For decades, racial and ethnic minorities have been underrepresented in clinical trials, even as they are disproportionately affected by various 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% of the U.S. population as a whole, negatively impacting the care that people of color receive to get.
“If you look nationally, the number of people of color [in clinical trials] are miniscule,” said Dr. Robert Winn, director of the Virginia Commonwealth University Massey Cancer Center, told Yahoo News.
Studies estimate that Black Americans make up about 8% of clinical trial participants, but represent 13% of the US population, and Hispanics account for 11% in surveys, even though they make up 16% of the national population.
“If we don’t have that diversity in clinical trials, we don’t have information that can inform patients, healthcare providers and physicians alike about the right medication that might be best for a given patient,” said Maria Apostolaros, a deputy vice president at PhRMA, a biopharmaceutical research center. company, told Yahoo News.
Experts say the lack of diversity in studies is due to “a distrust in the medical system by many underrepresented minority groups in the United States, and there are historical events that have caused that,” said John Damonti, the president of the Bristol Myers Squib Foundation. , which focuses on health equity, told Yahoo News.
The most notable example of medical racism occurred in 1932 when US public health doctors embarked on the Tuskegee Syphilis Study in which hundreds of black men were used as subjects for experimentation and research.
“Tuskegee is just one really horrible example, but there have been so many examples of this kind of abuse and clinical trial over the years, especially here in the United States,” Dr. Joshua Budhu, a neurologist at Memorial Sloan Kettering Cancer Center in New York. York City, told Yahoo News.
But some doctors say the health sector has changed for the better and the system needs to close the diversity gap.
“I’ll tell you, at least on the health front, we’ve tightened up that game. People don’t just say we’re going to take your organs, or we’re just going to use you as a guinea pig, those days are so long gone,” Winn said. “As we create therapies and trials that also benefit people of color, we still have this residual distrust.”
For racial and ethnic minorities, discrimination in healthcare is a problem that still plagues our society today. According to a 2021 study by the Brookings Institute, more than 40% of African Americans, Native Americans and Latinos have experienced unfair treatment in the medical field.
Along with a lack of trust, doctors say minorities struggle to access clinical trials. “We’re actually depriving people of first-line therapy,” Budhu said. “Another kind of practical point about why diversity in clinical trials is important is that it actually saves a lot of money.”
A 2022 University of Southern California study found that clinical trials can save lives and money. “Health disparities in general cost trillions of dollars, but just by improving clinical trial diversity, which helps reduce health disparities, it will actually save billions of dollars,” Budhu said.
“Reducing just 1% of health disparities through improved diversity in clinical trials would result in more than $40 billion in benefits for diabetes and $60 billion for heart disease,” said Dana Goldman, founder and director of the Schaeffer Center. for Health Policy and Economics at USC, wrote in an article.
Winn said that in 2020, after the murder of George Floyd and the coronavirus pandemic, drug companies became aware of 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 they are also creating positions that keep the focus on diversity, equity and inclusion and their importance and role in clinical trials. said Win.
The Food and Drug Administration released additional guidance in 2022 to increase diversity in clinical trials and recommended that all trials in the early stages of clinical development submit a Race and Ethnicity Diversity Plan.
“Going forward, achieving greater diversity will be a major focus throughout the FDA to develop better treatments and better ways to combat diseases that often have a disproportionate impact on diverse communities,” said FDA Commissioner Rober Califf in a statement. declaration.
In the meantime, doctors say all health care entities must work together to achieve parity in clinical trials. “This means multiple stakeholders need to come together — patient advocacy groups, hospitals, researchers, patients themselves, companies that might make new drugs, such as drug companies or device manufacturers, as well as the federal government,” Budhu said. “I think it has to be a multifaceted approach.”
