COVID-19 Vaccine Clinical Trials: One HIV Advocate’s Experience as a Study Volunteer

Many in the HIV community continue to work tirelessly to respond to the COVID-19 public health crisis, including by stepping forward to participate in vaccine clinical trials.

Recently, national HIV/AIDS consultant Leisha McKinley-Beach spoke with us and shared with us her experience as a volunteer in the Novavax vaccine phase 3 clinical trial at a local university. Participants randomly received either the vaccine or placebo in two doses, 21 days apart. The study is supported through the National Institute of Allergy and Infectious Diseases.

Q: Why did you decide to get involved in a vaccine clinical trial?

A: When the trial was announced, I was approaching my 30th year of working as an HIV advocate. Before I retired, there was still something I wanted to do—participate in a clinical trial. I never fathomed that my first experience would be for COVID-19 rather than HIV.

Q: Did you have any reservations?

A: Many. Even with as much health care knowledge as I have, as a Black woman, I personally wasn’t comfortable putting myself in that position. Culturally, it’s just part of the information that was passed down to me, that we do not trust health care systems in research areas. But then my mother-in-law passed due to COVID-19 complications and I wanted to take a strong action to honor her. I saw the Novavax trial announcement and reached out to a friend of mine in research and asked many questions about the trial’s safety. Then I read the trial’s information on cultural safety and scientific beliefs. I thought, “This is more. As a person of color, I have the opportunity to make a difference. From my HIV experience, I know how much this will impact us.”

Q: What has it been like for you?

A: The day I signed the consent forms was very emotional for me. [View Leisha’s video diaryExit Disclaimer.] I never expected it to hit me like that. I thought of the Black women who went before me, like Henrietta Lacks, who never had the opportunity to give consent. And of course, when I started, I felt some anxiety, including because the lab was located in a dark basement. But because of my HIV experience, I felt empowered to advocate for myself and I was pleased to see that the next time, they had changed the site. I went all the way through the trial (receiving both vaccine and placebo doses) and finally received my card showing that I am fully vaccinated. I am so proud to have contributed.

Q: What would you suggest to others who may be interested in joining a trial?

A: I would recommend it. It was a very rewarding experience for me. But it’s a personal choice and people should take the time to research and understand the trial.

View Leisha’s video diaries about her clinical trial experienceExit Disclaimer on YouTube. Also, hear her talk about her community work to end the HIV epidemicExit Disclaimer.

View NIH resources on what it means to participate in a clinical trial and how to find one.