Based on the latest estimates, about 1,000,000 people in the US have multiple sclerosis (MS). We don’t know for sure how many of those are African American. There’s no national registry for MS patients, so data is limited. But studies show that MS can be especially active in African Americans.
MS research is now seeing and studying more diverse faces. And the occurrence of MS in ethnic minorities may be more common than we thought.
Over the past 10 years, a growing body of research has drawn attention to MS in the African American community. A 2013 study suggested that the risk for MS is highest in African American women. Other studies have looked at some of the differences in African American patients compared with white patients.
When we try to understand patterns across a disease population, we break patients out by different traits. This is also called grouping by phenotype. It helps us learn more about the disease in general. It may also help us develop better treatment strategies for people living with MS.
To learn about disease patterns in African Americans, we can start by looking at MS in the Black African population:
We see similar patterns in the African American population:
Most of the studies that reported these differences looked back at patients who were already diagnosed and treated, and examined their characteristics. There are limits to these studies. They don’t look at the differences in access to care. And they don’t look at other cultural and environmental factors that may contribute to MS getting worse over time.
A better way to confirm this data is to look at things moving forward. This means starting with patients diagnosed at the same time. We then follow them over time to see if we get the same results. But there is a low rate of enrollment in clinical trials for MS amongst minorities This may be due to several things, including:
Taking part in research is important. Participation in MS research by ethnic minorities is very low. In some cases, it’s less than 1%. Some analysis suggests African Americans may be less responsive to relapsing MS treatments. But it’s hard to say based on the small numbers of people taking part. Greater involvement in clinical trials could help us find out how well a specific treatment worked across different ethnic groups.
If you’re living with MS, be your own advocate. Gather information about ways you can contribute to knowledge of MS. Please keep in mind if you’re looking for information, your healthcare provider is always your primary resource when it comes to your MS and your treatment. You could also consider researching clinical trials or even taking part in research surveys. We’re all in this together. And together, we can learn more about MS.