Advocating for diversity in clinical trials: a conversation with clinical trial participant Patrick Gee
When you look in your medicine cabinet, what do you see?
Probably an assortment of over-the-counter medications for everyday ailments like headaches or heartburn. Perhaps prescription drugs for an acute or chronic illness. Or maybe an at-home pregnancy or COVID-19 test. What you do not see, though, are the faces of all the people who made those tests and treatments possible by choosing to participate in a clinical trial.
One of those people is Patrick Gee. Patrick is an American Kidney Fund (AKF) Ambassador and kidney transplant recipient who participated in a clinical trial – a research study that tests the effectiveness and safety of new treatments, medicines or therapies.
Patrick volunteered to be a participant in Johns Hopkins Medicine's COVID-19 Vaccine Transplant Research Study. The trial is testing the level of COVID-19 antibodies in transplant recipients who received a COVID-19 vaccine to see how effective it is for transplant recipients. He learned about the trial through an email and decided he "wanted to be part of history, creating treatments for this virus and others that may come up to help people with comprised immune systems."
"At the beginning of COVID-19, a lot of people in the kidney community felt very vulnerable because so few people with kidney disease could participate in the clinical trials for the development of the vaccine," explained Patrick. "I just wanted to participate in the clinical trial to show that, at least for myself and my peers, the vaccine did work in protecting us and protecting our transplanted organs."
Clinical trials are an essential part of testing the safety and effectiveness of new treatments. They depend on having willing trial participants like Patrick. They work best with a diverse group of participants to ensure the treatment works for all people who may use it. As a Black man, Patrick is also uniquely aware of the importance of increasing diversity in clinical trials.
"Diversity in clinical trials is important because we have diversity in our society," Patrick said. "We need diversity, we need equity and we need inclusiveness in clinical trials because it is humanity that we are trying to treat."
Unfortunately, people of color currently make up less than 16% of clinical trial participants, despite representing 39% of the U.S. population. Multiple barriers exist that have contributed to this lack of diversity in clinical trials, including lack of trust based on past historical abuses, language and cultural differences, health literacy, religion and a lack of awareness and knowledge about what clinical trials are and what it means to participate in one.
"People of color don't talk about clinical trials because nobody talks to us about participating in them," Patrick said.
That is why Patrick is working with AKF on its diversity in clinical trial campaign, which aims to educate and increase awareness about the importance of diversity in clinical trials.
"By talking openly about my experience with clinical trials, I'm hoping more Black people will consider signing up for one, so our community can move past the historical legacy of mistrust we have had for trials in the past," he said.
When clinical trial participants are not from diverse backgrounds, it means that new treatments and therapies being tested may not work as well for certain demographic groups as others. Patrick recognizes that this is especially true for conditions that disproportionately impact communities of color, like kidney disease, diabetes and high blood pressure.
"Participating in a clinical trial for me also means that I'm helping to ensure that we find better health treatments, medications and interventions to give people in the Black community a better quality of life," Patrick said.
Patrick did have some concerns about participating in the trial, but he was fortunate to have a supportive family and medical team to help ease his concerns.
"My family was very supportive," he said, "and my medical team always creates a safe environment for us to talk about some of the hard conversations, including past historical abuses and racism in clinical trials. They were instrumental in allowing me to sit down and just to talk these things through."
For those interested in participating in a clinical trial, Patrick suggests gathering as much information as possible to feel confident and comfortable about participating. He also recommends bringing a partner, caregiver or friend to discuss the specifics of your participation consent to ensure you have another set of eyes and ears to understand what is expected.
Patrick is still currently participating in the trial. Not only does he submit a blood sample to test for antibodies once every four months, but he also participates in a webinar every quarter with updates about the trial, during which there is an opportunity to ask questions.
He is "extremely happy with the progress that they are making" and hopes that "at the end of this clinical trial, we'll better understand how COVID has impacted people with a kidney transplant."
Learn more about clinical trials, including how to find one to participate in, on AKF's website or on clinicaltrials.gov. And for people of color who are interested in participating in a clinical trial, Patrick has this message:
"You are your best advocate. Participating in clinical trials is important because your life matters, your health matters and future generations matter. And by doing this, that's one step toward mending a broken healthcare system."
AKF's diversity in clinical trials campaign is made possible by support from GSK.