Though Not A Death Sentence, HIV/AIDS Still Holds A Powerful Stigma

Aug 16, 2015
Originally published on August 18, 2015 1:47 pm

Indiana was hit with an outbreak of HIV/AIDS this spring, and it got a lot of attention because it is so exceptional.

Our perception of HIV/AIDS has changed since the disease emerged in the early 1980s. There are all kinds of treatments and resources — things that simply didn't exist when the epidemic began.

In the U.S., an estimated 1.2 million people are living with HIV, according to the CDC. New infections are down from the peak in the 1980s, but the epidemic is nowhere near over. HIV/AIDS has affected millions of people around the world. In this country, gay men have been hardest hit.

Today on For the Record: HIV then and now. Two survivors, from two different generations, tell their stories. Click the audio link on this page to listen to the full conversation.

Mark King

In West Hollywood, in the 1980s, King was struggling to become an actor, but his career dreams were sidelined by a deadly disease.

"People were disappearing," King says. "A bartender would be there one weekend and was gone the next. And if you saw somebody at the supermarket that you hadn't seen in months, you were, 'Oh, thank God! You're still alive!' It was just this fellowship of grief and tragedy and mortality."

As a gay man, King watched many of his friends suffer through AIDS. He decided he had to get tested.

"I was diagnosed in 1985, the week the HIV test became publicly available," he says.

But an HIV diagnosis could mean getting kicked out of an apartment, losing friends, losing a job. King didn't want an HIV test on his record, so he snuck into a clinic where a friend gave him the test in secret.

"And it was at least two weeks later that he called me at home, and said, 'I'm sorry to tell you, your results came back positive, and I'm really sorry.' " King says. "That was all he could really say."

He began living life in two-year increments, he says, "because I knew that that was about the amount of time it would take for it to kill me. And again, no medications of any kind. It was a waiting game."

Years went by, and King never planned for his future. Instead, he spent much of his time taking care of friends who were dying. Finally, more than a decade after his diagnosis, a breakthrough: A class of antiretroviral drugs called protease inhibitors went on the market.

"And suddenly, we were literally getting up out of our death beds, those of us who were that sick, and eating again, and getting healthy," he says. "It absolutely is the line of demarcation, 1996. Before was death and mortality, and after was real hope that people living with HIV can live completely long, fulfilling, engaged lives."

King worked for an AIDS organization in Atlanta, and suddenly he was helping people figure out what to do with the decades of life they thought they wouldn't have.

"How do you say in a job interview, 'Well, I had a touch of the AIDS for a few years, but I'm feeling better and now I'd like to work again,' " he says. "And relationships: It turns out that the partner you wanted to die with may not be the partner you want to live with. More than one person came down to the breakfast table and looked his partner in the eye, and said, 'You know what? I'm going to live another 20 years, and not with you.' "

Guy Anthony

An HIV diagnosis today looks very different than it did in 1985. It's not a death sentence. People are better educated about the disease, treatment options are more effective and easier to access.

Guy Anthony was diagnosed in 2007.

"I often tell people I'm spoiled, living in D.C.," says the now 29-year-old Anthony. "You can walk by and see a Truvada [ad], which is an antiretroviral, you'll see a billboard for that. Or you'll see a poster that says, 'God still loves me,' and it has an HIV advocate there."

King was diagnosed with HIV 20 years before Anthony — but in some ways, King says, younger generations have had a tougher time.

"It's my firm belief that as medications have improved, and as the lives of those of us with HIV have improved, social stigma has risen," King says. "In the early years, we were doing everything we could just to help the dying, and there was no time to point fingers or blame or judge people ...

"Now, if you were to test positive today, how did that happen? What a disappointment you are. Why weren't you listening to all these prevention messages that we've been giving you all these years? You must be a terrible person."

That rings true for Anthony.

"I was more so afraid of the stigma attached to the disease than the actual disease," he says. "You know, because every day I have to sort of wake up and deal with the fact that I am a black gay man in America. And that's difficult in itself. So, to add, HIV positive serostatus onto that, it can be a lot."

He has learned how to manage the social and medical aspects of his diagnosis, but it has taken a toll on his personal life.

"Not that I'm not an amazing person, but there are some people that will simply not date me because I'm HIV positive," he says.

After trying several different treatments, he found a drug that works.

"For the first month, I may have had a few side effects, maybe, like, a headache every morning and some nausea," Anthony says. "But after three weeks: easy, smooth sailing."

But the fact that HIV can now be managed is not something Anthony or King take for granted. Anthony has turned this disease into a career, mentoring other black gay men with HIV.

King also works as an HIV advocate, counseling those who are newly diagnosed and those who've been living with HIV since the epidemic began.

"I am now twice the age of many of my friends who died," he says. "To see that potential snuffed out so soon, it makes me realize: Am I doing enough? Am I productive enough? What have I done today? Because I see time as such a gift, and I just want to make the most of it."

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

RACHEL MARTIN, HOST:

This is WEEKEND EDITION from NPR News. I'm Rachel Martin.

(SOUNDBITE OF MUSIC)

MARTIN: And this is For the Record. We begin this morning with a number, 1.2 million. That's the number of people in this country living with HIV. New infections are down from the peak in the 1980s. But the epidemic is nowhere near over. A couple weeks ago, President Obama released an updated set of goals to combat HIV/AIDS.

(SOUNDBITE OF ARCHIVED RECORDING)

PRESIDENT BARACK OBAMA: Testing and access to the right treatment mean that being HIV-positive, once perhaps a death sentence, can still mean a chance at a healthy and productive life. But our work is far from finished.

MARTIN: Just this past spring, there was an HIV outbreak in Indiana.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED REPORTER: Spreading so fast, a team from the CDC is now involved. And the state's governor was forced to extend a health emergency declared last month.

MARTIN: That outbreak in Indiana got a lot of attention because it is so exceptional. Our perception of HIV/AIDS has changed over the years. There are all kinds of treatments and resources now, things that simply didn't exist in the 1980s, when the epidemic began. And while HIV/AIDS has affected millions of people around the world, in this country, gay men have been hardest hit. For the Record today, we hear from two generations of survivors - HIV then and now.

MARK KING: All I knew is pretty much what anyone new. And that was that there was this mysterious thing. And it was killing people, primarily gay men.

MARTIN: It was the 1980s in West Hollywood. Mark King was struggling to become an actor. But his career dreams were sidelined by a deadly disease.

KING: People were disappearing. A bartender would be there one weekend and was gone the next. And if you saw somebody at the supermarket that you hadn't seen in a few months, you were - oh, thank God; you're still alive. It was just this fellowship of grief and tragedy and mortality.

MARTIN: As a gay man, King watched many of his friends suffer through AIDS. He decided he had to get tested.

KING: I was diagnosed in 1985, the week the HIV test became publicly available.

MARTIN: But people didn't necessarily want to know their status. An HIV diagnosis could mean getting kicked out of your apartment, losing your friends, losing your job. Mark King didn't want an HIV test on his medical records. So he snuck into a clinic where his friend worked, and he took the test in secret.

KING: He drew my blood after hours and then told me he'd let me know. And it was at least two weeks later that he called me at home and said, I'm sorry to tell you, your results came back positive, and I'm really sorry. That was all he could really say. That was the extent of the phone call.

MARTIN: King started to reevaluate his life.

KING: I figured on any given morning I'd wake up, and there would be the lesion on my leg. I would see it in the shower or I would get a cough. And then, the countdown would begin. And so life was lived in two-year increments.

MARTIN: Why two-year increments?

KING: Because I knew that that was about the amount of time it would take for it to kill me - and again, no medications of any kind. And it was a waiting game.

MARTIN: Years went by. Mark King wasn't planning his own future. Instead, he spent much of his time taking care of friends who were dying. Finally, more than a decade after his diagnosis, there was a breakthrough. A class of antiretroviral drugs called protease inhibitors went on the market.

KING: And suddenly, we were getting - literally - getting up out of our deathbeds, those of us who were that sick, and eating again and getting healthy. And it absolutely is the line of demarcation, 1996. Before, it was death and mortality. And after, it was real hope that people living with HIV can live completely long, fulfilling, engaged lives.

MARTIN: But it was complicated because before this breakthrough, Mark King had been living as if he were dying.

KING: By that point, in 1996, those of us living with HIV had sold the life insurance policy, told the boss to go to hell, took a trip around the world, ran up the credit cards. And then, someone says to you, you're going to live. (Laughter). Well, that's a little frustrating. There was this strange sort of emotional whiplash going on.

MARTIN: Mark King worked for an AIDS organization that was all of a sudden helping people figure out what to do with the decades of life they thought they wouldn't have.

KING: How do you say in a job interview, well, I kind of had a touch of the AIDS for a few years. But I'm feeling better, and now I'd like to work again? And relationships - you know, it turns out that the partner you wanted to die with may not be the partner you want to live with. And more than one person came down to the breakfast table and looked his partner in the eye and said, you know what? I'm going to live another 20 years - and not with you.

MARTIN: King had that conversation with his own partner. He decided that since he was now going to be OK, he wanted to start over. And that meant ending the relationship.

(SOUNDBITE OF MUSIC)

MARTIN: Today, an HIV diagnosis looks very different than it did in 1985.

GUY ANTHONY: My name is Guy Anthony. I am 29 years young. I was diagnosed in 2007, but I was infected in 2005.

MARTIN: And when Anthony was diagnosed, he knew that HIV didn't have to be a death sentence. People are better educated about the disease now. Treatment options are more effective and easier to access.

ANTHONY: I often tell people, I'm spoiled living in D.C. You can walk by and see a Truvada - which is an antiretroviral - you will see a billboard for that. Or you'll see a poster, you know, that says, God still loves me. And it has, like, you know, an HIV advocate there.

MARTIN: Although, seeing an HIV survivor on a billboard is different from having a real network of people your own age who understand.

ANTHONY: I hadn't really met anybody my age that was living with HIV. Everyone that I knew, they were over 40, over 50, with this disease. So I did know that I could live. But I didn't know anybody my age at the time that was actually doing it.

MARTIN: Mark King was diagnosed with HIV 20 years before Guy Anthony. But in some ways, King says younger generations have a tougher time.

KING: It's my firm belief that as medications have improved and as the lives of those of us with HIV have improved, social stigma has risen. In the early years, we were doing everything we could just to help the dying. And there was no time to point fingers or blame or judge people. We were simply - we were in a battlefield. And we were helping as best we could. Now if you were to test positive today, how did that happen? What a disappointment you are. Why weren't you listening to all of these prevention messages that we have been giving you all of these years? You must be a terrible person. And so social stigma has not lessened.

MARTIN: That rings true for 29-year-old Guy Anthony.

ANTHONY: I was more so afraid of the stigma attached to the disease than the actual disease, you know, because every day I have to sort of wake up and deal with the fact that I am a black, gay man in America. And that's difficult in itself. So to add HIV positive serostatus onto that, it can be a lot.

MARTIN: And it's taken its toll on his personal life.

ANTHONY: Not that I'm not an amazing person. But there are some people that will simply not date me because I'm HIV-positive.

MARTIN: Guy Anthony has learned how to manage the social and the medical aspects of his diagnosis.

ANTHONY: So I have a team of doctors making sure that I'm OK. So I have my primary care physician. I have my infectious disease doctor. I have a psychiatrist. And I have a therapist.

MARTIN: And after trying several different treatments, he found a drug that works.

ANTHONY: For the first month, I may have had a few side effects - maybe, like, a headache every morning and some nausea - but after three weeks, easy, smooth sailing.

MARTIN: But the fact that HIV can now be managed is not something Guy Anthony or Mark King take for granted. Anthony has turned this disease into a career. He mentors other black gay men with HIV. Mark King also works as an HIV advocate, helping counsel those who are newly diagnosed and those who have been living with HIV since the epidemic began more than a generation ago.

KING: I am now twice the age of many of my friends who died. And to see that potential snuffed out so soon, it makes me realize, am I doing enough? Am I productive enough? What have I done today? Because I see time as such a gift, and I just want to make the most of it.

MARTIN: HIV survivors Mark King and Guy Anthony. Transcript provided by NPR, Copyright NPR.