HIV Aids

People Living With HIV Get Involved in COVID-19 Vaccine Trials

After the past year of pandemic looniness, the COVID-19 vaccines are finally bringing a measure of hope. For some, questions on their safety remain, despite evidence otherwise. And, for people with HIV, there are questions about interactions with HIV meds. And, of course, with all the documented short-term side effects—fever, nausea, fatigue, muscle and joint ache—is it worth it?

These questions have been going through my mind, especially in the past weeks and months as the vaccines have been rolling out throughout the country. Vaccine trials to combat coronavirus were first announced in March 2020, very soon after the virus started to take hold in the U.S. and much of the country was put on lockdown. For me, this was incredibly soon and seemed rather reckless.

Two men in the HIV community stepped up when talk of the coronavirus vaccines started being touted on television and social media, bravely deciding to take part in the vaccine trials. All the major pharmaceutical companies with potential COVID-19 vaccines were actively seeking volunteers for the studies.

The national director of the Prevention Access Campaign, Murray Penner, came forward to take part in a coronavirus vaccine trial. “I was actually part of the advocacy to make sure that people living with HIV were included in the trials, because early on, they weren’t. We weren’t,” Penner said. Once all the drug companies with COVID-19 vaccines in development responded to the push to get people living with HIV included, agreeing to activists’ demands in late summer 2020, Penner thought that since he’d worked to get us included, he should sign up to be in a trial himself. He signed up on a website as a volunteer.

Penner received a call about a month later for basic screening to make sure he met the entry requirements for the blind study. When he was called for the second screening, as soon as he mentioned he was living with HIV, Penner was told he wasn’t eligible. “And I said, ‘Yes I am!’ and they said, ‘No you’re not, since people living with HIV are taking immunosuppressants,’ and I said, ‘People living with HIV don’t take immunosuppressants—we take antiretrovirals to suppress the virus (HIV), not our immune system.’” After battling a bit more and talking to the medical director of the study, Penner was accepted into the trial for the Moderna vaccine.

The first visit, he thought he was going in to fill out forms and learn about details of the trial. “I went in, and they just went, ‘OK, now it’s time to give you the shot,’ and I was like, ‘Oh, shit! OK!’” Because it was a blind study, Penner didn’t know if he was given an actual vaccine or a placebo. “The first shot, I had some soreness in my arm, like a flu shot, and a little fatigue.” The second dose gave him a bit more trouble. “I couldn’t get out of bed, severe fatigue,” he said, “and my muscles just ached, especially my joints.” At that point, he was pretty sure he’d received the actual vaccine.

As part of the follow-up, Penner was checking in with a diary on his phone as well as getting phone calls from the research team. Once the vaccine was approved for distribution, Penner was contacted and told that he could be taken off blind, informed whether he received the vaccine or not, and, if not, offered the shot. He found out on New Year’s Eve that he’d actually received the COVID-19 vaccine. “What a great way to start the year!” he said. “I am a 100%—no, 150% believer that everyone should be vaccinated,” Penner added, “and I’m grateful and glad that I could help out the process a little bit.”

At the onset of the pandemic, licensed family therapist, nationally known HIV pre-exposure prophylaxis (PrEP) advocate, and frequent contributor to TheBody Damon L. Jacobs, LMFT, looked for a way to lend a hand. “For me, whenever there’s a crisis, it’s always important for me to see if there’s a way for me to help. When this all started, I wanted to learn about the clinical trials for the COVID-19 vaccine, because, I thought, if there’s a way for me to make a contribution toward getting us closer to the end of all of this, I want to do that.”

Jacobs had been in a trial for an experimental HIV vaccine in 2006 and 2007, so being part of a clinical trial was not foreign to him. Last summer, when clinical trials for the coronavirus vaccine were being advertised on social media, Jacobs filled out a questionnaire to be a volunteer. “In the beginning of November, they reached out to me at the Columbia Research Unit [in New York City]. I had a number of interviews before I went in,” he said.

It turned out, several of the researchers involved in this study had also been involved in the HIV vaccine trial that Jacobs had participated in before. “That gave me a certain comfort level,” he said. “I knew their work; I knew that they wouldn’t be spending their time on bullshit, that they were people of great character and integrity.” After learning more about the AstraZeneca vaccine, being assured of no interference with PrEP, he was approved for the trial. Since Jacobs was considered at high risk for catching COVID-19, he rolled up his sleeve and got the shot. “I couldn’t find or think of a reason not to do it!” he said.

He had been warned about possible side effects—and when he was blessed with none of them, he assumed he’d been given the placebo as part of the control group in the trial. “After the first dose, I went to the gym. I felt no fatigue, no stress, no soreness, so I thought that probably means I was given a saline solution,” he said. He went back for the second shot a few weeks later, convinced that it wasn’t the actual vaccine. “I again had no side effects, no soreness or fatigue, no nothing, so I guessed that I had no protection.” He thought, “It sucks, but that’s what science is about. No matter what, I’m still making an active contribution.”

When New York State made the Moderna vaccine available for essential workers like Jacobs, he went back to the researchers just to make sure that he’d had the placebo and could get the Moderna shot. On Jan. 7, he got a call informing him that he definitely got two full shots of the AstraZeneca vaccine. “I had them repeat it twice because I couldn’t believe it!” He said.

Jacobs remains part of the study, going in for a blood draw every four weeks, to measure and test for how long the vaccine lasts and what the ideal dosage is.

Both of these advocates donating their time and bodies to the cause of helping us find a way out of this coronavirus pandemic makes me feel so much better about getting the vaccine. “I’m just so happy to have it,” Jacobs confirmed. “What a relief it is!”

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