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Healthcare inequity creates 'crisis of trust' among US marginalized communities

Ongoing inequities in the U.S. healthcare system have led to distrust in the medical framework, compounding access disparities for marginalized communities that have been further exposed during the COVID-19 pandemic, according to a study from Genentech Inc.

Groups of people in the U.S. are designated as "health disparity populations" due to a series of barriers that prevent equal access to routine care or participation in clinical research based on race, ethnicity, immigrant status, disability, sex, gender or geography, according to the National Institute on Minority Health and Health Disparities.

Genentech — part of Swiss pharmaceutical giant Roche Holding AG — found in interviews with more than 2,200 people from both the general population and members of Black, Latinx and LGBTQ+ communities and communities with a low socioeconomic status that a "crisis of trust" among the marginalized groups is partially to blame for a lack of access to care, known as medical disenfranchisement.

While almost half of the general population said in the study that patients are treated fairly, 27% of Black people, 27% of Latinx people, 34% of LGBTQ+ people and 23% of people with low socioeconomic status believed the same.

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Genentech Chief Diversity Officer Quita Highsmith
Source: Genentech

Genentech has sought to increase diversity in clinical trials, but the COVID-19 pandemic has made the effort an even more urgent matter, Chief Diversity Officer Quita Highsmith told S&P Global Market Intelligence in an interview.

"What COVID has done is shine a very bright spotlight on health inequity, and we needed to really understand what marginalized patient populations are thinking about healthcare," Highsmith said. "And what's heartbreaking especially as COVID is still here and rising is that these patients don't believe that they're going to be treated fairly and equally in the healthcare system, and that these medically disenfranchised patients believe the system is not only flawed but actively out to get them."

Highsmith noted that about 90% of clinical research is conducted in people of European ancestry, the reasons for which are many-fold — but the way medically disenfranchised people are treated at various points within the healthcare system has led to a cycle of distrust, she said.

"When you are not treated well in your most grave moment, you don't have trust in the system," Highsmith said. "When the system is telling you you have to find your own care, you're not treated with empathy."

Pharmaceutical companies including Gilead Sciences Inc. and Bristol-Myers Squibb Co. are investing more to address diversity in areas such as access to treatment, clinical trial enrollment and executive representation.

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Addressing clinical diversity

In an effort to address health inequity in the COVID-19 pandemic, Genentech conducted a late-stage clinical trial of its rheumatoid arthritis drug Actemra in a group of patients that was about 85% minority racial and ethnic groups.

Patients in the study who received Actemra and the standard of care for COVID-19 and related pneumonia were 44% less likely to require mechanical ventilation or die from the disease.

The majority of patients in the study — called Empacta — were Hispanic, with significant Navajo and Black populations represented. And the trial was conducted across six countries: the U.S., South Africa, Kenya, Brazil, Mexico and Peru.

One of the tenets of Genentech's approach was to conduct the study in hospitals that were not often included as clinical trial sites, including community hospitals in New Orleans and Jamaica, Queens, that serve diverse populations and where COVID-19 was prevalent.

Highsmith said the study required distinct adaptations including reaching out to patients where they live, partnering with community hospitals to streamline a clinical trial process that was not as practiced as at some larger hospitals and adjusting the regulatory process to a remote environment to keep infection rates at bay.

"This study makes clear that addressing health disparities is addressing trust in the healthcare system," Highsmith said. "We've got to be able to build bridges with these communities to make them feel valued and respected and understood."

Beyond COVID-19, Genentech is expanding minority enrollment of patients for multiple sclerosis and Alzheimer's disease studies, Highsmith noted, adding that Alzheimer's is a disease that affects communities of color in particular.

"We want to make sure that as Alzheimer's studies are taking place, that communities of color know that this clinical research is available," Highsmith said.

The next step beyond identifying the problem of distrust is understanding the specific interactions within the healthcare system that cause medically disenfranchised people to feel that it is not designed with them in mind, Highsmith said.

"The next phase is to understand, at each interaction of the healthcare journey, where can we insert a fix?" Highsmith said. "We have to begin to put patients and communities of color at the center for us to really think about achieving health equity."

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