Mark Pawsey is a board member for the LGBT+ Center Orlando and a live entertainment producer throughout Central Florida. He is also a long-term survivor of HIV.
“I contracted HIV in 1985 at the age of 20,” he says. “At that time it wasn’t called HIV but HTLV-3.”
Pawsey, who is British, was living in London at the time and while attending drama school he felt ill and developed a fever.
“What it turned out to be that is when I was seroconverting to HIV,” Pawsey says. “I didn’t get better, then was sent to the Department for Tropical Diseases and they kept asking me questions about whether I had been to Africa.”
After being tested on three separate occasions by three different doctors without him even knowing what he was being tested for, Pawsey was told he tested positive for HTLV-3 and should prepare for his last Christmas.
Pawsey is now 56 years old and on antiretroviral therapy. As most long-term survivors, he has not only had to be more health conscious than most but he is very much aware of how devastating a pandemic can be having been on the frontlines of the HIV/AIDS pandemic of the ‘80s and ‘90s. Which is why when a new pandemic was making its way around the world in 2020, he went into crisis mode.
“I was paranoid about getting COVID,” he says. “I had pneumonia two years ago and my chest was always the thing that freaked me out. I didn’t go anywhere if I didn’t have to, I wore my mask all the time, everyone at work got vaccinated once they were available, I got vaccinated.”
In July, while running a board meeting, Pawsey started to feel weak and tired.
“I told them I had to go lay down, so I laid down and slept in the same place for an hour, no one could wake me,” he says. “Then decided to go home and go to bed because I wasn’t feeling well. I booked a COVID test, this was a Tuesday, I booked one for that Thursday, but I didn’t think it was COVID because I had my taste and my smell, plus I had been vaccinated and everything.”
The test came back positive for COVID. Pawsey had a breakthrough infection.
“Somehow I caught it, and then it went from zero to one hundred really quickly,” he says. “I talked to my HIV doctor that I have here and put a plan together that if I deteriorated, I should go to the ER.”
By that Friday, Pawsey was so ill he could barely pick himself up off the floor and was having difficulty breathing.
“I thought ‘should I call an ambulance?’ but I drove myself to the hospital. I don’t remember where I parked my car,” he recalls. “I remember crossing some field and then I couldn’t breathe. When I arrived at the ER, I remember being put in a wheelchair. They thought I was having a heart attack. As they took me to get an EKG, I remember telling everyone ‘I’m positive.’”
How and if COVID-19 effects people living with HIV differently is unknown right now. Last July, scientists, doctors and politicians from around the world gathered at the International AIDS Society Conference on HIV Science where the topic of studies on COVID-19 and its impact on those living with HIV took centerstage. The results were inconclusive.
What is conclusive is COVID vaccines are the most effective way to prevent a COVID-19 infection, says Dr. Luke Johnsen, medical director for Metro Inclusive Health in Tampa Bay, but adds that no vaccine is 100% effective.
“If you are someone who is living with HIV – when it comes to COVID, number one get the vaccine, but also don’t neglect your preventive health care,” he says. “The most important thing is for people to keep up with their medical care like getting the flu vaccine or pneumonia vaccine, get these vaccines when you are due for them, because if you were to contract COVID those things are going to help you and you don’t want to get COVID and the flu. Practice good general maintenance.”
Johnsen emphasizes that even in the middle of a pandemic, anyone living with HIV should still be continuing their medical care.
“I think what has been observed is people have delayed going to their doctor,” Johnsen says. “Because of the pandemic, people had barriers in their way and some of them weren’t seeing their doctor, and for some telecare wasn’t available. Some weren’t going and having their labs done. It is vital to continue with care. The issue of immunosuppression in people living with HIV and COVID is an unsettled one because there are a lot of variables. Not everybody who is living with HIV is immunosuppressed in the same way as the next person.”
Johnsen goes on to say that those living with HIV, who are on antiretrovirals, that have a good CD4 count and are undetectable, that haven’t had AIDS-related infection in the last year or so show no evidence that they are any higher risk then others who have gotten COVID.
“What is likely to effect you when it come to COVID is other health problems like heart disease, high blood pressure, obesity, lung disease, chronic kidney disease,” Johnsen says. “Another thing that plays a big factor is age. COVID is more concerning if you are living with HIV and of advanced age.”
With several COVID vaccines available in the U.S. and nearly 60% of the population being fully vaccinated, the conversation has shifted to a third dose of the vaccination and the groups who should be getting them.
“There are two categories basically, people who are severely immunosuppressed need that third dose of that vaccine — a third dose is different than the booster,” Johnsen says. “Someone living with HIV but does not have advanced HIV, they are on medication and their CD4 count is good, don’t fall into the high-risk category for a third dose.”
As for the booster, the Centers for Disease Control and Prevention is recommending it six months after the original series of shots for individuals who received a Pfizer-BioNTech or Moderna COVID-19 vaccine, who are over 18. For those who received the Johnson & Johnson COVID-19 vaccine, booster shots are also recommended for those who are 18 and older and who were vaccinated two or more months ago. The CDC is continuing to encourage the 47 million adults who are not yet vaccinated to get vaccinated as soon as possible.
The U.S. Food and Drug Administration announced it was authorizing the expansion of boosters to all adults Nov. 19.
“The vaccine declines over time, it’s like the flu vaccine in that way,” Johnsen says. “It is great for the first six months but then it starts to be reduced. That is true whether you have HIV or not. But I think you should definitely get the booster if you are older than 50 or if you have other health problems that make you more susceptible to COVID.”
Johnsen emphasizes that if you are living with HIV, even if you are completely immunized, continue to maintain precautions.
“Wear masks, don’t go to big, crowded events,” he says. “And keep your doctor appointments, get your blood work done, get your labs. With many people working from home during the pandemic, they lost that routine they normally had which reflects in a decrease amount of compliance to their medication. You know, maybe they were taking their pill in the morning before they went to work and now they are working from home, that routine has changed and now they forget to take it. So make sure if you are one of these people that you find ways to adjust.”
When it comes to COVID, another thing Johnsen would like everyone to do, whether they are living with HIV or not, is listen to the science.
“This is a new virus for everybody and I think what we know about the virus, what we know about the treatments, what we know about the vaccinations evolves very rapidly,” he says. “I think what people perceive as deceitful information is just evolving information, and that makes it easy for people who have an agenda to utilize it to undermine other people’s care. And I think particularly in the HIV community there is a history there. If we go back to the beginning of the HIV epidemic, people believed that the medications killed people, AZT killed people. Well, that wasn’t true, but when people are living in a state of fear and there is little information, and there isn’t much available about COVID, it is a fertile ground for misinformation.”
That misinformation brings a stigma to those who become infected during a pandemic. Something Pawsey experienced when he became HIV-positive and again when he was told he had COVID-19.
“It was really rough because they sat me in the emergency room, and there were people all around me, and I was positive with COVID and everyone who walked by me I would have to say ‘I’m positive with COVID,’ and they would run a way,” Pawsey recalls. “It was just like it was 37 years ago. I remember having sex with somebody and I told them I am positive and he put his clothes right back on and left. I lost friendships over it and everything. It was rough to have to revisit that.”
Pawsey was diagnosed with COVID pneumonia but was able to avoid being admitted to the ICU. Two weeks later he tested negative, and while he is better now, saying his HIV numbers are better than they have ever been, he is still dealing with lingering symptoms, often referred to as “long COVID.”
“I’ve lived with [PTSD] my whole life. When I was first diagnosed [with HIV] everyone around me was dying. I know the guy who gave it to me, I had to tell him and he had no idea and nine months later he was dead. You look at what happened to him and it’s the same virus, so why did it take him but not me?” he says. “Same thing with COVID, people in the same family, some of them get it and then others in the same house don’t. It’s like Russian Roulette. Until they get it and struggle with it, people are just blind to it.”
