By Emily Lemiska
Imagine you arrive at the emergency room for stabbing head pain. You think it could be a migraine attack, but you aren’t sure. The pain is worse than it’s ever been before; you can hardly see, and your face feels numb. Is it a stroke?
Now imagine that you are Black. Because of that, according to a 2021 study from the American Journal of Roentgenology [Radiology], your doctor is 32% less likely to order advanced imaging of your head, like a CT or MRI scan. The doctor is also less likely to prescribe you pain medications. A 2012 metanalysis of 20 years of studies across inpatient, outpatient, and emergency room settings found that Black or African American patients were 22% less likely to receive pain medication than white patients.
Research continually demonstrates that compared to white people, Black, Indigenous, and People of Color (BIPOC) face significant and broad disparities in the health care they receive and can access. Migraine and headache care is no different.
“Disparities in migraine and headache care exist at every level, from seeking care to diagnosis to treatment,” says Nim Lalvani, Executive Director of the American Migraine Foundation. “We have a lot of work to do when it comes to representation, access, and challenging the barriers.“
The growing body of research on migraine-specific disparities
According to a 2015 analysis of the National Health Interview Survey, the prevalence of severe headache or migraine is fairly similar across races and ethnicities: 17.7% for Native Americans, 15.5% for whites, 14.5% for Hispanics, 14.45% for Blacks, and 9.2% for Asians.
But the data varies by exact diagnosis. An American Migraine Prevalence and Prevention study showed that among those with chronic migraine, prevalence was highest in Hispanic women (2.26% compared to 1.2% for white women).
Despite data indicating that headache and migraine disorders affect minority groups fairly equally—if not more often—there are disturbing differences in diagnosis and treatment across race and ethnicity.
For example, some research suggests Black Americans are less likely to be diagnosed with and meet the full criteria for migraine; instead, they are more likely to be diagnosed with “probable migraine.”
Health care utilization is another area where discrepancies appear. Data from the National Hospital Ambulatory Medical Care Survey and National Ambulatory Medical Care Survey show that whites made up 176.3 of annual ambulatory care visits per 10,000 individuals at which they received a diagnosis of migraine, while Blacks accounted for 133.2 visits and Hispanics made up only 89.5.
Studies repeatedly point to enormous disparities across all aspects of migraine care. A 2006 study of 313 patients found that African Americans were less likely than whites to utilize health care for migraine treatment (46% vs. 72%), to be given a headache diagnosis (47% vs. 70%), and to be prescribed acute migraine medication (14% vs. 37%). African Americans also reported less trust in the medical community and less positive communication with their provider.
According to another analysis of multiple studies in 2015, African Americans living with headache disorders also were more likely to be diagnosed with comorbid depressive disorders; to report headaches that are more frequent and severe, to have their headaches underdiagnosed or undertreated; and to discontinue treatment early.
Untangling the reasons behind unequal care
The health care system is supposed to help, not hurt. So how—and why—does unequal care happen?
One likely cause is unconscious bias, which, according to Sheila Thorne, president and CEO of the Multicultural Healthcare Marketing Group, LLC, is defined as “ingrained habits of thought that lead to errors in how we perceive, reason, remember and make decisions.”
“Unconscious bias, also known as implicit bias, happens outside our conscious awareness,” Thorne explains. “It is learned, automatic, mostly unintentional, and is systematically ingrained that we may not be aware that we’re committing it. There is increasing evidence that unconscious bias, a form of discrimination and stereotyping, leads to false assumptions and negative outcomes for people of color in health care settings. This contributes to health disparities, where certain groups, usually people of color, experience inequalities and inequities in the provision of, access to, and quality of health care.”
Two recent studies underscore the problem of implicit bias as it relates to pain. The first, from 2016, found that white medical students and residents falsely believe Black people have a higher tolerance for pain than white people or even thicker skin; another, published in 2019, showed that white people have difficulty recognizing pain in the facial expressions of Black people.
While clinicians need to be aware of and work to counteract their implicit bias, there also simply needs to be a more diverse health care workforce, one that better represents the diversity of the patient populations served. For example: although Black people made up 13% of the overall population in the United States in 2018, according to the Association of American Medical Colleges, only 5% of doctors in 2018 were Black.
“It is crucial to see diversity in health care,” says LaQuinda McCoy, a former transplant nurse who lives with migraine and is a past participant of the INvisible Project. “As a Black woman who works in health care, my BIPOC patients felt more comfortable talking with me and allowing me to care for them properly. They prefer me more than my fellow white nurses, and we’re more inclined to treatment adherence. I have family members who flat out refuse to see a physician, and most of that comes from fear; the other comes from mistrust of white people. If there were more people of color available to treat these patients, it would ease a lot of tension and provide equitable outcomes for future patients.”
Outside of the health care workforce, BIPOC are also widely underrepresented in clinical research. A study in 2017 found that in 36 migraine-focused clinical trials, 83% of participants were white.
Another issue is health care affordability—and as the well-documented result of structural racism, racial and ethnic minorities are more likely to be economically disadvantaged. The 2019 U.S. Census Bureau found that the median Black household earned 61 cents for every dollar of income earned by the median white household, while the median Hispanic household earned 74 cents for every dollar. The census also highlighted that Hispanics were three times as likely to be without health insurance as white people, and Black people were twice as likely to be without health insurance.
In general, there are many stressors and pressures faced by BIPOC that white people don’t have to contend with.
As Cheryl McJoy said in her profile on page 37, “I don’t reflect one female but all. I reflect all Black women and all Black people. Doctors’ preconceived ideas were weighing heavily on me.”
The term “race-based traumatic stress” is now being used to describe how individuals constantly exposed to racism—whether overt or subtle—experience increased stress and therefore increased adverse health outcomes, including migraine.
A complex problem needs complex solutions
Thanks to a growing spotlight on disparities in migraine and headache, there is also an increasing effort to better address them. Interventions include the establishment of advisory groups within patient organizations, like the Disparities in Headache Advisory Council at the Coalition for Headache and Migraine Patients (CHAMP), or programs like Heralding Excellence in Access to Diverse and Affordable Care for Headache Disorders Equity (headACHE), which aims to train providers to provide better care for marginalized populations.
To learn more about these efforts, check out the article: “Inclusivity in headache and migraine care and research.”