To end HIV and control COVID-19, medicine must earn back the trust of people in Black, Latinx, and Native American communities, said Jonathan Mermin, MD, MPH, director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the CDC.
During the closing plenary of the United States Conference on HIV/AIDS October 21, Mermin laid out four principles behind those actions to the audience of USCHA:
Actively work with communities most affected by health inequities
Make plans to address them transparent
Work with community members on those plans and listen to their feedback
Do a good job
“Trust will come with proof of action,” he told the audience, watching virtually from their homes and offices.
But clinicians can take action in the exam room and during clinical trial recruitment to help the process along, said Russell Campbell, MA, deputy director of the Office of HIV/AIDS Network Coordination at the Fred Hutchinson Cancer Research Center, Seattle, Washington.
“Distrust in the medical and research establishment has deep roots,” he said during a presentation earlier in the week. To address this, clinicians must learn “culturally appropriate and meaningful engagement to influence the participation of historically underrepresented communities in healthcare and research.”
From Slavery to HeLa to Clinical Practice
Medical mistrust doesn’t stem only from the denial of treatment to the men who were part of the Tuskegee Syphilis Study. It also includes reckonings with the racist abuse of study participants by some of science’s most acclaimed leaders. Take, for instance, J. Marion Sims, MD, the so-called father of gynecology, who gained much of that information by experimenting without anesthesia on enslaved women; or Cornelius Rhoads, MD, whose name was removed from an award at the American Association for Cancer Research when objections grew concerning racist remarks Rhoads made about Puerto Rican patients in the 1930s. Or consider the story of Henrietta Lacks, the originator of the HeLa genes that have guided oncology research. Her genetic material was being mined for oncological insights without her permission and without compensation.
“The groups that have been systematically and intentionally denied treatment and known cures for diseases on behalf of research have just really taken the brunt,” Campbell said during a session role-playing best practices for addressing medical mistrust among potential clinical trial participants, conducted earlier in the conference.
“African Americans, American Indians, Puerto Ricans, Guatemalans, and others really still are heavily impacted by these abuses of research.”
And it shows in clinical outcomes. Research into HIV antiretroviral treatment adherence has found that medical mistrust was associated with a 76% likelihood that Black Americans living with HIV would be nonadherent to their treatments. But race-based medical mistrust drew into question the necessity of treatment at all.
A 2016 study in the journal AIDS Care found that although White gay men in Boston and primarily Black gay men in Jackson, Mississippi both reported concerns about side effects and lack of culturally appropriate care, it was the Black gay men in Jackson who expressed stronger medical mistrust