Obstacles to access
Despite barriers, people of color with MS are speaking up for themselves and their communities.
by Elaine Shelly
People of color living with multiple sclerosis (MS) face challenges beyond differences in symptoms, diagnosis and treatment. They also confront issues with lack of access to healthcare and participation in research projects, as well as language and cultural differences. But many people of color are advocating for themselves and their communities to improve their care.
Mayteé Ramos advocates for people with MS who don’t speak English. Clarissa Hernandez-Hidalgo offers a unique perspective on the privileges that come with perceptions — and misperceptions — about a person’s skin color. Veronica Daniels-Lewis focuses on healthcare professionals who make mistaken assumptions about their patients of color.
And Dr. Jacqueline Rosenthal, MD, a neurologist at the Shepherd Center in Atlanta, argues that most current research lacks focus on the possible causes of health disparities, such as which parts are due to societal inequities and which factors are due to biological differences.
“It’s important to acknowledge that it’s not just access to care and may be some disease factors,” Rosenthal says. “We can’t compare groups of people without acknowledging that.”
Rosenthal sees these disparities reflected in her patients. She says her Black patients with MS generally have more disability over time and have worse MRI findings, with more brain atrophy than her white patients. Hispanic patients also have more disability and transverse myelitis, or inflammation of the spinal cord — which can correlate with more disability — than her white patients.
“The most distressing suggestion is differences in how one responds to treatment,” Rosenthal says of a possible reason for MS racial disparities. “How much is this a complicating factor?”
Rosenthal points to research that indicates African Americans don’t do as well on interferons, the earliest MS disease-modifying therapies (DMT), as do other people in clinical trials for the medications. She acknowledges other issues, such as insurance complications or delayed diagnoses, that might play a role in poorer outcomes for people of color with MS. “By the time they get in to see me, there’s likely to have been a delay,” she says. “That could result in severe MS symptoms by the time individuals are diagnosed.”
A delayed diagnosis for people of color with MS
Daniels-Lewis’ story illustrates the delays in diagnosis that people of color can experience. Daniels-Lewis, who is Black, experienced her first symptoms in 1988. She repeatedly sought medical help, but her symptoms were dismissed and minimized. She wasn’t diagnosed until 1996. She currently sees an MS specialist who also is Black, and she emphasizes that makes a difference in her treatment.
Daniels-Lewis recalls a time when she was experiencing symptoms she feared pointed to an MS exacerbation. Her regular neurologist was unavailable, so she had to see another neurologist.
“I had tingling in my feet, and my balance was off,” Daniels-Lewis recalls. “I didn’t feel he was taking my concerns seriously. He was mostly dismissive. It was so uncomfortable.”
Mental health issues
Delays in diagnosis and treatment as well as misperceptions about symptoms and their causes can affect a person’s mental health as well. Katrina Marsh, a counselor with offices in San Francisco and Oakland, California, has seen this among her patients with chronic illnesses, many of whom are people of color and LGBTQIA+. She’s seen her patients struggle with finding adequate healthcare and come to her feeling dismissed, judged and worthless. Marsh works with them to make plans to get the healthcare resources they need and advocate for themselves.
“There’s sadness, physical and emotional pain, and sometimes heartbreak and despair,” Marsh says, but she tells them, “You are worthy of receiving great care. Accept nothing less.”
Ramos, who worked as a medical interpreter before her MS diagnosis, also sees how delays in diagnosis and treatment can occur for people who aren’t fluent in English. Some Spanish speakers spend precious time looking unsuccessfully for a nearby Spanish-speaking healthcare provider or MS specialist.
“They go through a lot,” Ramos says. “At a big hospital, someone with a low income can apply for a low-income charity program and see a doctor, but they might have to wait three months or more for an appointment.”
Ramos’ professional experience allowed her to see firsthand the difficulties Spanish-speaking people encounter when trying to obtain medical care in primarily English-speaking settings.
“If the doctor’s office doesn’t offer interpreter service, you cannot ask questions,” Ramos says. “If you don’t understand the instructions, things can go wrong.”
Ramos’ path to diagnosis was quick. In December 2015, she suddenly had trouble writing, and she developed lower back pain and difficulty controlling her right leg. She was diagnosed with MS within a week. Because of her symptoms, she had to quit her job. Ramos leads two MS support groups, one in English and one in Spanish.
Advocating for family and friends
Hernandez-Hidalgo of Merced, California, also was diagnosed quickly. A multi-racial yoga instructor and the mother of two girls, she remembers the exact date she first heard a neurologist tell her that she had MS: Dec. 24, 2010. At the time, she was a 19-year-old psychology major at the University of California at Merced. After experiencing vision problems, she had an MRI and was diagnosed with MS the same day.
“It was a fast diagnosis,” she says. “I know people who go months and years, so I’m grateful.”
Hernandez-Hidalgo has blonde hair and white-appearing skin. She says her appearance affords her privilege that she can use to advocate for her relatives and for other people with MS who don’t have the same privilege. She points to her grandmother, who lives in an assisted living center. Hernandez-Hidalgo says she has gone to the center to help her grandmother with basic care, things she argues the staff members should do as a matter of course.
Rosenthal points out that many of her patients of color carry their experiences of medical bias with them, making any visit to a healthcare professional stressful. “They are wondering, ‘Am I being judged?’” she says. “Sometimes, you have to address that and look for ways to make your patients feel comfortable.”
Rosenthal believes that things may also begin to improve for people of color with MS when healthcare providers question the personal attitudes and assumptions that lead them to treat some patients differently. “A lot of doctors are oblivious to their own bias,” Rosenthal says. “You have to acknowledge first that it may be there.”
Diverse research participants
Abbey Hughes, PhD, a rehabilitation psychologist at Johns opkins University School of Medicine, Department of Physical Medicine and Rehabilitation, is learning how to make research projects more inclusive and accessible and eliminate barriers to participation for people of color with MS. She points to her psychology colleague, Jagriti “Jackie” Bhattarai, PhD, whose research focuses on reducing racial disparities in MS care. One of their projects saw a higher level of minority participation by Black, Indigenous and other people of color when the pandemic forced the project to go online instead of requiring participants to drive to Johns Hopkins for weekly appointments.
Hughes and her colleagues direct a postdoctoral fellowship that will engage fellows in projects focused on addressing psychosocial wellness in people with MS, especially communities of color. There is a need for more researchers to include people of color and for more projects, like Bhattarai’s, that seek to decrease disparities in disease outcomes, Hughes says.