Scientists and researchers have long failed at inclusiveness in clinical research trials. African Americans, Native Americans and Hispanic patients in particular are largely underrepresented in research into drugs and other disease treatments. Overall, African Americans make up about 13% of the population, but just 5% of clinical trials. And Hispanics fare even worse; they make up 18% of the population, but just 1% of clinical trial research, according to Clinical Research Pathways.
A 2018 ProPublica analysis found this is true even when a particular disease disproportionately affects one of these groups. One out of five people diagnosed with multiple myeloma in the U.S. is Black, and African Americans are more than twice as likely as white Americans to be diagnosed with the blood cancer overall, yet, the U.S. Food and Drug Administration approved a drug to treat it in 2015 after a trial in which just 13 of 722 participants, or 1.8%, were Black. Disease can manifest itself in different ways depending on a person’s ethnicity and race. Leaving people out of trials means certain groups risk not getting the best treatment.
Unfortunately, we’re seeing the same playbook once again as scientists rush to develop a vaccine for COVID-19. It’s no surprise drugmakers are far from having the number of people of color they should for a truly representative trial — though we wish it was, especially since the racial disparities that come along with COVID-19 are so jarring. On Tuesday, the Centers for Disease Control and Prevention said the disease is killing Hispanic, Black and Native American children at a much higher rate than white children. More than 78% of children who have died from COVID-19 have been from these three minority populations, groups that make up only 41% of the U.S. population. Similar disparities exist for adults as well.
Scientists should have known at the outset to make the extra effort to reach out to communities of color, knowing the history and realizing their obligation to come up with a vaccine that works for a diversity of people. Instead, the drugmakers leading development of a vaccine, Moderna and Pfizer, said late last month they had enrolled more than half the people needed for trials of 30,000 people, but only about a fifth were Black or Hispanic.
We need minority groups in these trials. It is their mothers, aunts, sons and daughters who are more likely to contract the disease and die from it. But we also understand the distrust and skepticism many of these groups have toward these trials. In many ways, the medical community hasn’t given them reason to feel otherwise. Past transgressions are still fresh in the minds of many. Take the Tuskegee Experiment, for example: African American men were provided no treatment for syphilis so researchers could learn about the disease progression. Or the use of the cells of Henrietta Lacks at Johns Hopkins, and later by researchers all over the world, without consent. In the 1940s, patients in a trial in Guatemala were deliberately infected with syphilis and other venereal diseases, and now, there are allegations that ICE has been performing hysterectomies on detainees without their consent.
To gain that trust, Black and Hispanic researchers should be heavily involved in these trials. People of color are more likely to be comfortable with and trusting of people who look like them, hence the push to get more Black and brown people into the medical field. Billionaire philanthropist and businessman Michael Bloomberg recently announced he would give $100 million to four historically Black medical schools to help train doctors of color. Researchers also need to address transportation and access issues some low-income participants may face.
They could also stand to learn from the efforts of George Washington University, with 50% enrollment in its clinical trial, well past its goal of 30%. The university told The Washington Post it administered the vaccine on campus and from a van parked in local neighborhoods. Researchers worked hard to address people’s fears, including why they couldn’t get the disease from the vaccine.
We know it’s no easy task dispelling fears and myths that have existed for decades. But it is what medicine owes to African Americans and other people of color to fix the effects of history. And it is what it needs to lessen the death toll of COVID-19, which is hitting some communities harder than others.
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The Baltimore Sun editorial board — made up of Opinion Editor Tricia Bishop, Deputy Editor Andrea K. McDaniels and writer Peter Jensen — offers opinions and analysis on news and issues relevant to readers. It is separate from the newsroom.
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