By Brie Zeltner and Rachel Dissell
CLEVELAND, Ohio – Dr. Jackson Wright is successful at recruiting Black patients to participate in his research studies. That’s in part because he — and much of his team — look like them.
Considered a global authority on high blood pressure and heart disease, Wright is familiar with the deep-seated distrust many Black Americans have with medical research. That’s because of past exploitation, including but not limited to the 40-year Tuskegee Syphilis Study, which starting in 1932 followed the effects of untreated syphilis in Black Alabama men without their consent and withheld treatments that became available.
Memories of that betrayal have lingered for generations. Black adults are still less likely to get seasonal flu shots than white ones. When it comes to preventive health, Black Americans are less likely to trust their doctors, and consequently less likely to seek preventive care such as mammograms and other cancer screenings, as well as routine care, according to multiple studies.
At the same time, having Black patients included in clinical trials and medical studies is critical to reducing current health disparities in Black communities, said Wright, a University Hospitals internal medicine doctor and professor (now emeritus) of medicine at Case Western Reserve University School of Medicine.
That includes the disproportionate impact of COVID-19 in America’s Black and Latinx communities, where people have been three times as likely as their white neighbors to be infected by the coronavirus and are nearly twice as likely than whites to die from it, according to data from the CDC analyzed by The New York Times.
Black Ohioans make up 14% of the state’s population but almost a quarter of COVID-19 cases, more than a third of the hospitalizations and 19% of deaths. In Cleveland, 60% of the deaths reported from COVID-19 have been Black residents, though they make up only about half of the city’s population.
Though patients often mention Tuskegee, more recent experiences or perceptions of medical institutions may be just as important, Wright said.
Other abuses, like failure of researchers to get permission from nor to inform Henrietta Lacks, a Black cancer patient, about the use and reproduction of her cells, have been highlighted in books and movies in recent years.
“We don’t have to go back to 1932,” Wright said. “We can probably just look at the issues today.”
Historical misrust is reinforced by more recent experiences with health systems and other broader discrimination, researchers found in 2015.
Black adults across a range of ages and incomes equated medical research with being treated like a “guinea pig.” Many believed the research would not benefit the Black community and shared examples of their friends or families getting second-rate medical treatment.
High-profile examples also resonate, such as tennis legend Serena Williams’ near-death experience after giving birth to her daughter, Olympia, in 2018. Williams recognized the signs of a dangerous blood clot but had to convince doctors and nurses to act quickly and order a scan revealing the problem.
In Cleveland, those perceptions are influenced by issues like the shorter life spans of residents who live in mostly-minority neighborhoods within a mile or so of the heart of local medical research — the campuses of Cleveland Clinic, University Hospitals and Case Western Reserve University — compared with people in suburbs just a few miles away.
More trust in Black doctors
Since the 1990s, Wright has studied high blood pressure, also called hypertension, which is more common in Black populations than in white and when left untreated increases the risk of heart attack, heart failure and sudden cardiac death.
“It’s much easier for me to approach a Black patient about participating in a study looking at issues that affect the Black population,” Wright said.
He’s led research studies on optimal blood pressure in which 35% of the participants were Black, and on the management of hypertension in which all of the participants were Black.
That’s higher than the overall enrollment for Black participants in clinical trials, which was about 14%, according to a 2017 U.S. Food and Drug Administration report.
In 2019, enrollment in clinical trials for new drugs was 9% Black, according to an FDA report created, in part, to track participation as a way to increase diversity.
A major factor for patients is whether they can trust the person asking them to take a potentially significant risk and to commit time to the effort, Wright said.
Research affirms a higher level of comfort with Black doctors. A study of 1,300 Black patients recruited from barbershops and flea markets around Oakland, California, found that when randomly assigned to doctors — some Black and some non-Black — patients were more likely to agree to invasive tests to screen for diabetes or cholesterol if recommended by Black doctors, and they were more likely to share health concerns with them, too.
Differences in immune system responses
In America, younger Black adults are 50% more likely to have high blood pressure and twice as likely to die from heart disease than their white counterparts, according to the U.S. Centers for Disease Control and Prevention. Before age 50, the heart-failure rate among Black Americans is 20 times higher than that of whites, according to a 2009 study in the New England Journal of Medicine.
Genetically, there’s little difference between white, Black and Hispanic people that could account for such disparate health outcomes. Much of increased risk among Black people can be traced to lack of routine primary care and higher rates of conditions, such as obesity and diabetes, that aggravate heart conditions. Other disparities are linked to an array of social determinants of health, like air quality, neighborhood conditions, poverty and toxic stress.
While it was once assumed that heart-disease symptoms and the best ways to treat and manage high blood pressure were the same for all people, Wright and other doctors discovered this was not the case after they pushed for more Black patients to be included in large-scale clinical trials and population-specific research on the disease.
Most medications available to treat serious health problems have been predominantly tested in white men, said Dr. Charles Modlin, a Cleveland Clinic kidney transplant surgeon and urologist.
Responses to the medications can vary, though, said Modlin, director of the Minority Men’s Health Center in Cleveland Clinic’s Glickman Urological & Kidney Institute.
For example, a medication called BiDil used to treat congestive heart failure alongside other standard therapeutics reduced death rates in Black patients by more than 40%, while having virtually no effect in white patients.
The difference in response to a medication by race may be due to slightly different types or amounts of the proteins in the liver that break down medications, a factor that wasn’t recognized until Black populations were more widely studied.
Stress and environmental issues can also result in lower immune-system reactions and result in a greater susceptibility to influenza and other infectious diseases — such as COVID-19.
Once infected with the coronavirus, Modlin said, there’s some evidence that Black patients have a higher immune response that causes tissue damage in the lungs and kidneys — which makes the cases more serious and patients more likely to end up on a respirator or die.
Men’s health fair and other efforts
While it’s clear that having Black patients involved in studies of treatments and medications is important, that doesn’t mean doctors and researchers can overcome suspicions or other barriers to clinical trial participation overnight.
For Modlin, who is Black, it has taken years of effort. When he helped create the Clinic’s Minority Men’s Health Fair in 2003, it drew about 35 participants. In recent years, more than 1,500 men have shown up for the event, which offers free health and dental screenings.
In addition to the annual health fair, the hospital also opened a Minority Men’s Health Center, which Modlin directs.
The day the center opened, he recalls finding a man waiting for him. George Fraser, an entrepreneur and author, had come to scope out the operation, not just for himself but for others and in his community.
Said Modlin: “He told me point blank, he said he was coming in to check this thing out to see if it was legitimate.”
And Fraser wasn’t the only one. “A lot of people were in disbelief that Cleveland Clinic would actually start something like this. We actually had to win over a number of these representatives, leaders of the Black community, before they would actually endorse and then relate out to their networks, their colleagues, their families, communities, that this was a legitimate program,” Modlin said.
Fraser, 75, considers himself a community elder — an influencer of sorts — and said he believes Black professionals have an obligation to give back to their communities. He tested Modlin with this question: Are you serving yourself or are you serving your community?
The doctor passed the test “with flying colors,” Fraser said, because he navigated the Clinic power structure to build something that served Black men. “He’s not pontificating ad nauseam about our issues, he’s actually doing something about it,” he said.
Fraser saw those actions as essential for creating connections and trust with a doctor and, therefore, an institution.
The Clinic also has expanded minority focused care for stroke patients, respiratory issues and dermatology and has plans for outreach to the surrounding Black community when it opens its new biorepository to collect and store specimens and samples used in medical research.
Modlin said there aren’t measures he can point to yet, aside from anecdotally, of how many health fair participants or center patients form long-term relationships with physicians or the Clinic.
But one thing that sticks out to him: The number of men who come in for prostate exams — not something men generally look forward to — speaks to the value of improving health literacy and an understanding of the importance of early detection of the disease.
To Modlin, the men who show up and those who keep coming back are “testament and evidence that we have been successful in building trust between men of color, their families and the community.”
Similar efforts must be accelerated now that the pandemic has “unmasked the existence of health care disparities for the nation as a whole,” said Modlin, who sits on Gov. Mike DeWine’s Minority Health Strike Force. The group issued 35 recommendations to DeWine to address health inequities in Ohio, including making available to the public health data broken down by race and ethnicity publicly available and tracking the same information for medical professionals licensed in the state. (Read the report here.)
“Many of us have known about the health care disparities for decades. But [COVID-19] has actually given us an opportunity to raise awareness and put elimination of health disparities and health equity and addressing social determinants of health on the front page,” he said.
This series is a partnership between the Northeast Ohio Solutions Journalism Collaborative and The Cleveland Observer. It is presented as part of ideastream’s Coping With COVID-19 project, which is funded by the Third Federal Foundation and University Settlement.