Patient Perspective: A COVID-19 Vaccine Clinical Trial Story

John is a strong believer that you cannot be in a position to help others if you are not physically or mentally in a mindset where you are the best version of yourself. He lives by the words of Gandhi, “A sign of a good leader is not how many followers you have, but how many leaders you create”. If he could, he would spend most of his time volunteering to give back to his community because he believes it’s important to do all that you can to help others.

He has been married to his wife for 27 years, and together they have three children. John enjoys serving as an adjunct professor at Southern New Hampshire University and providing support for training at an engineering firm. John is a Washington, DC native but now calls Charlotte, NC home.

John is also a medical hero because of his gift to research as a participant on a COVID-19 vaccine clinical trial. Read John’s story as to why he decided to make a difference through volunteering in research.

Q: Why did you decide to participate in a clinical trial?

A: I heard about the study and when talking to my wife I asked her what she thought about participating. She looked at me and said yeah, right. Initially, I said the same thing. Then I saw an interview on a news station of a teenager who had lost both of his parents and I thought to myself, this is enough. I had to do something after seeing so many families overwhelmed by sadness and grief because they lost loved ones, as well as the dynamics in communities of color and the significant loss they were experiencing.

I found out where the studies were occurring, so I spoke with someone at Tryon Medical Partners and Javara Research. I reached out to see if I could help. They explained that they were looking for volunteers and specifically, people of color. Behind the scenes I was doing my part by researching the findings from previous trials and learning all that I could to familiarize myself with the new technologies and components of the vaccine that were being implemented.

I went to the practice, did a physical and received a shot in my arm. It wasn’t until that second shot that I thought something felt different. Although I am very active and healthy, I had to take a moment to rest because my arm was sore. Usually my go to, with any shot, is to put a cold compress on the area and take some pain relief medication and then I feel fine, and it was the same with this shot as well.

The interesting thing is that I didn’t tell anyone, including my wife. I didn’t tell her because of the concerns she had from our previous conversation and although we talk about everything, I knew she would be mortified and tell me it wasn’t a good idea. I believed volunteering in a COVID-19 vaccine clinical trial was important and seeing the kid who lost both of his parents was always in the forefront of my mind. My wife and I have had the luxury to raise our children to adulthood and if something were to happen to us, we know they would be okay; but that will never be the case for that young man we saw on television.

It took me a month to tell my wife that I was participating in a vaccine clinical trial. She stared at me in horror and when she spoke, let’s just say, she wasn’t thrilled with my decision and not telling her. After explaining to her why I did it, she understood.

Because I was having such positive experiences in research, I started to have conversations with my fraternity brothers, who are predominantly men of color, and others in my core network. I thought this could be an opportunity for people who look like me to be active and get in front of something that could potentially add value to their lives and the lives of those around them. I encouraged them to be a part of the study but of course, their responses were not in favor of doing so. Even though they said no, they understood and respected my decision to be a part of research. Now everyone wants a vaccine, and because of the conversations I previously had with them and because they knew how serious I take my health, they will get the shot when it becomes available to them. That showed me that volunteering in research and having those tough conversations with them was not in vain.

Q: Tell me about your experience in the clinical trial. Specifically, tell me about your interactions with the physicians and staff.

A: I had to complete my daily journal log and come into the clinic every now and then to have my vitals checked and to give blood. The part I really loved were the phone calls. You received a phone call once a week in the beginning and then once a month starting in December.

The staff would ask questions to ensure I didn’t find myself in a situation where I had any symptoms or could contract the virus. Everyone was wonderful to work with and I really loved that they checked in to make sure I was okay. I enjoyed working with this professional and courteous team.

Q: What, if anything, do you wish could have been done differently in your clinical trial experience?

A: I wish I would have volunteered in a COVID-19 vaccine clinical trial sooner because I would have liked to be a part of phase 2 opposed to phase 3.

I would also have liked to have an open forum where we could gather some of the participants. I saw that people who were part of the trial were organically linking themselves together online. Although I think that could be risk, I respect their eagerness to want to connect and understand each other’s experiences. I know that with this being a blinded study, you don’t necessarily want to encourage those types of interactions because critical information may be disclosed prematurely. I just thought it would be fun to talk with someone else who was a part of the study, even before the unblinding, and especially other people of color to learn why they were motivated to volunteer like me.

Q: Why do you believe it’s important for people of color to participate in clinical research?

A: How can we possibly get help if they don’t know anything about us? The reality is we know research hasn’t necessarily been targeted toward black people. I think we can change that by demanding to be a part of the solution. There have been several instances that have had less than favorable outcomes leading to many people not wanting to be a part of research, and I respect why someone would be hesitant to participate. We must be change agents, engaged and ready to be a part of the solution. I think sometimes it requires us to say, ‘I’m going to do what I can to help move things forward.’

Q: What do you want to tell people of color who are considering or hesitant to participating in research?

A: Get in the game and ask hard questions. You know how people say, if you don’t play the lottery you can’t win? You can’t win if you’re not in the game. I don’t like being left behind and they shouldn’t either. This is an opportunity for them to be in the front seat and I’m hopeful my journey will encourage black people to be the drivers in their health care.

It’s one thing to go to your physician and they ask you questions but be confident enough to ask them questions too, especially about clinical research, and keep asking until you get answers. Once I became a part of research, I asked the clinical team what they were doing to promote the vaccine and getting minorities engaged. Then I reached out a month later and I said to the research staff that we have to do more to get minorities engaged, and the person I spoke to put me in contact with someone who I could speak with to further move this along. I took matters into my own hands and wrote letters to the pharma company and other entities to inquire about what they were doing to establish connections with communities of color. I let my frustration fuel me into being a part of the solution by persistently doing anything I could to help. We have to be our own change agents and our own advocates because there aren’t a lot of folks advocating for us, so we have to do it ourselves and encourage others to do it too.

Q: How would you describe clinical trials in 3 words?

Innovative – The technology used in research is vastly different than it was before.

Transformational – Research has the ability to drastically change lives.

Scary (the unknown) – Let’s not sugarcoat it. We are very fearful of the unknown. We don’t know what is going to happen during research, but what I do know is the statistics around deaths due to COVID-19 and how rapidly the cases rose across our country. There are some things we can do by wearing a mask and social distancing, but for me I think research has to be intentional and focused on moving the envelope as quickly as it can so we can have better outcomes.

I’m not interested in going back to where we were in the past but similar to what we did with COVID-19, I am hoping we can do the same thing with cancer and diabetes and some other diseases that are waiting for a solution. It’s my belief that we have to do all that we can, and we don’t have the luxury to be waiting around. For people in the minority communities, we have to be more intentional and get out of our comfort zones so we can be counted.