Education, empowerment, community at first Black MS Summit

On a brutally windy Saturday morning, more than 50 people with multiple sclerosis and related disorders and their family members gathered at the Jacobs School of Medicine and Biomedical Sciences for the school’s first Black MS Summit: Keys to Living Your Best Self with MS.

Organized by the Jacobs MS Center for Treatment and Research, housed in the Department of Neurology in the Jacobs School, the summit was described by organizers as “a day of education, empowerment and community.”

Free and open to the public, the summit explored a range of topics affecting African Americans with MS, from risk factors and health care disparities to how to get more diverse patients into drug trials, as well as how nutrition and exercise contribute to healthier outcomes.

Penny Pennington, director of development and program management for the Jacobs MS Center, described how plans for the summit began with the assembling of a community advisory committee of Black MS patients who helped create the agenda.

A recurring theme was the fact that until the past couple of decades, the conventional thinking about MS among physicians was that it was primarily a disease of people of northern European descent.

“People didn’t realize that MS affects everybody,” said Fred D. Archer III, associate dean of admissions in the Jacobs School, who made opening remarks.

He said the summit itself demonstrated how the Jacobs School is strengthening its focus on the priorities of the community. “The conversation is changing,” he said. “People are listening.”

Pastor George Nicholas, CEO of the Buffalo Center for Health Equity, said recent research shows there’s been a significant increase in MS in the African American community; but too often, these patients get diagnosed later than whites.

“We find that with MS there are health disparities like with every other chronic disease,” he said. “So what are we going to do about it?”

Nicholas talked about a shift he has observed at the university over the past decade, with UB’s establishment of the Community Health Equity Research Institute and a more inclusive approach. 

“The conversation about the health of Black people has been elevated into a conversation about the health of this region,” he said. “Social determinants of health are real; our lived experiences are real. Pain, suffering and trauma related to structural racism is real.”

He talked about the concept of weathering: “That’s the day-to-day grind of dealing with systems, institutions and real-life experiences that fail to see the full humanity of Black Americans. It makes it more difficult to fight disease.

“We have to put those kinds of experiences in the room. That’s the only way we can get to health equity,” Nicholas said. “Ignore it and we won’t be able to move the needle.”

The summit was an attempt to begin to do that for Black Western New Yorkers with MS.

More than a decade ago, UB researchers, led by Bianca Weinstock-Guttman, SUNY Distinguished Professor in the Department of Neurology, documented the increased severity of MS disease in African Americans based on magnetic resonance imaging findings.

Guttman spoke at the summit about recent studies that debunk the myth that the incidence of MS is lower among African Americans. In fact, recent research shows that Black women are at the highest risk of new diagnosis and that African Americans experience more aggressive disease.

African Americans with MS, she said, have been found to have a third fewer visits to a neurologist than whites and that figure is even lower among Hispanics; at the same time, they experience more emergency department visits.

The good news, she said, is that MS diagnosis is now much faster, with most neurologists able to diagnose MS the first year that symptoms appear.

“We have 26 medications for MS,” she said, another positive sign. Unfortunately, very few African Americans have participated in those clinical trials.

Addressing these and other disparities in MS will take time but there is progress. Guttman and her team recently implemented an MS Health Equity Program, with funding from the Mother Cabrini Health Foundation, that focuses on overcoming barriers to early diagnosis and on optimum disease-management through physician and patient educational programs.

She talked about the importance of MRIs for diagnosis. Some attendees noted that imaging tests are sometimes denied by insurance. Guttman agreed those denials are problematic and that the price of an MRI can vary between facilities.

Lifestyle and disease management was the focus of the talk by Dejan Jakimovski, research assistant professor in the Department of Neurology. He talked about how smoking and obesity put people at increased risk of developing MS and may cause faster MS disease progression.

Insufficient Vitamin D is also seen as a risk factor, which is why MS incidence is higher in northern regions, where there isn’t as much sunlight. Jakimovski also noted that some studies have shown that people with darker skin may require more Vitamin D than people with lighter skin.

In terms of dietary effects, more recent studies have shown beneficial effects of the Mediterranean diet in MS patients on measurements of fatigue, cognition and even MRI parameters.

Additional topics that were discussed include how exercise and nutrition can help patients fight fatigue and the importance of peer support, as well as how to attract more diverse patients into clinical trials for MS treatments.

And to drive home the messages about health and empowerment, refreshments were served by local Black-owned businesses, including Unapologetic Coffee, Go Veggies, Evalina’s Kitchen and Sunshine Vegan Eats.

Sponsors of UB’s first Black MS summit included Bristol-Myers Squibb, EMD Serono, Genentech, Novartis and IGI Therapeutics, as well as the National MS Society.