Black Americans remain underrepresented in clinical trials for new drugs and medical treatments, and a panel at the Congressional Black Caucus Foundation’s Annual Legislative Conference on Friday explored how to change that.
The session, “Let’s Talk Trials: Why Representation in Clinical Research Matters,” examined barriers that keep Black people and other historically underrepresented populations from participating in research and ways to make clinical trials more accessible.
Why it matters
Diseases can affect people differently based on age, gender, weight, race, ethnicity and other factors, making representation in clinical trials important.
Roughly 1 in 4 clinical trial participants are from communities of color, although those communities make up more than 40% of the U.S. population, according to pharmaceutical company Merck.
A 2022 report from the National Academies of Sciences, Engineering and Medicine found little progress had been made during the previous three decades in increasing participation by racial and ethnic minority groups.
The report also found willingness is not the main obstacle. Asian, Black and Latino Americans and American Indian and Alaska Native people are no less likely, and in some cases more likely, to participate in research if asked.
Fueled by a personal passion
Merck began an effort to improve clinical trial representation in 2018. Dr. Adrelia Allen, executive director of representation in clinical trials at Merck, is a pharmacist and medical doctor who specialized in clinical research.
“I had my own trials that I was managing and recognized that the patients that I was enrolling in my trials didn’t look like me,” she told Word In Black.
Her own family underscored the problem. There were indications her father might have prostate cancer, but he was delaying treatment because he would need an MRI.
“He didn’t want to be treated as a guinea pig. And it was triggering for him,” Allen said. Her family, she said, “would not have considered joining a clinical trial at the time because of past atrocities.”
A historical moment presses the issue
Allen said the COVID-19 pandemic also drew attention to the lack of representation in trials and helped move Merck toward “having a team that’s accountable for representation in our clinical trials.”
“It is better for us to understand how the drug works in a controlled environment before it is made available to the general public,” Allen said. Since drugs can work differently in different populations, “we need to have all patients involved in our clinical trials to make sure that the science is what we need and it’s the right thing to do.”
Merck is working to expand access to information through educational initiatives such as Let’s Talk Trials.
“The biggest part for me right now is awareness,” Allen said.
Trials also must consider families and caregivers, she said. Transportation issues, missed work and language barriers can keep people from participating.
Allen described an African American mother whose daughter was newly diagnosed with a serious disease. The mother researched the prescribed drug, saw that its clinical trials lacked diversity and did not want her daughter to take it.
“That’s the power of an empowered patient leveraging the resources that are available to really do the work to see who were the patients that were included in the trial,” Allen said.
Cancer disparities
Black men are 1.5 times as likely to develop prostate cancer and 2.2 times as likely to die from it as White men. Black men account for roughly 30% of U.S. prostate cancer deaths but less than 3% of participants in prostate cancer clinical trials.
Black men also are about 12% more likely to develop lung cancer than White men, according to the American Cancer Society.
A study of more than 50,000 patients with five types of cancer found that 4.4% of Black patients participated in oncology clinical trials compared with 7.2% of White patients.
A survivor’s story
Barry Nelson, a lung cancer survivor and patient advocate who spoke on the panel, told the audience how a clinical trial changed his experience of treatment.
“When [I] was diagnosed, I was given six months to live,” Nelson said.
After months in a clinical trial, Nelson said, he was able to ride his bicycle to chemotherapy appointments. He said his research team provided emotional support in addition to medical treatment.
“I knew that I had real partners,” Nelson said. “Sometimes people just need to know that someone is there — that someone is with me as I’m going through this.”
The experience inspired him to speak publicly.
“That’s one of the reasons why I like to do this … to lend my voice.”