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.”

Over the years, the movement symptoms came and went. “Sometimes my body would move without my wanting it to. I'd shake like I had the chills or something. But I never went to the doctor to get it checked out. I thought it would just go away,” Prevost says. “Finally, in 2006, I was on my way to work and I didn't feel like I even had the energy to get up the block. I had to turn around and go home.”

After falling on the way home, Prevost went to the emergency department and was referred to a physical therapist for his injuries. When he didn't seem to improve, the therapist suggested he see a neurologist, who diagnosed him with multiple sclerosis in August 2006—more than 20 years after his first symptoms.

“I'd never heard of MS before that day,” he says. “Although when I told my best friend about it, he said that when he'd seen me walking unsteadily at his wedding, he thought it might be MS, but he didn't want to say anything.”

Over the years, Prevost cycled through several DMTs but felt he wasn't getting “whole-person” care for his disease. Finally, a friend in an MS support group suggested he go to the Multiple Sclerosis Comprehensive Care Center at NYU Langone Health. That's where he came under the care of an MS specialist and started taking ocrelizumab (Ocrevus). He also received support from other programs within the center, including occupational and physical therapy. His more specialized care gave him the confidence to pursue a dream he had postponed for years: earning a college degree in criminal justice, which he received in 2015.

Fewer Black Subjects in Trials

Most clinical research on MS has not included a significant number of Black participants. A 2015 review showed that out of nearly 60,000 published articles about MS, only 113 focused on Black people. While they represent 13.5 percent of the United States population, Black people have made up only about 5 percent of trial participants for MS treatments, according to the National Multiple Sclerosis Society.

“Because there was relatively low enrollment of Black people in the studies that led to the approval of most of the drug treatments now available for MS, we don't have a good understanding of whether or not Black people respond differently to these therapies,” Dr. Williams says.

Dr. Klineova is one of the lead investigators on a five-year study at Mount Sinai of how MS presents and progresses in Black patients as compared with White patients, but the project still has three years before it will be completed.

“There is a long, sordid record of discrimination and malignancy in the way research was done in the past,” says Dr. Williams. “There has to be reassurance about how the process works and an understanding about the benefits of participating in research, not only to the individual but to the community.

“We can't go back and change the studies that have already been done, but we can still use real-world studies to assess the efficacy of these therapies already on the market in Black patients,” she adds.

For example, the ESTEEM trial, which was led by Dr. Williams and studied the safety and effectiveness of dimethyl fumarate (Tecfidera) in Black patients with MS, found that patients experienced significantly lower relapse rates in the 24 months after starting treatment with that drug than in the year before treatment. And the new CHIMES clinical trial of ocrelizumab is the first to focus on how an MS treatment affects underrepresented groups, specifically African Americans and Latinos. Dr. Williams is also a lead investigator for CHIMES, which began recruiting in July 2020 and includes in its 30 study sites several MS centers that serve underrepresented populations. Even with the logistical challenges posed by COVID-19, recruitment of the 150 to 200 participants is on target to be complete by the middle of 2021.

A new national registry, launched last September, aims to collect data from 25,000 Black people with MS across the United States. The goals of the National African American Multiple Sclerosis Registry are to estimate the number and geographic distribution of African Americans with MS, determine if there are barriers to care, and suggest strategies to undo inequities of access.

“We also will provide registrants with information about how they can participate in ongoing MS clinical trials,” says Stanley Cohan, MD, PhD, who developed the registry and is now a member of the steering committee along with Dr. Williams and other MS specialists. “Only about 1 percent of participants in national trials of multiple sclerosis therapies are African American, which deprives us of important knowledge of whether or not Black people respond differently to specific treatments,” says Dr. Cohan, director of the Providence Multiple Sclerosis Center in Oregon.

While awaiting further data from these trials and registries, Dr. Langer-Gould stresses the importance of early diagnosis and treatment with DMTs such as ocrelizumab, natalizumab (Tysabri), and the off-label rituximab (Ruxience). “It's all about getting people on the right drug soon enough,” she says. “If you've ever had any difficulty walking or a balance disturbance, even if it got better after a relapse, talk with your doctor about getting on a highly effective therapy.”

“Many Black patients are under-treated,” says Dr. Williams. “I'm a big proponent of seeking second opinions. In some cases, I even encourage it among my own patients. If you aren't treated by an MS specialist, it could be helpful to see one at least once in the course of your disease and get his or her opinion, even if you stay with your general neurologist. You have to be your own advocate.”

Move Ahead

Lisa Cohen has become very good at advocating for herself—and encouraging others to do the same. In the two decades since her diagnosis, she has experienced several relapses and progressive physical disability. After Cohen spent several years on interferon beta-1b (Betaseron), her neurologist switched her to natalizumab in 2012, and she's now stable. “I've gotten worse, but I haven't gotten extremely worse,” she says.

Cohen, who's become a regular volunteer with the National MS Society, wrote Overcome the BS of MS: A Three-Step Plan for Women Living with Multiple Sclerosis (CreateSpace Publishing, 2015). She also launched, with a friend who is a makeup artist, a series of workshops called Makeover Your MS—and eventually expanded it into a life-coaching venture known as Rockstar Women with MS.

Patrick Prevost now uses a wheelchair and scooter to get around and had to give up his job as a paratransit driver. He runs MS Finest, a racially diverse Queens-based support group of men and women ranging in age from 30 to 60 that's affiliated with the National MS Society. He also served on the inaugural committee for the National MS Society's first annual African American conference. “When you have MS, you can still do what you want to do,” Prevost says. “You'll have to make modifications—it's not going to be the same as it was before—but you can still live your life.” He continues to bowl, with the help of a special apparatus, and swim regularly, using a chairlift to get in and out of the pool. “There is reason to be hopeful. Your life will go on.”

Cohen agrees. Her most important piece of advice for others with MS, and Black people in particular? “Don't give up. I wish that long ago somebody had encouraged me to not think that I had to stop doing what I wanted to do and stop having ambitions.”

She remembers going to an MS support group soon after her diagnosis and talking about projects she was working on, only to have the well-meaning group leader put a hand on her arm and say, “It's okay, you don't have to do all those things. You're sick.”

“Holy cow! If I had had messages to counter that,” Cohen says, “it would have stopped the fear snowballing and I wouldn't have spent several years waiting on the sidelines for another shoe to drop. I've had some amazing experiences since my diagnosis and even after I started to be disabled. I did an ad campaign for the National MS Society, and I was on a billboard in Times Square for a week. Your life is not over because you've been diagnosed with MS. Amazing stuff can happen!”

Multiple Sclerosis Resources

These online resources are useful for anyone with multiple sclerosis (MS) but may be especially relevant for those in the Black community.

• No Stress MS: This YouTube vlog is produced by actor-rapper Damian Washington, who was diagnosed with MS several years ago. youtube.com
• Myelin and Melanin: The podcast is hosted by Dawn Morgan, who was diagnosed with MS in 2000, and Daana Townsend, who was diagnosed in 2004. myelinandmelanin.com
• Real Talk MS: Jon Strum, whose wife was diagnosed with secondary progressive MS in 1997 and died in February 2020, hosts this podcast. realtalkms.com
• We Are Illmatic: Founded by Victoria Reese, who was diagnosed in 2012, this patient advocacy organization focuses on Black women with MS. weareillmatic.com