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.”