This is an unparalleled time in the field of MS research because we have a better understanding of how MS behaves in various patient populations, including the Black community. For decades, experts believed 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
Low 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 may 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, fatigue, and sensory issues 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 compared to White people living with MS. For instance, Black people may be older at the time of diagnosis, experience more severe symptoms, and have faster disease progression, including an increased risk of secondary progressive MS. They also are 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 with an even greater risk of cane dependency.4,5
These 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 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.
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 that recognizes diversity in MS and provides culturally-relevant resources to enable better MS care.
Recently we 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 becoming an active participant in your 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) and Dana Spencer (Genentech diversity & inclusion board member):
Hear from the group as they discuss personal experiences with MS as Black women.
You are the best expert of your own body and MS, which is different for each person.
Learn more from the group about becoming an active participant in your healthcare journey.
The group discusses the importance of finding strength and embracing vulnerability within the Black MS community.
We know all too well that healthcare is not always equitable and that the Black and Hispanic / Latinx communities often face inequalities that lead to less access and worse health outcomes. We’re doing our part to combat this reality and working with patients and other stakeholders to ensure we’re engaged on this critical issue.
We’re making a significant investment in advancing the care of underrepresented people with MS and are proud to be making progress through initiatives that advance inclusive research by providing culturally and linguistically relevant support and education. For example, we’re conducting a Phase IV CHIMES study – the first-ever clinical trial to focus exclusively on Black and Hispanic / Latinx people living with MS in the U.S. and have also launched #MSVisibility, a program that recognizes diversity in MS and provides culturally-relevant resources to enable better MS care.
5 Steps for MS Care, According to Dr. Mitzi Joi Williams
Check out tips on how Black people living with MS can best advocate for their health.
Dr. Mitzi Joi Williams and Damian Washington share their perspective on the importance of diverse representation in MS clinical research.
#MSVisibility: Strength and Support for the MS Community
In 2021, Genentech hosted its first-ever #MSVisibility Virtual Concert to unite and shine a light on the MS community during the pandemic.
Learn about Accelerated Cure Project’s innovative approach to accelerating MS research.
Check out resources from Can Do MS that can help you recognize and address inequities in MS care.
Consortium of MS Centers (CMSC)
People with MS have a TEAM; Teamworks provides them with care and caring.
International Organization of Multiple Sclerosis Nurses (IOMSN)
Learn more about the resources IOMSN offer to help improve the lives of all those affected by MS.
Learn more about the services that MSAA offers for people with MS, their families and their care partners.
Check out the programs and services MS Focus offers to help families achieve the best quality of life.
Check out how MS Views and News works to empower and enhance the quality of life for the MS community.
Check out how the National MS Society is working to ensure that no one has to face MS alone.
Click here for more information around how Race to Erase MS is dedicated to helping those affected by MS.
United Spinal Association offers resources and peer support for wheelchair users to ensure independence!
Check out how We Are ILL strives to support, educate and unite Black women affected by MS.
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