. You're never going to have anybody. No one is going to love you because you have this disease. I was just carrying it, you know, like it's a garment, like all of my shame and stuff.

SHAPIRO: Today, a daily HIV treatment pill has made his viral load undetectable, so it's extremely unlikely that he could infect anyone else. If ending the HIV epidemic requires fighting stigma, advocates fear that Mississippi is moving in the opposite direction. A couple of years ago, the state passed a law that allows doctors to refuse to serve patients based on religious beliefs, including anti-gay beliefs. While there's no public evidence of a doctor refusing to treat a patient yet, critics fear that it could prevent people from seeking care in the first place. I met one of the Republican sponsors of the bill, Representative Dan Eubanks, under the soaring dome of the state capitol building in Jackson.

DAN EUBANKS: I think it's reaching to try and say that this bill is going to make it worse for people with AIDS because that was never the intention of the bill. The intention of the bill was to protect people's First Amendment right to adhere to the tenets of the faith, which is guaranteed in our Constitution.

SHAPIRO: Eubanks believes that ending HIV requires education, including abstinence education and also personal responsibility.

EUBANKS: If you know that participating in unprotected sex is dangerous, but yet you do nothing to try and alleviate that, you greatly increased your odds and chances of contracting a disease. So there's a certain amount of personal responsibility, and that has nothing to do with sexual preference.

SHAPIRO: Tougaloo College is a historically black school that has been standing on this land since 1869. There's a big sweeping green lawn with live oak trees dripping with Spanish moss, and the mobile testing clinic for Open Arms is rolling in. It's a big blue trailer. They're going to be giving HIV tests to students who stop by.

DeAndre Steward is a 20-year-old sophomore. He's gay, and he just got tested.

Jackson has one of the highest rates of HIV in the country.

DEANDRE STEWARD: I am aware. I know. And it is honestly very scary. And it's like, we're all sexual creatures, so we're going to have sex.

SHAPIRO: I asked him the same question I put to everyone, and I was surprised by his answer.

Do you think it's possible for your generation to get past the AIDS epidemic in a way that older generations have not been able to?

STEWARD: Absolutely. The older generations, they still weren't as educated on AIDS. You know, their minds aren't that open, our generation's minds are.

SHAPIRO: DeAndre Steward was the first truly optimistic gay black man I met in Mississippi. His test results came back - HIV negative. He plans to stay that way. I asked if he's on PrEP, the daily pill that can prevent infection, and he said he would like to be, but it costs too much.

KELLY: That's OUR ALL THINGS CONSIDERED co-host Ari Shapiro reporting this week from Jackson, Miss., along with producer Dave Blanchard. Transcript provided by NPR, Copyright NPR.