When Lauren Morton, a nonprofit executive, lost her job in 2020 during the COVID-19 pandemic, her first thought wasn’t how she would cover her rent or pay for groceries. It was how she would pay for her medication. Diagnosed with relapsing-remitting multiple sclerosis (MS) 20 years ago, Morton takes fingolimod (Gilenya) to prevent relapses and nerve damage. “I’d been getting health insurance through my job. I had to navigate a whole new world,” she says.
That new world involved finding an insurer that would cover her treatment—and filling out forms to get the required authorizations for her medication. Morton also struggled to cover the cost of insurance and hefty co-pays for neurologist visits. “It was so unaffordable that I started stretching out doses of my medication,” says the 41-year-old Atlanta resident. “Instead of taking one pill a day, I’d take a pill every two or three days. Then I’d pray that I wouldn’t have a relapse because I couldn’t afford to visit the doctor.”
The pandemic has illuminated inequities in society as well as in the health care system, including access to treatment for disorders like MS. Those disparities can dramatically affect the level of care patients receive and the course their disease takes.
And the expense isn’t limited to the medication. Diagnosis and management often require lab tests, repeat MRI scans, and lumbar punctures. Patients may need to navigate bureaucratic barriers to get preauthorizations for these as well.
Those expenses and that bureaucracy cause stress—and economic hardship. A 2019 online survey of 478 people with MS conducted by the National Multiple Sclerosis Society (NMSS) found that 40 percent experienced stress related to the cost of medication, and 40 percent had altered or delayed the use of their medication, skipping doses because of money worries. More than half said they were concerned about being able to afford their medications in the future.
Alicia James, 48, a human resources professional in Detroit who was diagnosed with MS in 2018, recalls a conversation she had with her insurance company when she lost her job soon after her diagnosis and ended up on Medicaid. “The insurance employee asked, ‘Do you still have MS? Do you still need the medication?’ I told her I’ll always have it, and she said, ‘Are you sure?’”
Ultimately, James was so worried about the cost of her medication that she accepted a job with a substantial pay cut just to get health insurance. “I realized there was no way I could pay for the medication otherwise.”
Other Obstacles
Not being able to afford medication is just one of the obstacles to quality care. Others include whether patients have insurance and what type; where they live; their income, sex, race, age, and cultural beliefs; and whether they trust physicians.
“We are just starting to look at how these factors affect patients,” says Lilyana Amezcua, MD, MS, FAAN, associate professor of neurology at USC’s Keck School of Medicine.
And given that treatment for MS modifies but does not cure the disease, “it’s imperative that we treat people aggressively and early with the right medication, but that doesn’t always happen,” says Katherine DeStefano, MD, assistant professor of neurology and medical director of the Multiple Sclerosis/Interventional Immunology Center at the Yale School of Medicine in North Haven, CT.
That can be the case even if patients have insurance. “When you look at drug formularies of public hospitals, for instance, you see that patients without private insurance don’t necessarily get access to the latest drugs, even if those drugs are FDA approved,” says Dr. Amezcua. “So as doctors, we need to think about the drugs we do have that could serve our patient populations.”
Where patients live also can affect the quality of care they receive. “I believe patients should be treated by MS specialists, preferably at MS centers,” says Dr. DeStefano. Typically, these centers offer comprehensive care from MS specialists and other providers trained to fulfill the specific needs of their patients. But not every city—or even state—has an MS center. Arkansas, for example, has none. A big state like Texas has only four, while New York has 20. When Morton moved from Atlanta to El Paso, TX, for a job, she couldn’t find a local MS center or specialist. She ended up finding one in Dallas, a nine-hour drive or an hour-and-a-half flight away.
Being seen by a specialist can make a big difference, according to a 2019 study at Duke University. Of nearly 5,000 patients studied, those being treated by general neurologists were more likely to be prescribed older, less effective drugs than those being treated by specialists.
Telehealth might connect more patients with specialists, but state licensing restrictions often prevent doctors in one state from treating patients in another, even via videoconference. Many states relaxed licensing restrictions because of COVID-19, but those restrictions may be reinstated when the pandemic ends. Additionally, not all patients have a computer or an internet connection, notes Stephen Krieger, MD, FAAN, professor of neurology at the Corinne Goldsmith Dickinson Center for MS and the Icahn School of Medicine at Mount Sinai in New York City.
Less obvious barriers include lack of access to transportation. If patients don’t have cars, they can’t drive to a lab for a blood test or an MRI. Some patients can’t pay for prescriptions or take time off for follow-up appointments. “Too many doctors presume that patients have the resources, time, and child care to get blood work, go for a spinal tap, collect the results, or whatever the doctor orders,” says Dr. Krieger. “But someone who is working three jobs or doesn’t get to take time off for doctor visits might not be able to do these things. Even if my plan and diagnostic thinking are correct, what I’m asking some patients to do may be useless to them. Doctors and patients need to collaborate to find the best way to navigate these barriers.”
“Doing telehealth visits gave me a window into my patients’ lives,” says Mitzi Williams, MD, medical director of the Joi Life Wellness Group in Atlanta. “We don’t typically discuss these things in the clinic, but if I’m recommending that patients walk for 20 minutes a day, and they live in an unsafe neighborhood, or the pavement is uneven, they may not be able to follow my instructions. As a health-disparity researcher, I’ve gained a lot of perspective on what patients are dealing with.”
Cultural beliefs also can impede diagnosis or treatment. “A belief in fatalism, for example,” says Dr. Amezcua. “People may think, ‘Why should I take a disease-modifying medication if the disease is my fate?’ Or they may believe the condition is their cross to bear.”
Dr. Krieger recalls a patient from the Caribbean who refused medication for the first few years after her diagnosis. “She told me, ‘God will provide.’ I tried to stay open-minded and keep the conversation going so she would keep coming back,” he says. After she had kids, she agreed to take a disease-modifying drug to make sure she would be there for them. “It’s important for doctors to maintain a partnership with their patients, even if they have different beliefs,” he says.
Preconceptions Can Limit Care
Physician bias, which can lead to assumptions about who is likely to get MS, also can affect care.
“There was a disconnect between what I learned in medical school about who gets MS—specifically young White women of Northern European descent—and what I was seeing in my practice, which was a waiting room with 50 to 60 percent Black patients,” says Dr. Williams. “By the time they get to me, a lot of my patients of color are doing poorly; they’re having difficulty walking or are experiencing another significant disability before they seek care or their doctors say, ‘Let’s see if a specialist can do anything for you,’” she says.
Misdiagnosis is also common, often because of these same assumptions, says Lauren Gluck, MD, director of the Multiple Sclerosis Center at Montefiore Medical Center in the Bronx, NY.
Morton can attest to that. When she first began experiencing numbness in her foot while at college at Emory University, she had difficulty getting a diagnosis and treatment—even after a brain scan showed lesions that were indicative of MS. “I landed in the emergency department after tumbling down a set of stairs when my legs locked,” she says. “When they gave me an MRI, the lesions were obvious. But the general neurologist I saw after that looked at my MRI and said, ‘There’s no way you have MS.’”
Another neurologist was equally skeptical: “He said he wouldn’t give me a diagnosis or medication until I had a ‘disabling incident.’” By that point, Morton needed a cane to get around the campus. “Because I was a young Black woman, they didn’t think I fit the typical MS profile.”
James had a similar experience. Her first symptom, in 2016, was a burning sensation down her thigh, which her primary care doctor assumed was arthritis. A CT scan led to a diagnosis of cervical arthritis and a prescription for a muscle relaxant. “I did some physical therapy and started feeling better,” she says. Then in spring 2018 she developed other mysterious symptoms and eventually got an MRI and a diagnosis of relapsing-remitting MS. “I had tears in my eyes,” says James. “I was so happy to finally know what was going on.”
Doctors also may miss MS in men. “A male patient might go to see his doctor for urinary problems [a common symptom in MS] and be referred to a urologist,” says Dr. DeStefano. “Both the bias that men don’t get MS and the intermittent symptoms of the disease can lead to it being overlooked.” That can be catastrophic for men, who don’t develop MS as frequently as women (about two-thirds of people with MS are women) but whose cases tend to progress more rapidly.
Proactive Measures
Patient organizations are trying to address these inequities. The NMSS, for one, is pushing to recruit more diverse providers. “People of color with MS want to see doctors who look like them and understand them,” says Bari Talente, the society’s executive vice president of advocacy and health care access. The NMSS also offers cultural competence training—teaching doctors to be aware of, understand, and appreciate other cultures and belief systems—to help broaden perspectives on who gets MS. “In the fellowships we fund, that’s now part of the core training,” says Talente.
Patients’ lack of knowledge can lead to gaps in treatment as well. “The first question I ask patients is, ‘Do you know what MS is? Can you explain it to me?’” says Dr. Williams. “It’s astounding to me how many people can’t. But it’s important to explain to patients that MS, like hypertension, can cause damage even when people are feeling well, which is why it’s important to stay on therapy.”
Cultivating trust is key, says Dr. Gluck. “If my patients can’t trust me, they have no reason to listen to me.” A trusting relationship can lead to better health literacy as well. “Many of my Black and Hispanic patients haven’t heard of people in their community getting MS. Some say ‘Only White people get it,’” Dr. Gluck says.
Diversifying Clinical Trials
Less than 10 percent of participants in clinical trials are from underserved groups, says Dr. Amezcua. “Before 2014, only 1 percent of the total literature on MS represented Black and Latino patients. Yet within that 1 percent, the numbers suggest a worse prognosis and faster rates of progression.”
Lack of trust is one contributing factor, says Dr. Williams. “When people aren’t believed by their doctors, that exacerbates mistrust,” she says.
In a 2021 survey of 2,599 patients with MS published in the International Journal of MS Care, Black and Hispanic subjects expressed more concern about being exploited by research teams and not receiving quality care; some Hispanic individuals also expressed concerns about participating because of their immigration status. Despite the mistrust, many people of color want to be involved in trials, Dr. Williams says. “They often don’t know where to find the information, or their doctors may not ask if they want to participate.”
Other reasons for low enrollment are connected to systemic injustices. For example, many clinical trials don’t accept people with co-occurring conditions like heart disease or diabetes, and since a disproportionate number of people of color have these conditions—due to inequities in housing, education, wealth, employment, and access to health care—they are more likely to be excluded.
A lack of Black and Hispanic researchers also is a problem. “We need to invest in minority health care providers and researchers, who will be better able to connect with a more diverse pool of volunteers,” says Dr. Amezcua.
Yet there are signs of hope. The National Institute of Neurological Disorders and Stroke (NINDS) is funding research focused on the problem. “[The NINDS] is at the forefront now, developing research, guidelines, and agendas that focus on disparities,” says Dr. Williams.
Spreading Knowledge
Dr. Williams and Dr. Amezcua are passionate about educating vulnerable communities about MS. Every month, Dr. Amezcua, in conjunction with the Multiple Sclerosis Association of America’s MS Minority Research Engagement Partnership Network, meets with different pharmaceutical executives, clinicians, and patients to better understand how to engage people of color who have MS. “It used to be that I would sit in meetings and say, ‘Let’s talk about minorities in MS,’ and no one was interested,” she says. “Now the needle is finally moving.”
Medical students and doctors need to be taught that MS is not just a disease of young White women. “We doctors need to be aware of our own unconscious biases and mindful of the historical factors that have led us to where we are,” says Dr. Williams.
“In the next few years, we’re really investing in educating general neurologists,” says Talente of the NMSS. “We want people to see an MS specialist, but if they can’t, we want all neurologists to know the best ways to treat the condition.” The NMSS is doing that through Project ECHO, a distance-learning program that connects MS specialists with general neurologists who treat MS among other conditions. Through its MS Navigator program, the society connects patients with local MS specialists. It also can assist with insurance claims and financial-aid programs from pharmaceutical companies.
Although it took her a long time to get there, Alicia James is happy with her care. Her advice to other people, especially people of color, who suspect they have MS: “Don’t take no for an answer. Listen to your body, and if you are not satisfied with the care you’re getting, go to another doctor.”
Other than occasional bouts of fatigue, Lauren Morton is in a good place too. Yet she still encounters Black women with MS who have “been bounced around like a pinball,” misdiagnosed, or had their symptoms ignored. “It breaks my heart, because it doesn’t have to be this way.”
Change may happen slowly, but it is happening, says Dr. Williams, who is heartened by what she’s seeing. “I’ve been working in this area for more than 10 years, and right now interest in disparities in MS has exploded,” she says. “There’s more funding for research, more courses on cultural competency for physicians, and more support from the National Institutes of Health at the clinical trial level. Things are getting done.”
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