Black participation in clinical trials for multiple sclerosis (MS) is critical to finding new therapies to improve outcomes for those with the disease.
MS an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and the body. The exact cause of MS is currently unknown, and symptoms can vary from person to person, and from day to day in the same person.
Historically, MS has been thought to primarily affect Whites. But recent studies have shown that Blacks have an increased risk of being diagnosed with MS compared with White, Hispanic, or Asian patients. Studies also have found there are critical differences in Black and White populations with MS in disease severity, response to therapies, and access to specialty care. That’s why Black participation in clinical trials is essential in improving outcomes for those with the disease.
Clinical trials for those with MS have grown rapidly, particularly over the past two decades, shared Dr. Farrah J. Mateen, an associate professor of neurology at Harvard Medical School who practices at Massachusetts General Hospital, in a recent study. As a result, the number of disease modifying therapies has also expanded.
But most clinical research on MS has not included a significant number of Black participants. A 2015 review showed that out of nearly 60,000 published articles about MS, only 113 focused on Blacks. While they represent 13.5% of the US population, Blacks have made up only about 5% of trial participants for MS treatments, according to the National Multiple Sclerosis Society.
The impact of that absence cannot be underestimated. “Because there was relatively low enrollment of Black people in the studies that led to the approval of most of the drug treatments now available for MS, we don’t have a good understanding of whether or not Black people respond differently to these therapies,” says Dr. Mitzi Joi Williams, a neurologist who is passionate about educating and empowering people affected by MS, in her blog post titled “Why You Should Be Participating in Multiple Sclerosis Research.”
She laments the lack of Black participation in these studies, particularly when clinical trials are concentrated in academic, usually urbanized centers where there is highly diverse racial representation.
There is the reality of Blacks not wanting to participate in clinical trials because of historical mistrust. Dr. Williams understands the trepidation, but asserts that things have changed. “Research trial protocols are rigorously reviewed to ensure that human rights are not violated, and that all work done is ethical,” she says in her blog post.
Some Blacks with MS have been vocal about their inclusion in MS research. In a Momentum Magazine article “Black Women With MS Speak Up,” Antoinette Pick-Jones, an attorney who was diagnosed with MS in 2019, says medical professionals had initially asked about lupus, HIV, and sickle cell anemia—not MS. That’s particularly concerning given that MS risk is highest in Black women, based on a study by Kaiser Permanente Southern California.
“When research is done, it would be nice to know if any Black women were included in the study,” continues Pick-Jones. “That way, maybe when a Black woman comes to the doctor, the first thing they’re thinking is not HIV. Maybe they’re thinking MS a little sooner.”
In the meantime, medical professionals continue to find new ways to ensure Black participation in clinical MS trials and other types of research. “As clinicians and researchers, we must be intentional in making sure that the populations we study and research reflect the type of patients that we see,” says Dr. Williams in her blog post. “In order for science to truly progress toward more effective prevention and treatments for diverse communities, we all have to be a part of the solution.”
Interested in participating in a clinical trial? Ask your doctor about research opportunities or check reputable websites of established MS organizations.
Supported by Sanofi, but not responsible for content. Sanofi has ongoing clinical trials in multiple sclerosis and is committed to designing and conducting clinical trials with clear diversity targets so that trial populations reflect demographics of the disease being studied. They do this through gaining diverse patient insights into trial design, selecting sites in underserved populations, training investigators, partnering with local communities, patient groups, and organizations, and leveraging technology to expand access. To learn more about their trials, visit Multiple Sclerosis Clinical Research Studies | Sanofi Studies.