Black Patients Aren’t Avoiding Clinical Trials. They Often Aren’t Asked

Black Americans remain underrepresented in clinical trials for new drug and medical treatments, and a panel discussion 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,” took place at the Walter E. Washington Convention Center. Panelists examined the barriers that keep Black people and other historically underrepresented populations from participating in cutting-edge research, and the actions key stakeholders can take to make clinical research more accessible and inclusive.

Why It Matters

Diseases can impact people differently based on their age, gender, weight, race, ethnicity and other factors. That’s why it’s important for clinical trials to include people from a wide variety of backgrounds. Roughly 1 out of 4 of clinical trial participants are from communities of color, even though those communities make up more than 40% of the U.S. population, according to the pharmaceutical company Merck. 

These findings echo other research showing that Black Americans make up nearly 14% of the U.S. population but account for only 8% of clinical trial participants, according to the National Academies of Sciences, Engineering and Medicine. Representation in clinical trials helps researchers gain a more complete picture of how investigational medicines work across populations.

Representation is often lower for specific diseases. A 2022 report from the National Academies concluded little progress has been made during the past three decades toward increasing participation by racial and ethnic minority groups.

The same report found that willingness is not the main obstacle. It said Asian, Black and Latinx Americans and American Indian and Alaska Native people are no less likely, and in some cases more likely, to take part in research if they are asked.

Fueled by a Personal Passion

Merck began a grassroots effort to improve clinical trial representation in 2018. Dr. Adrelia Allen, who is executive director of representation in clinical trials at Merck, has been with the company for 27 years and in her current role since 2020. As both a pharmacist and a medical doctor who specialized in clinical research, she noticed who was missing from studies. 

“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.

Issues occurring in her own family underscored the problem. There were some indications that her father may 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,” Dr. 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 

Dr. Allen said the COVID-19 pandemic also drew heavy attention to the lack of representation in trials. The history-making moment helped propel Merck toward “having a team that’s accountable for representation in our clinical trials” and working with clinical teams to be intentional about it. 

“It is better for us to understand how the drug works in a controlled environment before it is made available to the general public,” Dr. 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,” she says. 

Merck is working to expand access to information and resources through educational initiatives such as Let’s Talk Trials, which offers brochures, videos, frequently asked questions and questions patients can discuss with their health care providers. “The biggest part for me right now is awareness,” Dr. Allen said. 

She said trials also must consider families and caregivers. “We recognize that it’s not just the patient,” she said, noting that someone often has to take off work to take  the patient to visits. Transportation issues and language barriers also can keep people from participating in clinical trials.

She described an African American mother whose daughter was newly diagnosed with a serious disease. The mother researched the drug being prescribed, saw that the 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,” Dr. Allen said.

Cancer— lung and prostate cancer in particular — illustrate just how high the stakes are for Black people.

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. And while Black men  account for roughly 30% of U.S. prostate cancer deaths, fewer than 3% of participants in prostate cancer clinical trials are Black. 

The numbers aren’t much better regarding lung cancer, where Black men are 10% to 12% more likely to develop lung cancer than white men. In 2023, just 4.4% of Black patients took part in clinical trials compared with 7.2% of white lung cancer patients.

A Survivor’s Story

Barry Nelson, a lung cancer survivor and patient advocate, 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 participating in a clinical trial, Nelson said, he was able to ride his bicycle to his chemotherapy appointments. He said his research team provided emotional support in addition to cutting-edge medical treatment. At times, he said, his oncologist patiently listened to the unconventional treatments, medications or theories friends shared with him, then explained the importance of efficacy testing and success rates. That made him feel heard and seen.

“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.”

How to find a trial

Educational materials about clinical trials are available at Merck’s Let’s Talk Trials page. Patients should ask their health care providers whether a trial might be right for them. Anyone interested in participating also can search for studies on ClinicalTrials.gov, the federal registry of clinical studies. The Prostate Health Education Network also has a search site.

RELATED: When Prostate Cancer Comes for Black Men

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