It’s well established that racial disparities in health care exist across the board in the U.S.—and migraine treatment is no exception. Reminder: Migraine isn’t just a run-of-the-mill headache. It’s a neurological condition that can cause a number of symptoms, from throbbing head pain to nausea, dizziness, and sensitivity to light, sounds, and smells. Migraine affects about 12% of people in the U.S., and research shows it’s the second leading cause of disability globally.
Yet despite its health burden, migraine is a very underserved field with huge racial disparities in diagnosis and treatment, says Jessica Kiarashi, MD, assistant professor of neurology at the University of Texas Southwestern Medical Center and chair of the American Headache Society’s Underserved Populations in Headache Medicine Special Interest Section. “If you look at the racial breakdown, Black and Latinx patients are less likely than white patients to receive a diagnosis of migraine, which means they’re also less likely to be prescribed the appropriate treatments,” she explains.
Dr. Kiarashi and 15 other migraine specialists coauthored a paper published in the journal Neurology that looked at previous literature to analyze these disparities. They found that even though white, Black, and Latinx people experience migraine at roughly the same rate—about 15%—Black and Latinx people are less likely (25% and 50% respectively) than white people to receive a migraine diagnosis.
And when Black people go to the E.R. for head pain, they are nearly five times less likely than white people with the same complaint to receive proper treatment, Dr. Kiarashi's research found. That’s been the exact experience of Grace Chappell, 41, of Philadelphia, who has chronic and hemiplegic migraine (in which you experience weakness along one side of your body, in addition to head pain). “Sometimes when I go to the E.R., I’m treated like I’m nobody, like I don’t exist at all,” says Chappell, who is Black. “Several negative incidents have made me feel like I never want to go back.”
When it comes to the diagnosis and treatment of migraine in Asian and Indigenous people, there’s limited data. “These groups and others are underrepresented in research, which is a big problem, especially since Indigenous people in this country—including Alaska natives—have the highest prevalence of migraine and severe headache at about 19%,” Dr. Kiarashi says.
Racial discrimination and underrepresentation in research are just a couple of the reasons there’s a racial gap in the diagnosis and treatment of migraine. Here are some others—plus what’s being done to close the gap.
Why do people of color often receive worse migraine care?
Anyone who lives with migraine knows that getting diagnosed and treated can be an uphill battle. And if you’re part of a marginalized group, it can be even more difficult. Here’s why:
Systemic racism and implicit bias
Systemic racism (the laws, policies, and structures that advantage white people and disadvantage people of color) has negatively impacted the health outcomes of communities of color for centuries. On a personal level, implicit (or unconscious) bias from health care providers can also play a role. These biases are thoughts and feelings you’re unaware of that influence your perception of a person or group. Often, in a health care setting, these biases can lead to a negative view of a person based on their race, gender, or other aspects of identity, research shows.
Chappell says she’s experienced implicit bias firsthand: “One time, I was trying to explain that I couldn’t take a certain medication because I’m allergic to it, and the E.R. doctors called security, saying I was angry and belligerent,” she recalls. “Just because I speak with my hands and I’m emotional, that doesn’t mean I’m being disrespectful or I’m a threat.”
According to a 2019 study, more than one third of Black people experience discrimination in health care settings, and 22% avoid going to the doctor due to the discrimination they anticipate experiencing. To combat negative stereotypes and receive proper care, many people of color feel they have to look a certain way. “A friend of mine wears business casual and does her hair, even though she feels like crap,” says Courtney White, MD, a neurologist and clinical assistant professor at Thomas Jefferson University Hospital in Philadelphia. “She said when she goes in wearing sweatpants, she isn’t taken as seriously. That’s the game us people of color have to play.”
Lack of access to migraine care
Socioeconomic status, insurance status, and geography can all present obstacles when it comes to getting migraine care. In general, people who have lower incomes tend to experience worse health outcomes than those who have higher incomes. What’s more, migraine prevalence is strongly associated with annual household income as well. People with low incomes (less than $10,000) have a 60% higher rate of migraine than people with higher incomes (more than $30,000), according to an older study published in JAMA. “So if you are a person of color from a lower socioeconomic status, you have twice the risk of health disparities,” Dr. Kiarashi says.
Insurance can also be an issue. Research shows that people who are uninsured and those with government-assisted insurance receive substandard migraine treatment. Chappell has noticed this when she goes to the doctor: “Being on government-assisted insurance, a lot of times they treat me like I’m beneath them, like I don’t even deserve to be treated,” she says. Another problem she experiences is not being able to get the medications she needs. “Sometimes insurance won’t pay for what the doctor prescribes so I have to settle for something close to it,” she explains.
Where you live may also be an obstacle to migraine care. There are only 706 certified headache specialists in the country, and many states have two or fewer headache specialists. “Urban centers have more headache specialists than more rural areas,” Dr. Kiarashi says. “And most headache specialists who train at fellowship programs, which are located in urban settings, tend to stay where they train afterward.” Even if you live in an urban area, it may be difficult to see a headache specialist if you rely on public transportation that doesn’t get you to their offices.
Lack of representation
“Migraine has been framed as a middle-aged white woman’s disease but we know that it’s not,” Dr. White says. “There are many people of color who are not diagnosed. They’re walking around with debilitating symptoms and being gaslit by doctors and the community, in general, who say, ‘You’re fine. Migraine isn’t something you get,’ which isn’t true.”
This stereotype could be part of the reason why marginalized groups are underrepresented in migraine studies. When Dr. Kiarashi and her colleagues analyzed papers published in Neurology over the course of 2019, they found that more than 75% of participants were white. They noted: “This bias is not due to underlying rates of migraine, but due to the failure of recruitment efforts to obtain representative samples.” Underrepresentation not only invalidates the experiences of people of color but also makes it more difficult for specialists to provide the care they need. “How can we be sure our treatments help everybody if we don’t have good representation in research studies?” Dr. Kiarashi notes.
There’s also a lack of diversity amongst doctors and researchers designing and conducting studies. For example, when Chappell needs to go to the E.R., she tends to see lots of Black patients, “but there are no Black doctors who can relate or try to help,” she says. That’s a problem, since doctors of color may be better able to help patients of color: One study found that Black men respond better when paired with a Black doctor (versus a non-Black doctor), which led to improved health outcomes.
Distrust of the medical community
Black people report more migraine days each month and higher pain intensity than white people—yet they are less likely to seek treatment, according to Dr. Kiarashi's study. “Black patients may have distrust of the medical community due to historical atrocities like the Tuskegee syphilis study and the experimentation done on Black women for ob-gyn studies,” Dr. Kiarashi says.
This long history of abuse still plays out today, Dr. White says and notes that as recently as 2017 a textbook taught nurses stereotypes about how different racial groups experience pain. “It’s still very much in the medical culture,” she says.
How can greater equity in migraine care be achieved?
The first step is acknowledging that racial disparities in migraine care exist, Dr. White says, noting that medical institutions and organizations like the American Headache Society (AHS) are finally doing so. Dr. Kiarashi, who is head of the AHS’s Underserved Populations in Headache Medicine Division, notes that change must come from the top. “Currently, people at the highest ranks in migraine medicine are white men,” she says. “Increasing the diversity of our leadership is important because that will help us better serve our patients and recruit more people of color to headache medicine.” In order to retain doctors from marginalized groups, however, those in migraine medicine must recognize their implicit biases and create an environment of cultural sensitivity, she adds.
It’s also crucial for researchers to recruit study participants from underserved groups, which will require gaining the trust of these communities. In their paper, Dr. Kiarashi and her colleagues note that more funding from the National Institutes of Health (NIH) is needed to reach these groups. “Funding for headache research has been driven largely by the pharmaceutical industry,” they write. While this funding has led to great breakthroughs in headache treatments, many of these drugs are too expensive for people who have no insurance or government-assisted insurance, further increasing inequities. Funding from the NIH (which is allocated by Congress) would improve the ability of researchers to reach marginalized groups.
Finally, Dr. Kiarashi stresses the need for primary care physicians to receive more thorough education about migraine in medical school. “They are often the ones who see patients first so they need to know how to recognize migraine and send people to a specialist if needed,” she says. For Chappell, it took seven years for her primary care doctor to finally give her a referral to a headache specialist. “I told them I was getting these frequent headaches, and they didn’t know what they were,” she says. “They just kept telling me to watch what I eat and lose weight.”
In 2015, her doctor finally referred her to a neurologist, who diagnosed her with chronic and hemiplegic migraine. The diagnosis has been a game changer since it’s allowed her to finally get the treatment she needs. “In the Black community, we’re often labeled as having a high pain tolerance so doctors will say: ‘Oh, it’s just a headache, you’ll be fine,’” Chappell says. “But that’s not true, and I just want them to understand. That’s it. I want to be understood just like everyone else.”
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