From self-preservation to altruism, vaccine volunteers’ motivations varied

Today, eligibility for the COVID-19 vaccine expands to all Nevadans ages 16 and up. And while getting vaccinated has become almost routine over the past several weeks, that wasn’t the case for vaccine clinical trial participants.

Harriet Gagliano won’t admit it, but altruism surely played a role in her decision to volunteer for Las Vegas clinical trials of the Moderna COVID-19 vaccine. But, Gagliano maintains with a laugh: “I don’t think of it that way. I’m very selfish. I did it for me.”

Gagliano wanted to be vaccinated against COVID-19 as quickly as she could and figured that, as a participant in the trial, she had a 50-50 shot at getting the vaccine. That it didn’t work out that way — “I would have paid extra to not have had the placebo,” she jokes — doesn’t diminish the fact that Gagliano’s participation and that of other volunteers in clinical trials of COVID vaccines is helping to slow the spread of the coronavirus.

Dr. Michael Levin is heading a two-year trial in Nevada of the Moderna vaccine through the Wake Research-Clinical Research Center of Nevada. The pediatrician recruited participants through news releases and social media and even used parents to spread the word. He ended up with about 515 volunteers from Southern Nevada, about 490 of whom were enrolled in the Moderna trial.

Their motivations varied, Levin said. “Definitely, a group felt this was the only way they were going to survive the pandemic. We had people come in and essentially lie about their condition to get into the study. They figured they had a 50 percent shot (of getting the vaccine). I’ve seen some subjects, as soon as they could get vaccinated, they dropped out.”

Some of those who decided not to sign on deemed the commitment of time and the repeated lab work required too onerous. But, Levin said, “I’d say most people had a desire to help bring about an end to the crisis we’ve been living through.”

The participants

Gagliano, 75, volunteered for the Moderna trial in June.

“Dr. Levin is one of my neighbors,” she said. “He started talking about it. I said, ‘I want that.’

“I wanted the vaccination. I knew if I was in the study, there was going to be a certain point in the study where they would say this is valuable and safe and effective.”

Will Ramadan, 44, a DJ who performs under the name KnowleDJ, learned about the Moderna trial through advertisements and social media. “I was curious,” he said. “I wanted to be part of history, with the knowledge that I can look back and say, ‘I was one of the volunteers.’”

He’s also “a strong believer in science” and found it “distressing during the pandemic to see friends fall victim to reading misinformation.

“There are real people dying and getting sick, and I felt this was the best thing I could do and put money where my mouth is.”

Greg Chase, 36, founder and CEO of Experience Strategy Associates, volunteered in November for the Janssen/Johnson & Johnson vaccine trial here. After having worked on COVID-related public service ad campaigns for the past year, “I was interested in being proactive and being part of the process,” Chase said.

“I saw it as, ‘OK, we know they’re going to need a base number of volunteers for this to move forward. What can I do to see neighbors and family get back to work?’ ”

Before retiring and moving to Las Vegas in 2018, Christy Fleurat, 67, worked for 35 years in the pharmaceutical industry, overseeing clinical trials of drugs around the world. She had created a busy lifestyle here until she said the pandemic “stopped everything.”

As lockdowns continued and the pandemic worsened, “I really wanted to do something to help out,” said Fleurat, who read about the Moderna trial in the newspaper and signed on. Fleurat figured she could use her experience to “do something for all because we’ve never been through anything like this in our lifetime.”

Placebo or not?

In both trials, participants received either a vaccine or a placebo, and not even the researchers they worked with knew which they received. They then went on with their lives, checking in with researchers for periodic blood tests and lab work and answering daily questions about their health.

Gagliano suspected she had received the placebo. Fleurat suspected the same, based on the absence of reactions after receiving her shots. But, Fleurat said, “even placebo data is extremely valuable because you have something to compare the drug product to. So it still felt good, even with the placebo. I was making a difference and donating my data to a groundbreaking clinical trial.”

In December, after receiving what he later found to be the placebo, Ramadan tested positive for COVID.

“My symptoms were really mild,” he said. Still, he reported that to researchers as required, and they “doubled down” on the already-rigorous scrutiny his health was receiving.

Luckily, the infection passed “fairly soon,” he said. “I’m a really healthy guy. I run 10 miles a week. I’m a plant eater; I’m a big believer in nutrition. Maybe that had something to do with it. But there have been healthy people who have passed away from it.”

Chase suspected he had received the Janssen/J&J vaccine because of the reaction he had after getting vaccinated, including body aches that disappeared in about a day and a half, which “is pretty consistent with what folks who were getting any of the vaccines have.”

Five weeks later, he also tested positive for COVID.

“My case was very mild compared to others in my household who had COVID at the same time,” he said.

Continuing trials

Gagliano, Ramadan and Fleurat all received placebos. After results were unmasked, they were offered the Moderna vaccine. All accepted without hesitation.

The actual vaccine was “a doozy,” causing flu symptoms that left Ramadan “pretty much bedridden for 24 hours,” he said. “But that’s your body building the immune system up.”

All will continue as participants in the studies, although lab work and questionnaires will come less frequently. They now await returning to a post-COVID new normal that they helped to create.

Levin has heard health professionals and front-line workers being called “heroes of the pandemic.

“I have called patients in the study heroes as well,” he said, who roll up their sleeves to “make life better for everybody.”

Contact John Przybys at jprzybys @reviewjournal.com. Follow @JJPrzybys on Twitter.