Researchers in California have published a scientific study refuting the once-held belief that MS is a disease that primarily affects white people. The study, funded in part by the National MS Society, showed that MS is as common in Black and white people in Southern California. This and other studies highlight the role of systemic racism in fueling misconceptions about the effects of MS on people of color.
About the Study
Dr. Annette Langer-Gould (Southern California Permanente Medical Group) led the study that looked back at electronic medical records of more than 2.6 million individuals representing a diverse population enrolled in a Kaiser Permanente Southern California health insurance plan. The team identified 3863 people who had MS in 2010 and analyzed their race, ethnicity, age, and other characteristics, and then estimated the prevalence of MS (the number of people living with a diagnosis of MS at a particular point in time, in a particular place) based on the study’s data and census figures. Some key findings include:
More research is underway on race and MS
- The estimated prevalence of MS in Black people and white people were similar, and higher than expected.
- MS prevalence per 100,000 people was similarly high, estimated at 226 per 100,000 Black people and 238 per 100,000 white people (a difference that was not statistically different).
- Previous studies have also suggested that Black people with MS may have worse disability from the disease.
- MS prevalence appeared to be lower among Hispanic/Latinx and Asian American people compared to that for Black and white people, estimated at 70 per 100,000 Hispanic/Latinx people and 23 per 100,000 Asian American people.
- Other studies have suggested that the risk of MS is growing among Hispanic/Latinx people, particularly in first- and second-generation Americans. The authors point out that the relatively low risk of MS in Asian Americans is consistent with previous findings in other settings, countries, and Asian ethnicities.
- The authors note that more research is needed, as racial and ethnic terms are not necessarily based on biology, and actual risks for getting MS are likely influenced by differences in broad cultural and ancestral backgrounds.
- They also note that their estimated prevalence figures may underestimate the actual prevalence in the United States, given that their study population was in Southern California, and MS is thought to be more prevalent in northern regions of the world.
This and other studies point to the need for additional research, now underway, to better understand the risks of MS in diverse populations so that earlier diagnosis and treatment can reduce the impacts of the disease on quality of life. The U.S. MS Prevalence Workgroup, supported by the National MS Society, is continuing the efforts that led to their revised estimate that there are nearly 1 million people living with MS in the U.S.
The workgroup is now taking a more thorough look at age, race, ethnicity, and gender of people living with MS and estimating their numbers in different parts of the U.S. Additional details will become available when the prevalence workgroup's paper is published.
Historic misconceptions about MS and race
Results of this study point to the profound impact structural racism, healthcare inequities and lack of representation in clinical research have had in driving misconceptions about the prevalence of MS on historically underserved and underrepresented populations.
In an editorial that accompanies the paper, Dr. Roy Hamilton (University of Pennsylvania) and Dr. Olga Ciccarelli (University College London) note that this study provides more evidence that should help dispel racial medical myths: “While many MS researchers and clinical specialists now recognize that Black patients are also at risk of developing MS, generations of neurologists have been trained to think otherwise, contributing to the underdiagnosis of MS in Black persons.”
Early diagnosis and treatment are critical to minimizing progression in MS, which is why it’s important to increase public understanding that MS is a disease that can affect anyone, regardless of race.
“For far too long MS was believed to be a white person’s disease—a problematic mistruth that our own organization played a role in perpetuating,” said Dr. Tim Coetzee, Chief Advocacy, Services & Science Officer for the National MS Society. “Today, we’re focused on using our knowledge and influence to correct the false narrative that has kept historically and systematically oppressed populations from accessing quality healthcare. We are committed to addressing these inequities in our healthcare system so that everyone can get what they need to live their best lives.
Learn more about MS in the Black community
Learn more about MS in Hispanic/Latinx community
“Racial and Ethnic Disparities in Multiple Sclerosis Prevalence
,” by Annette M. Langer-Gould, Edlin Grisell Gonzales, Jessica B Smith, Bonnie H Li, and Lorene M. Nelson, was published in the April 27, 2022, online issue of Neurology
, the medical journal of the American Academy of Neurology.