What It’s Like to Be HIV Positive During the COVID-19 Pandemic

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What It’s Like to Be HIV Positive During the COVID-19 Pandemic

Reese Piper

"The fear of catching a disease from someone is back."

For continuing coverage of how COVID-19 is affecting reproductive health, check out our Special Report.  

For many people, COVID-19 is the first pandemic that has uprooted their lives. But for long-term survivors of HIV/AIDS, the coronavirus is bringing back painful memories of the HIV/AIDS epidemic in the United States.

While the two illnesses are incredibly different in comparison—COVID-19 is easier to catch, while AIDS was far more deadly before antiretrovirals became available in the mid-1990s—the Trump administration’s flippant attitude toward the virus’ threat mirrors the lack of government action in the early 1980s during the AIDS crisis.

Bruce Ward, who’s been living with HIV since the ’80s while working on the frontlines of the epidemic, said the COVID-19 outbreak feels eerily familiar. At first, Trump dismissed the seriousness of it, Ward said. “Of course, it was worse back then,” he said. “Reagan didn’t even speak about AIDS until tens of thousands of people were dead. Now at least the government is doing something about it, but Trump’s reaction has been horrible.” From 1986 to 1988, Ward was the director of the Centers for Disease Control and Prevention’s National AIDS Hotline.

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When Ward got pneumonia two weeks ago, he tested negative for COVID-19. According to the charity organization Avert, a global resource guide for HIV and AIDS, people living with HIV who are treated with antiretrovirals are not at an increased risk of developing severe symptoms from the coronavirus. But people living with HIV are more likely to develop diabetes, a condition that puts them higher at risk for severe illness from COVID-19. Ward is confident that his strict cocktail of ten pills a day will keep him healthy, but that hasn’t stopped COVID-19 from stirring up old feelings and memories.

“There is also the same sense that certain populations are disposable,” Ward said. “Back then it was gay people, heroin users, and sex workers. And now it’s the elderly. There’s an assumption that it’s OK if people over 70 die.”

Rewire.News spoke with Ward about the similarities and differences he’s seeing between the HIV/AIDS pandemic and COVID-19. The following interview has been lightly edited for clarity.

Name: Bruce Ward
Age: 62
Location: Manhattan, New York
Occupation: Freelance writer and actor

When were you diagnosed with HIV?

There was no virus detection test until 1985, but I acquired it ’84. I’m one of the rare people who knows exactly when I got it. I had already been working in the AIDS field as a hotline worker, and I was very safe. But I had one unsafe encounter while I was in Hawaii, and a few weeks later I came down with horrible flu-like symptoms.

When I tested positive two years later, I wasn’t shocked. I expected it, but I was shocked by how low my T cells (immune cells that protect the body from pathogens) were. They were very low. I was 28.

Are you worried about your health during this time? 

My doctor is amazing. All of his patients are HIV positive. When I had pneumonia a few weeks ago, I had to go into his office. He gave me an IV drip for five days. He told me that none of his patients have died so far, because he keeps them out of the hospital. He said: “Once you’re in the hospital, forget it, that’s when you catch things.”

And if you’re HIV positive, they stick you in a different ward and it’s impossible to get help, so he said whatever you do stay out of the hospital, obviously unless you can’t breathe.

You take a cocktail now and that’s become routine? How worried are you about running into difficulties accessing medication?

It’s been routine some way or another since I started medication in ‘88. I’ve never been without taking pills in the morning. In the last ten years or 15 years, I’ve been on the same regime, which is called salvage therapy, which is basically like I’ve done everything else. So, I have to take a lot of pills. A lot of people, even long-term survivors, are only taking one pill a day, but I take three different medications: five pills in the morning, five at night.

And I have other medications that go along with it. I’ve had a heart attack, so I take Lipitor and baby aspirin. I have diabetes. I’m sort of a checklist—a poster boy for long-term survivors in terms of what can happen—because I’ve gotten every diagnosis that comes with HIV: diabetes, bone loss (I’ve had both of my hips replaced), numbness in my toes. Perhaps it’s a consequence of the virus or the medication we took back in the day.

I haven’t had any issues reordering my medication. I’m not too worried because pharmacies and medication are a priority. I was able to keep private insurance that I got years ago, and the state has a program called AdaptHealth that pays my premium. I’m also on disability, and I have Medicare through that. Whatever Medicare doesn’t cover, my private insurance covers. I’m very lucky that I’m able to keep on top of my medications, my pills, my insurances. It’s a full-time job. There isn’t a lot of support if you can’t keep on top of it.

How has COVID-19 reminded you of the early days of the AIDS crisis? 

It’s bringing up memories of feeling like a leper. In the early days of the AIDS crisis, I’d go on dates, and guys would leave as soon as I told them I’m positive. A guy made me dinner one night and when I told him, he was furious at me because I didn’t say anything before. But we didn’t even kiss; we didn’t do anything. We were just talking.

The fear of catching a disease from someone is back. A couple of weeks ago, for example, I started wearing masks before everyone was wearing them. As soon as people saw me, they crossed the street to avoid me because they assumed that I must have the virus if I’m covering my face.

It reminded me of when everyone was afraid of each other back then. But I don’t feel as stigmatized as I did in the AIDS pandemic because we’re all going through it together, and there’s comfort in that. I don’t have to feel shame for staying home or wearing a mask.

I was in Virginia when it got serious in New York. I received a stream of text messages from my friends. At first I was like, is this really happening? Once I got back to New York, I took it very seriously. I was seeing someone casually who asked me to hang out. When I said no, he texted me, saying, “Are you one of those people who is being overly paranoid?” I explained how I wasn’t being paranoid and declined to meet up with him.

There are still people meeting up on dating sites. They either aren’t grasping the severity of it or aren’t taking responsibility for the health and well-being of more vulnerable people.

Was there a similar wave of denial at the beginning of the AIDS crisis? 

In the gay community, yes. Larry Kramer, who was an author and playwright, sounded the alarm but no one wanted to listen. It was only 12 years after Stonewall, and there was a sexual decade in the ’70s, and gay men didn’t want to give that up. People thought Larry Kramer was stifling their sex lives, but once people started to die, the community took it more seriously.

As a survivor of the AIDS epidemic, what advice can you give people right now?

Get the facts. Then deal with facts—not feelings. Do what you feel you can do to stay in control.

The reason I got involved with the hotline is that I believed that if I worked hard enough, then I’m gonna beat this thing. Fear comes in when people feel they don’t have control. It’s easier to catch coronavirus than HIV, but you can take simple steps—like washing your hands, wearing gloves and masks, and distancing yourself from people—to protect yourself.