MS In Communities of Color: Giving Voice to the Underrepresented

By Mary Gotschall

July 18, 2020

When she was diagnosed at age 16 with MS, Kamilah Martin-Proctor

found herself at a loss when it came to figuring out the path forward for

someone like her with the disease.

She was a young African-American woman in high school—yet all the

information she could obtain about MS came from Caucasian women,

married with children, who could not relate to Martin-Proctor’s life

experience.


“Nobody could tell me how these medications and studies affected

people of color,” she commented. So, in response, she started a small

support group and began doing strategic outreach. The group is called

the Martin MS Alliance Foundation ( www.manyfacesofms.org ).

MS Insight’s new video, titled “MS in Communities of Color” features

an interview with Martin- Proctor. She talked about the different

outreach that her group provides.


There are four areas, each offering different services:

- Equal Access Education – Providing key information about new

medications and treatment for MS patients, particularly relevant to

people of color;

- Careers, Not Jobs – Encouraging members to pursue their career

dreams and not be held back by their disability;

- Accessible Communities – Making sure individuals have access to

social and cultural events, while managing their illness;

- Emergency Base - Furnishing information to members about how

to manage their MS during emergencies, such as the COVID-19

pandemic.

Martin-Proctor engaged in a lively discussion on the video with MS

Insight staff. She noted that people of color—including African-


Americans, Hispanics, and those of Middle Eastern background—often

have a more severe course of MS than white people, and scientists are

not sure why. She hypothesized that it was at least partly due to

socioeconomic factors, stress and anxiety and “living in a society that is

not optimally welcoming.”


Dr. Jonathan Merril, M.D., Education Director at MS Insight and

moderator of the discussion, asked her about educational initiatives in

her group. Martin-Proctor said the organization has education

ambassadors who go through a 4-6 week program in spring and fall.

They graduate and then attend major conferences, such as the MS

Health & Fitness Conference; NAACP events; and Congressional Black

Caucus events.


“The opportunity to connect with more medical conferences and have

that voice at the table would be amazing,” she said.

Merril noted that MS Insight is Internet-based and, in the era of the

pandemic, hopes to reach out to other MS communities and work with

them to distribute content to their audiences.


There are several key issues affecting their members, noted Martin-

Proctor. A major concern is what safety protocols will be in place when

they go back to work? Some organizations are making it difficult for

people to put their health first, without losing their job. Other

organizations are resistant to telework, fearing they’ll lose control of

employees. They are bombarding employees with a barrage of

paperwork to prove that they have MS and that if they contracted

COVID-19, they would be more adversely impacted than other people.

Wendy Booker, CEO of MS Insight, said that’s a major reason why

many people don’t disclose their MS to employers.


Merril asked about usage of Disease Modifying Therapies (DMTs),

including infusion therapy, among members of Martin-Proctor’s group.

Martin-Proctor said people of color would like to utilize such infusion

therapy, but often can’t because their supervisor may not give them

time off, along with the cost, which can cost $500 and may not be

covered by insurance.


THE BENEFITS OF MOVEMENT


The topic then turned to exercise. Merril asked about the awareness

of the benefits of exercise in Martin-Proctor’s community.

She said it was important to emphasize that exercise is not just “the

traditional ‘go to a gym, pay a fee, work out with a trainer.’” It can be

salsa dancing or any type of movement. They key was to “make it fun,

economical and cultural.”


Booker, who’s an active athlete and marathon runner, concurred. She

said friendly competition can also be a powerful tool for getting people

to stick to an exercise routine and mentioned a road race for MS people

that she signed up for on Facebook. It was a great success, and people

posted on Facebook about how many miles they ran.

Merril noted that support groups could emphasize the positive

benefits of movement and its role in slowing down the progression of

the disease.


“We focus on doing one small thing,” continued Martin-Proctor. This

could be drinking one bottle of water each day for 30 days to prevent

dehydration. She also recommended the buddy system, where

members have partners who can join them in workouts

Martin-Proctor closed the interview by saying she is eager to

collaborate with MS Insight, would like to join some of the medical

conferences that MS Insight participates in, and would like to make sure

that “the voice of the underrepresented is heard.”

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