Developing new drugs and treatments for diseases hinges on clinical trials. The patients involved, however, are mostly white. In cancer research, only 5% of participants are Black and fewer than 2% are Latino, finds a new Scientific American analysis. Meanwhile, 95% of patients in Alzheimer's studies are white.
Without testing a diverse population, drugs may be less effective and even harmful in some cases. But many people don’t know about clinical trials or don’t trust doctors and drug companies.
“We know that there are different genetic alterations in tumors, for example, in patients with cancer, who are in different ethnic and racial groups. And therefore they might respond differently to different cancer therapies,” says Caryn Lerman, director of the USC Norris Comprehensive Cancer Center. “We know there's dietary differences in different ethnic and racial population groups. And we now know that our microbiomes, and that is both the good and bacteria that live in our bodies … [are] influenced by diet and diet varies.”
Vernell Brown is a nurse and was diagnosed with multiple myeloma in 2019. Soon after the discovery, his doctor suggested he join a clinical trial. Brown recalls being afraid, despite having worked in medicine for three decades.
“He did a good job trying to convince me, but it wasn't easy,” Brown tells KCRW. “The trust factor was number one, and I just didn’t know what was going on.”
That distrust stemmed from concerns of becoming a guinea pig, like the Black men who were part of the Tuskegee syphilis experiment.
Lerman says Brown’s reactions are often reflected in the communities she works with. She points out a whole range of barriers to access: “Maybe doctors are too busy, and not every patient who's eligible is offered a clinical trial. … There's limited outreach to the communities. … Another is that it can be very complicated to navigate the health care system.”
Plus, she says trials can be limited to people who don’t have other health conditions, such as diabetes, heart disease, and hypertension. “There might be limited eligibility for people who have multiple comorbidities. There is a push, I know, to make clinical trials more broad and more diverse in terms of comorbidities.”
Geography can be an issue too. “Often, the greatest variety of clinical trials are offered at comprehensive cancer centers. And sometimes they're farther away from where patients live.”
Resources do exist to support clinical trial patients, Lerman says, including from the Lazarex Cancer Foundation. The nonprofit provides transportation and stipends for those involved in FDA-approved research.
Brown says today, he feels like he receives better medical care than before joining the trial.
“I had a brother that also had the same disease, and he lasted two years. And now I'm almost at five. But I just think that I just get a better level of care. And being a nurse, I can see it.”
He continues, “I think my quality of life has improved. And it's sad that we don't know how to spread the word to people that it's not going to harm us or anything. It's going to help.”