WAI MENTIONED IN BRAIN & LIFE WINTER ISSUE

Read about why organizations such as WAI are essential when it comes to making an MS diagnosis easier on Black people.

FEATURES MULTIPLE SCLEROSIS SPECIAL ISSUE, WINTER 2021

Once thought to be a White person's disease, multiple sclerosis also impacts Black people—and their experience differs. These experts explain why.

When Lisa Cohen first started noticing numbness in her left hand in 2000, she chalked it up to the data entry she was doing for a promotional tour for rock bands she managed at the time. “I figured I had just pinched a nerve or something, and after a while it went away,” recalls Cohen, who is Black and lives in New York City.

But about six or seven months later, she started noticing problems with her vision. “I was booked to go on a photography trek to Morocco, and I couldn't see out of my shooting eye,” she says. “I had to use the other eye to take pictures. Then a couple of months after I returned, I woke up and the whole lower half of my body was numb. I could move, but I wasn't really feeling things.”

Her primary care physician immediately referred her to a neurologist, who diagnosed Cohen with multiple sclerosis (MS). It didn't come as a complete surprise to her. “My father's first cousin had MS, and occasionally he would come to visit,” she says. “I remember him walking with a cane and kind of shuffling. In grammar school I would always do the MS readathon fundraisers—where people would sponsor you to read books and the money would go to the National MS Society—because of my dad's cousin.”

For Cohen, the diagnosis was almost a relief because she had feared something far worse as autoimmune diseases run in both sides of her family. Her mother had rheumatoid arthritis and scleroderma, which causes hardening of the skin and connective tissue. “My mother died five years after being diagnosed with scleroderma, and that's all I was thinking of at first,” Cohen says. “When I learned it was MS, it wasn't great, but I knew it wasn't going to kill me in five years.”

As Cohen, who is now 51, became more involved with the National MS Society, she encountered people who were surprised to learn that Black people get MS. “It seems like it's considered a White person's disease,” she says. “That never occurred to me because of my family experience. One of the things I've been working on with the National MS Society, with events like its Black Experience Summit, is combating that perception and raising awareness in the Black community about MS and the treatments and resources available.”

Emerging Trend

Information about who is affected by MS has been upended in recent years by studies pointing to a higher incidence of the disorder in Black people compared with White people. “These studies suggest that the risk of developing MS is up to 47 percent higher in Black women compared with White men or women, and the incidence of MS is at least as high in Black men as among their White counterparts,” says Mitzi Joi Williams, MD, founder and CEO of Joi Life Wellness Group Multiple Sclerosis Center in Atlanta. “The old notion that MS is a young White woman's disease continues to affect how soon Black people are diagnosed and how they are treated.”

Most neurologists who specialize in MS are aware of these new data, but doctors outside the field may not be, says Sylvia Klineova, MD, assistant professor of neurology at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Icahn School of Medicine at Mount Sinai in New York City. “Many doctors practicing today were taught in medical school that MS is rare among Black Americans, and many did not get properly diagnosed based on that belief,” says Dr. Klineova, who conducts research on MS in the Black population. “We are now diagnosing earlier, more accurately, and in higher numbers, but the diagnosis still often happens later among Black people than among White people. Black people still don't have access to specialized care at the level that White people do, and there is not enough education [about MS] in the community.”

Dr. Klineova has treated many young Black women who first went to emergency departments with their symptoms and were told they were experiencing minor nerve problems or given another incorrect diagnosis. “That deterred them from seeking specialty care until they had more significant symptoms of disability,” she says.

Such delays may be part of the reason that Black people with MS tend to experience more frequent relapses and worse recovery from those relapses, according to studies. That research, which includes a 2019 review in Current Neurology and Neuroscience Reports and a 2018 study in Brain, also showed that Black people with MS have earlier signs of disability and more problems with walking and coordination than White people.

For people of all races with MS, research has found that treatment with disease-modifying therapies (DMTs) after the first attack may prevent future flare-ups and possibly slow disease progression. A 2018 guideline from the American Academy of Neurology notes that current research supports counseling patients about DMTs as early as possible.

“The literature suggests that Black people with MS have more walking disability and earlier progression of their disease, but we don't have a good understanding of why,” Dr. Williams says. “It could be due to biological differences or to socioeconomic conditions and less access to health care services.”

Annette Langer-Gould, MD, PhD, an MS specialist at Los Angeles Medical Center, agrees that access to quality health care is a problem. “Symptoms often start when people are in their twenties,” she notes. “That's a time when many people don't have health insurance, especially if they are from a disadvantaged population. Then their symptoms are dismissed, there are delays in diagnosis, and when they finally do see a neurologist, that person may not be a specialist.”

That's what happened to Patrick Prevost, now 53, who first started experiencing strange motor symptoms when he was in high school in Queens, NY, where he still lives. “I was playing basketball when I was 17, and for no apparent reason I just fell to the ground,” he recalls. “I had no idea what had happened. I jumped right up and acted like it was nothing. I was kind of embarrassed.”