The Philadelphia Tribune: Dwight Evans: Bridging the medical research trust gap

As we come closer to a legitimate release of a COVID-19 vaccine, enormous challenges must be considered in its administration and distribution. One major challenge is how officials can ensure that African Americans, and other disenfranchised communities that have been disproportionately impacted by the coronavirus, can trust the proposed vaccine as well as the rigorous testing procedures through which it should be vetted.

As I speak with constituents across my district, I frequently hear concerns among Black residents about participating in vaccine trials or the immunization itself. These concerns are based in part on the politicization of the vaccine but more importantly on decades of racially tinged approaches to medical research.

History has demonstrated time and again that communities of color were used nefariously in medical research procedures. These ethically corrupt research practices left their victims dead or impaired, doctors and medical institutions with permanently tainted reputations, and many with a cynical view of medical science. The historically rooted mistrust is now worsened by the health care access and outcome disparities that COVID-19 has magnified.

Black Americans are all too aware their collective health standing is significantly lower than that of their fellow citizens. We have stunningly higher rates of diabetes, AIDS, heart disease, cancer and nearly every other medical problem, including homicide and mental illness. We die younger more often, and usually receive worse care than our white neighbors.

This longstanding dichotomy explains, in part, why only 5% of Black patients were included in trials for 24 of 31 cancer drugs approved since 2015. Some cancer trials have less than 2% Black participation, though we make up 13% of the population.

Recent articles bemoaning the lack of Black test subjects in COVID-19 research trials cite the infamous Tuskegee syphilis study. This four-decade-long public health study that carefully monitored — but did not treat — 400 unschooled Alabama sharecroppers with syphilis is a bellwether symbolizing the historical precedent for the current trust gap.

But there is more to the non-participation riddle than Tuskegee. A number of authors have documented this tortured history. In 2006, Harriet Washington published “Medical Apartheid,” illuminating the chilling history of Black test subjects from the antebellum era to the present. Her award-winning book successfully showed “the troubled history of medical experimentation with African-Americans — and the resulting behavioral fallout that causes researchers and African-Americans to view each other through jaundiced eyes.”

In my own city of Philadelphia, author Allen M. Hornblum has published a series of books on the use of vulnerable people as human guinea pigs. In “Acres of Skin,” his well-regarded history of prisoners as research subjects, he documented how one elite university and prominent dermatologist transformed a busy, overcrowded urban jail into the nation’s largest human research factory. Initiating protocols on everything from chocolate, hair dye and deodorant to dioxin, radioactive isotopes and chemical warfare agents, imprisoned Black men and women became the grist for Dr. Albert M. Kligman’s research mill. His multimillion-dollar entrepreneurial creation probably tested more products and drugs on more subjects over more years than anyone else in the nation’s history.

The past is well-documented and on display for all to evaluate. But we do not need to let it dictate the present. If officials are mindful of the pain past practices have inflicted and develop an empathetic response, the testing and administration of the COVID-19 vaccine can establish new standards of how disadvantaged communities and the health care and research communities interact and work together.

Firstly, we need to start a community-based conversation at the local and federal levels that acknowledges the justifiable trust gap and develops consensus-driven solutions to overcome it. I have already reached out to Rep. Richard Neal, chairman of the House Ways and Means Committee, to suggest that we should hold a post-election hearing on this matter. Moreover, I have begun discussions with health care experts in my district toward initiating a collaborative dialogue on this issue.

Secondly, public figures involved in messaging around the vaccine administration need to be representative of the broad diaspora affected by COVID-19. If the messengers look like only one segment of our community, mistrust will persist. We must broaden the dais of folks who are talking about this.

Third, anyone tasked with messaging this important topic must do so in a clear, understandable and transparent manner. Talk about the scientific process for testing and make sure people understand the rigor underlying it. If more people are able to understand the process for testing and administration, more are likely to accept the vaccine.

Finally, officials must pay heed to some of the additional barriers that communities of color face in participating equally in medical research and health care access. For example, many medical research studies take place during working hours, which can be difficult to access for folks who are working hourly-wage jobs. Employers should recognize the importance of ensuring that COVID-19 vaccine testing includes as diverse a pool as possible and work with employees who may be interested in participating in the testing process.

Crises create opportunities for change. COVID-19 presents that kind of opportunity. Let us use this crisis to create a new paradigm for how Black Americans and all disenfranchised communities are incorporated into the research process and vaccine administration. Our nation will be better off for it.