Sponsored Insight
For decades, experts believed multiple sclerosis (MS) was a disease of young, White women. However, that’s not the case. Studies show just as many Black individuals have MS as their White counterparts and the incidence may be higher, particularly in Black women, than in other ethnic populations.1,2,3
Lack of awareness of the Black MS experience is a factor that can delay diagnosis and, therefore, also interfere with getting started early on a high-efficacy disease modifying therapy that may help to slow the progression of disability — an important goal of treating MS.
MS is a progressive disease from the start for everyone, regardless of relapses. Yet, symptoms vary from person to person. Some people may be only mildly affected, while others may lose their ability to see clearly, write, speak, or walk. There are also invisible symptoms, like cognitive impairment, and fatigue that can take a physical, mental, and emotional toll and significantly impact the experience of a person living with MS.
However, there are commonalities that we are seeing in the Black MS population that are different from White people living with MS. For instance, Black people living with MS may:
- Be older at the time of diagnosis
- May experience a greater disease burden
- Have faster disease progression, including an increased risk of secondary progressive MS
- Be more likely to have more involvement of the spinal cord and optic nerve
- These factors may mean Black people have greater disability at the time of diagnosis and an even greater risk of needing to use a cane earlier than White counterparts.4,5
Differences in patient outcomes may be due to health disparities, such as social determinants of health, gaps in healthcare professional cultural competency, and the stigma associated with an “invisible” disease.6,7 Lack of representation in clinical trials across disease areas may also be contributing to health disparities, with only 5% of Black people (who make up 12% of the U.S. population) participating in clinical trials.8 More research and increasing diversity in clinical trials is needed to help better understand the MS disease course in certain populations like the Black MS community.
ADVANCING EQUITY IN MS CARE
At Genentech, we understand health inequities are complex and cannot be solved overnight. However, we are proud to be making progress through initiatives like #MSVisibility: Breaking Barriers that recognizes diversity in MS and provides culturally-relevant resources to enable better MS care.
We recently brought together an inspirational group of Black women living with or connected to MS to have an authentic conversation about their experiences, finding strength, and advocating for themselves in one’s healthcare journey.
Hear from Dr. Mitzi Joi Williams (neurologist + MS specialist), Victoria Reese (founder of We Are ILL, diagnosed in 2012), Azure Antoinette (poet and advocate, diagnosed in 2009), Brandee Evans (actor and MS caregiver for her mother), all paid Genentech spokespeople, and Dana Spencer (Genentech diversity & inclusion board member):
The Truth About the Black MS Experience
The group discusses personal experiences with MS as Black women.
The Power of Self-Advocacy
People with MS are the best experts of their own body and condition, which is different for each person. Learn more about becoming an active participant in one’s healthcare journey.
The Strength in Vulnerability
The group discusses the importance of finding strength and embracing vulnerability within the Black MS community.
To learn more, visit gene.com/MS.
References
1. National MS Society. “Who Gets MS? – MS in the Black Community.” Retrieved November 2020.
2. Wallin et al, Brain 2012
3. Langer-Gould et al, Neurology 2013
4. Cree BA, Reich DE, Khan O, De Jager PL, Nakashima I, Takahashi T, Bar-Or A, Tong C, Hauser SL, Oksenberg JR. Modification of Multiple Sclerosis Phenotypes by African Ancestry at HLA. Arch Neurol. 2009 Feb;66(2):226-33. doi: 10.1001/archneurol.2008.541. PMID: 19204159; PMCID: PMC4334456.
5. Khan O, Williams MJ, Amezcua L, Javed A, Larsen KE, Smrtka JM. Multiple sclerosis in US minority populations: Clinical practice insights. Neurol Clin Pract. 2015 Apr;5(2):132-142. doi: 10.1212/CPJ.0000000000000112. PMID: 26137421; PMCID: PMC4404283.
6. Annette F. Okai. “Advancing Care and Outcomes for African American Patients With Multiple Sclerosis.” Neurology.
7. Lilyana Amezcua, MD, MS. “Health Disparities, Inequities, and Social Determinants of Health in Multiple Sclerosis and Related Disorders in the U.S.” JAMA Neurology.
8. U.S. Food and Drug Administration. Clinical Trials Shed Light on Minority Health. U.S. Food and Drug Administration Website. https://wayback.archive-it.org/7993/20180908114418/https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm349063.htm. Published 2018.