For decades, racial and ethnic minorities have been underrepresented in clinical trials even though they are disproportionately affected by many health problems such as diabetes and hypertension. According to the Robert A. Winn Diversity in Clinical Trials Award Program, 80% of individuals involved in clinical trials are white, compared to 58% in the US population in general, which negatively affects the care that people of color receive.
“If you look nationally, the number of people of color [in clinical trials] they’re tiny,” Dr. Robert Winn, director of the Virginia Commonwealth University Massey Cancer Center, told Yahoo News.
Estimate studies that Black Americans make up about 8% of participants in clinical trials, but represent 13% of the US population, and Account of the Hispanics for 11% in trials, although they are 16% of the national population.
“Not having that diversity in clinical trials prevents us from having information that can inform patients, caregivers and doctors about the appropriate medication that might be best for a particular patient,” Maria Apostolaros, vice president of PhRMA, a biopharmaceutical research . company, he told Yahoo News.
Experts say that the lack of diversity in the processes is due to “a distrust of the medical system by many underrepresented minority populations in the United States, and there is a historical sort of events that caused this”, John Damonti, president of the Bristol Myers Squibb Foundation. , which focuses on health equity, told Yahoo News.
The most notorious example of medical racism occurred in 1932 when doctors from the United States Public Health Service boarded the Tuskegee Syphilis Study in which hundreds of black men were used as subjects for experimentation and research.
“Tuskegee is just a really terrible example, but there have been so many examples of these types of abuses and clinical research throughout the years, especially here in the United States,” Dr. Joshua Budhu, a neurologist at Memorial Sloan Kettering Cancer Center in New. York City, he told Yahoo News.
But some doctors say that the field of health has changed for the better and the system must close the gap of diversity.
“I tell you that, at least in the field of health, we have tightened this game, people do not just say that we are going to take your organs, or we are just going to use them as a guinea pig, These days have been so long,” Winn said. “Now that we’re creating therapies and creating trials that also benefit people of color, we still have this residual mistrust.”
For racial and ethnic minorities, discrimination in health care is an issue that still plagues our society today. More than 40% of African Americans, Native Americans and Latinos have experienced unfair treatment in the medical field, according to a 2021 study by the Brookings Institution.
Along with the lack of trust, doctors say minorities have trouble accessing clinical trials. “We’re really depriving people of front-line therapy,” Budhu said. “Another kind of practical point about why the diversity of clinical trials is important is that it actually saves a lot of money.”
A 2022 study from the University of Southern California found that clinical trials save lives and money. “Health disparities in general cost trillions of dollars, but just improving the diversity of clinical trials, which helps reduce health disparities, will actually save billions of dollars,” Budhu said.
“If just 1% of health disparities were alleviated by improved diversity in clinical trials, this would result in more than $40 billion in gains for diabetes and $60 billion for heart disease,” Dana Goldman, founding director of the Schaeffer Center for Health Policy and. economics at USC, he wrote in an article.
Winn said that in 2020, after the killing of George Floyd and the coronavirus pandemic, pharmaceutical companies had a wake-up call about the lack of diversity in clinical trials.
“Many more pharmaceutical companies, many more academic centers are not only spending more money to address this problem, but creating positions that maintain the emphasis on diversity, equity and inclusion and the importance of this and their role in clinical trials,” Winn said.
The Food and Drug Administration published additional guidance in 2022 to increase diversity in clinical trials and recommended that all trials present a Race and Ethnicity Diversity Plan in the early stages of its clinical development.
“Going forward, achieving greater diversity will be a key focus across the FDA to facilitate the development of better treatments and better ways to fight diseases that often disproportionately impact diverse communities,” FDA Commissioner Rober Califf , he said in a statement.
Meanwhile, doctors say that all entities of the health industry must work together to achieve equity in clinical trials. “This means that many actors have to come together – patient advocacy groups, hospitals, researchers, patients themselves, companies that can make new medications such as pharmaceutical companies or device manufacturers, and even the federal government,” said Budhu. “I think it has to be a multi-pronged approach.“