There are more drugs available to treat MS than ever before. Wouldn’t it be great to know which ones worked best for all of us living with MS?
It never occurred to me that multiple sclerosis (MS) was a “white person’s disease.” I’ve known about MS since childhood because my father’s first cousin had it and used a cane.
I remember summer days at my grandmothers when he’d stroll several blocks to visit her with soft, shuffling steps. He was my motivation for participating in the “MS Readathon” every year in elementary school to help raise money for a cure.
When I was diagnosed with MS in 2001, I was shocked because I had found out I have a serious condition — not because I’m Black and have MS. After all, we “had it in the family,” as my dad would say.
While nobody’s ever said it to me directly, I learned soon enough that “I didn’t know Black people got that” comments floated around about MS pretty regularly.
My friend, who also has MS and is white, chuckled to me that someone said it to her, and she replied: “The only people I know with MS are Black.” Still, it was a common belief that MS only affects white people.
Let’s correct that right now: This is not true.
It’s a long-held misconception that Black people don’t get MS, though many Black people also think of it as a “white person’s disease.” While MS is most common in Caucasians of Northern European descent, it occurs in most ethnic groups.
A 2013 study finally settled this issue by showing not only that Black people get MS, but also that among women, Black women have a higher risk than white women. Since then, studies have consistently confirmed these results.
While diagnosing MS can be tricky for any patient since early symptoms may suggest several possible conditions, Black people may face an additional hurdle.
Although studies have proven that Black people do get MS, Black patients may encounter challenges when dealing with physicians who still believe that MS is uncommon in Black people.
This can result in misdiagnosis, inappropriate treatment, and delay while doctors test for conditions more commonly considered “Black diseases” such as lupus, sickle cell, and stroke.
If you’re very symptomatic at the time of diagnosis, though, it’s a different ballgame and doctors may consider MS as a potential diagnosis more readily.
In addition to Black people with MS having symptoms that differ from white people with MS, and being more likely to have rapid and disabling disease, they’re also more likely to develop lesions on the optic nerve and spinal cord.
I had exactly those flare-ups on my optic nerve and spinal cord, which is how I was first diagnosed with MS.
I can tell you from personal experience that if you’re having both optic neuritis and difficulty walking at the same time, bells will go off in your doctor’s head to send you straight to a neurologist specializing in MS.
There’s no cure for MS, so the goal of treatment is to slow disease progression and manage symptoms.
Less effective? Why such a difference in the treatment responses?
Many say that the difference in treatment response may be related to the low participation of Black people in clinical trials for MS drugs. This leads to limited data.
There are still some small studies that suggest treatments aren’t as effective for Black people as for whites. The reason isn’t yet clear.
Black and marginalized populations are severely underrepresented in scientific research and clinical trials in the United States, including MS drug studies.
You see the same tiny inclusion numbers for clinical trials, where Blacks have been largely left out of trials for MS treatments, making up only 5 percent of clinical trial participants while they represent 13.4 percent of the U.S. population.
Meanwhile, 83 percent of trial participants are white, despite white people representing 67 percent of the U.S. population.
That’s way out of proportion for something that’s not a “white people’s disease.”
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Right now, we’re not meeting that standard. It’s time to change that.
Without the participation of all of these populations, you can’t accurately assess the safety and effectiveness of a potential treatment across different ethnicities.
It’s time to stop ignoring and start including.
It’s time to acknowledge the disparities and increase participation.
It’s time to engage researchers and communities to end underrepresentation.
I look forward to the day when I’m not comparing side effects to choose which drug’s less likely to kill me, and am instead choosing between options that have already been proven safe and effective for me as a Black MS patient.
Here’s to discovering which drugs work best for all of us living with MS.
The founder of ciGODDESS, Lisa Cohen helps high-performing women with chronic illness to thrive with confidence and beauty in their lives and careers as leaders. Known for her Rockstar Women With MS initiative, work with Makeover Your MS, volunteering in the MS community, and her Amazon bestseller “Overcome the BS of MS,” Lisa is a sur-thriver of MS and has been featured in YAHOO! Lifestyle and Brain & Life magazine. Follow her @cigoddessgram.