Karen Bass, a Democrat, represents California’s 37th District in the House of Representatives and is chair of the Congressional Black Caucus.
Six months into our battle against covid-19, the disease has killed more than 181,000 Americans, and the pandemic continues to disproportionately affect communities of color. Black Americans, Latinos, Asian Pacific Islanders and Native Americans are significantly more likely than White Americans to be diagnosed with covid-19, be hospitalized over it and die of the disease.
Despite these appalling trends, the most promising covid-19 vaccine trials are reportedly failing to recruit participants of color. This threatens the trials’ validity, since vaccine candidates can vary in effectiveness across different racial and ethnic groups. It is also potentially catastrophic for people of color, who are disproportionately represented among front-line and essential workers — and who are suffering the worst health and economic effects of this pandemic.
Facing criticism, pharmaceutical executives appear to be scrambling to assure the public that people of color will be well represented in vaccine trials. Too much is at stake to not get this right.
The National Institutes of Health and the companies working on stage-three vaccine trials must urgently recruit Black, Latino, Native American and Asian Pacific Islander participants, using strategies endorsed and supported by the communities they are targeting. Pharmaceutical companies must not be allowed to hide data by lumping racial and ethnic groups together: Disaggregated data on enrollments by age, gender, race and ethnicity should regularly be made available to Congress and the public before the trials begin. And vaccines should only be made available to the public if they have been proved effective for everyone, in trials that represent the true diversity of our nation.
Americans of color have reason to be wary of participating in medical research. For centuries, medical researchers and practitioners experimented on patients of color without their consent. The four-decade Tuskegee experiment misled poor Black men in Alabama into believing they were being treated for syphilis while researchers were merely keeping tabs on them until they died, so their bodies could be autopsied. Even after the discovery of penicillin, U.S. Public Health Service doctors and nurses administered only aspirin and placebos.
There are other, less infamous examples of racist medical experimentation. As many as 1 in 4 Native American women and girls were sterilized without their consent by the Indian Health Service in the 1960s and 1970s — going under the knife to have their tonsils removed and emerging without their reproductive organs. Unknown thousands of Black women and girls suffered involuntary hysterectomies during the 20th century, including civil rights icon Fannie Lou Hamer.
More recently, in my hometown of Los Angeles, researchers gave Black and Latino babies as much as 500 times the approved dosage of the experimental EZ measles vaccine between 1989 and 1991 — even though the vaccine had been linked to hundreds of deaths in developing countries. Parents were not told that the vaccine was experimental or that their children were intentionally being given overdoses.
The only way to overcome this history is for medical researchers to meaningfully involve communities of color at every stage of the process. Black Americans and Latinos are still significantly less likely than non-Hispanic Whites to be enrolled in clinical trials. Those running the covid-19 vaccine trials must break down the social and economic barriers that can keep people of color from taking part.
The NIH and pharmaceutical companies must partner with trusted community organizations; those messengers can take the lead on recruiting and enrolling more Black, Latino and Native American trial participants. Targeted outreach includes providing meaningful funding for the community organizations to hold information sessions and answer questions. Provisions to support and fund aggressive, targeted outreach and interventions for testing, treatment and any eventual vaccine for the communities of color suffering most from covid-19 were included in the Heroes Act that the House passed in May. The Senate has yet to take up the legislation.
Pharmaceutical companies and NIH can make it easier for people of color to enroll in vaccine trials by extending clinic hours to evenings and weekends, reimbursing or providing vouchers to help cover transportation costs, and providing consent forms and other enrollment materials in languages other than English. At every step, researchers must counteract our nation’s legacy of medical abuse by being utterly transparent: clearly communicating risks and making sure patients understand how the data collected is being used.
Until covid-19 is under control, lives will remain disrupted — with kids out of school, parents out of work, and thousands falling ill and dying. Since the Trump administration has failed to contain the spread of the coronavirus — and shows no interest in learning from its mistakes — the pressure is on to develop vaccines that are safe and effective for everyone. If vaccines are not effective for those most at risk from covid-19, we will have failed all over again.
There’s still a chance for the NIH and pharmaceutical companies to get it right. We are watching to make sure they do.