There Is No Place For Bias, Mistrust Or Underrepresentation In Healthcare

How can healthcare leaders bridge the gap between minority communities and the healthcare industry—and achieve scientific justice for all?

As the U.S. readies for a return to normalcy with increasing Covid-19 vaccinations, it’s important that we don’t forget the devastating impact of the pandemic, particularly on those in Black and Brown communities. At its peak, according to the CDC, Native American, Black and Latino people were hospitalized with Covid-19 at nearly four times the rate of white Americans, and were almost three times as likely to die. This is a major indicator that minority representation in vaccine trials is critical to their development. Moderna reported that 37% of the participants who were part of their vaccine trial were minorities, and Pfizer stated that 30% of their U.S. trial participants were people of color.

As healthcare leaders, we must continue to prioritize diversity in clinical trials. And as an industry, we must commit to delivering scientific justice during a critical moment of racial equity in this country and across the world.

We can’t erase history, but we can change protocols

There are infamous examples of how previous abusive medical studies devastated communities of color and contributed to a long-standing mistrust of the medical community. In the Tuskegee experiment, for example, Black men were unknowingly infected with syphilis and then denied treatment in a decades-long trial. There is also Henrietta Lacks, a poor Black woman whose cancerous cells were biopsied and cultured for medical research in the 1950s without her consent—cells that have revolutionized modern medicine. Minorities’ deep-seated mistrust of the system is warranted and leads to an understandable unwillingness to participate in present-day clinical trials and even hesitancy still to receive the Covid-19 vaccine.

The impact of these terrible events is evident today in the lack of racial disparity in multiple myeloma research. Although African Americans make up about 30% of multiple myeloma cases in the U.S., African Americans made up only 4.5% of multiple myeloma clinical drug trial patients between 2003 and 2017, per the FDA. This underrepresentation in clinical trials could mean that the therapies being developed to treat multiple myeloma will be missing vital biological research critical to a population disproportionately affected by the disease.

The abuse, misuse, disparity and lack of informed consent are just a small part of the minority population’s injustices and inequities. According to the 2019 census, minority patients are less likely to be insured than white patients, inhibiting access to adequate healthcare. Additionally, clinical trials require lengthy time commitments, which are often not feasible for those who cannot take time off work.

The path forward

How can healthcare leaders bridge the gap between minority communities and the healthcare industry?

• Institutions should run and design clinical trials with appropriate representation of the patient population to increase overall health equity.

• We must also strive to educate and inform minority communities about participating in clinical trials and how critical their participation is to the population’s wellbeing.

• Additionally, clinical trials need to be accessible to recruit more diverse participants.

I am hopeful that as leaders, we can continue to deliver on increased equity with movements like the new industry-wide principles on clinical trial diversity, released by the Pharmaceutical Research and Manufacturers of America (PhRMA) to increase diversity and inclusion in clinical trials.

“Injustice anywhere is a threat to justice everywhere”

Like many societal issues, underrepresentation stems from systemic injustice. There is no easy solution. The best way to meet these challenges is by listening, learning, building trust, and working together to bridge the gaps. Good medicine serves all people, and it is our responsibility to ensure that clinical research does not benefit the few but serves to improve life for all.

John F. Crowley is the Chairman and CEO of Amicus Therapeutics. John’s involvement with biotechnology stems from the 1998 diagnosis of two of his children with Pompe disease—a severe and often fatal neuromuscular disorder. In his drive to find a cure for them, he left his position at Bristol-Myers Squibb and became an entrepreneur as the Co-founder, President and CEO of Novazyme Pharmaceuticals, a biotech start-up conducting research on a new experimental treatment for Pompe disease (which he credits as ultimately saving his children’s lives). In 2001, Novazyme was acquired by Genzyme Corporation and John continued to play a lead role in the development of a drug for Pompe disease as Senior Vice President, Genzyme Therapeutics.