MS Reclamation

Multiple Sclerosis Within the Black Community

Per the Mayo Clinic, IN PRESENT DAY 2020, “Risk Factors” for MS include:

White people, particularly those of Northern European descent, are at highest risk of developing MS. People of Asian, African or Native American descent have the lowest risk.

THIS IS FALSE. I’ll be civil for the sake of providing useful information and spreading awareness, but this is horrifying.

In an article “Multiple Sclerosis More Common In Black Women Than White” on Medical News Today:

“Of these new cases, black patients had a 47% greater likelihood of MS compared to white patients. Results also showed that Hispanics had a 50% reduced risk compared to white patients, and Asians had a 80% lower chance than whites.”

We’ve known this for years. You know,  hearkening back to when we thought this disease was “rare” (hi, if you’re new here: it’s not), and affected approximately 400,000 people in the US, only 2 million worldwide.  (More like a million give or take, domestically.)

The 2013 study referenced, “Multiple Sclerosis in US Minority Populations“, was published at the US National Library of Medicine National Institutes of Health. A press release was at the American Academy of Neurology, titled “MS May Not Be as Rare as Thought in African-Americans“, referencing this study.

Why in 2020, years later, are these data not reflected? The worst part is I can only really ephemerally touch on a subject that involves an obscene tradition of what equates medical malpractice and neglect encompassing an entire community, hundreds of years of institutionally sanctioned misinformation, the perpetuation of horrific stereotypes at best, racism at worst.

In a study found on Neurology,  “Longitudinal assessment of rates of brain and retinal atrophy in African American versus Caucasian American patients with Multiple Sclerosis (S47.003)” where African Americans with MS is AAMS and  Caucasian Americans with MS is CAMS:

“AAMS exhibits more rapid neurodegeneration with accelerated brain and retinal neuro-axonal loss than CAMS. These results corroborate the more rapid clinical progression observed in AAMS vs CAMS, raising the possibility that AAMS may benefit from a more aggressive therapeutic approach.”

It’s not a surprise, these issue’s aren’t isolated to Multiple Sclerosis. Per an article at the Association of American Medical Colleges, “How we fail black patients“:

“Half of white medical trainees believe such myths as black people have thicker skin or less sensitive nerve endings than white people. An expert looks at how false notions and hidden biases fuel inadequate treatment of minorities’ pain.”

From the Proceedings of the National Academy of Sciences of the United States of America, “Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites

“It demonstrates that beliefs about biological differences between blacks and whites—beliefs dating back to slavery—are associated with the perception that black people feel less pain than do white people and with inadequate treatment recommendations for black patients’ pain.”

While one can look at these data and conclude that these are all fairly recent studies, the research is getting better, doctors are learning, there’s progress: There is substantive evidence indicating that while perhaps this isn’t an entirely invalid sentiment, allow me to present the 1985 Heckler Report, also known as “Report of the Secretary’s Task Force on Black & Minority Health“.

This isn’t a study.  It’s not concise.  This is a literal multi-entry epic that looks like this:

This is considered “The landmark U.S. Report”. There were other publications prior, and since, but this was a massive scale undertaking.

Per an article over at Penn  LDI, “Struggling to Escape Poor Health: 120 Years of Health Disparities Reports“:

“More than 290 scientists, technicians and staffers from across federal government health agencies and dozens of universities compiled data on minority populations’ health and healthcare. The Task Force commissioned 40 studies conducted by 54 academic scientists. When published in 1985, the Report of the Secretary’s Task Force on Black & Minority Health’s nine volumes took up as much shelf space as a set of old-fashioned phone books. The executive summary alone ran for 239 pages.

In her opening letter, Heckler said the report documented “a sad and significant fact: there was a continuing disparity in the burden of death and illness experienced by blacks and other minority Americans as compared with our nation’s population as a whole.”

Though she was basically fired at the time, her work went on to be considered a massive achievement that helped foster awareness and build momentum… until it didn’t.

This all speaks to a lot of issues within our medical system, it’s antiquated, texts outdated, good ol’boy-isms, whatever. Care should include continuing education, sure setting a bone, and wrapping it in plaster the old way might work just as well as it ever has,   but a 3d printed medical cast can help bones heal 40-80% faster.  We need growth in a lot of areas, and that will take time. Most of that can take time. People can’t, we don’t get much of it.

The human body isn’t a thing.   Black people haven’t abruptly changed in the last 120 years, they’ve been mistreated and ignored.  Their symptoms have been dismissed, their women continue to die at insane rates  from pregnancy complicationsThis is preventable.  35 years from the last “landmark” effort to fix this is too long.

As a pwMS I can’t imagine how challenging this disease would be if I weren’t Caucasian. It took me more than six years before I felt heard, and even then I struggled to find the right care. My heart goes out to anyone suffering from these injuries. I hope some of this information can help bring awareness to this information, or at least act as a starting point for further research for anyone who might need it.

To the medical institutions: Do better.

There are ways to help. Discussing these issues is just one. Finding causes and reaching out, donating, or even just sharing to spread the word. I think the biggest disservice right now is to avoid these conversations or dismiss it thinking it’s better because small strides are being made.

One non-profit setting out to “help protect and advance the health and wellness of Black women and girls” is the  Black Women’s Health Imperative. They advocate for healthcare policy, promote medical engagement and healthy lifestyles, community outreach, education.

Some other resources/articles that might be of use:

African Americans at the National Multiple Sclerosis Society
MS among African Americans at Above MS
The Need for Patient Advocacy When You’re Black in the Doctor’s Office at Vice
African Americans and Multiple Sclerosis (Health Disparities) by Dr. Brandon Beaber (Video)