Looking at racial disparities in migraine and headache care, why they exist and what we can do about them
The COVID-19 pandemic has shown us how a health crisis impacts different racial and ethnic groups in different ways. We call these differences disparities. They are often the result of policies and practices in the healthcare system that treat Black, Indigenous and People of Color (BIPOC) or underserved groups unfairly.
Unfortunately, the disparities in the healthcare system as a whole also appear in migraine and headache care. For example, Black headache patients report a higher pain intensity than white headache patients. But they are less likely to receive acute pain medication.
That’s just one of the racial disparities in migraine and headache care, says Dr. Jessica Kiarashi, Assistant Professor at University of Texas Southwestern Medical Center and chair of the American Headache Society’s Underserved Populations in Headache Medicine Special Interest Section.
We spoke to Dr. Kiarashi about the racial disparities in migraine and headache care. We also discussed why the disparities exist and how patients can advocate for themselves and others.
What Are the Racial Disparities in Migraine Care?
Unfortunately, disparities in migraine and headache care exist at every level, from seeking care to diagnosis to treatment. It’s important to note that the prevalence of migraine and headache disorders is similar across racial and ethnic groups. But there are differences when it comes to getting a diagnosis, getting appropriate treatment and participating in headache and migraine research across racial and ethnic groups, says Dr. Kiarashi.
Overall, BIPOC or underrepresented groups are less likely to seek care from a healthcare provider. This is also the case when it comes to migraine and headache. Among patients with headache, only 46% of black patients seek help from healthcare providers compared to 72% of white patients. This is due to a variety of factors such as discrimination, economic issues and lack of access. We will discuss these more later on.
Getting a Diagnosis
“In general, Black and Hispanic patients are less likely to receive a headache or migraine diagnosis than white patients,” says Dr. Kiarashi. Only 47% of blacks with headaches have an official headache diagnosis compared to 70% of white patients. Latinos with headaches are 50% less likely to receive a migraine diagnosis than white patients. This is significant because patients without a migraine diagnosis cannot receive migraine specific therapy.
Only 14% of black headache patients receive prescriptions for acute migraine medications, compared to 37% of white headache patients. Although data is sparse, Latinos are also more likely to have limited access to chronic pain care. That’s even when accounting for things like socioeconomic status and education.
Representation in Research
BIPOC are also underrepresented in studies about migraine and headache. Dr. Kiarashi and a team looked at 16 migraine studies from neurology publications in 2019. Only six of those studies reported participant race, and the percentage of white study participants ranged from 74.7% to 97%. “It’s not necessarily because this is representative of the race of migraine [patients], but rather an inability to recruit patients from underrepresented groups,” she says.
This is important because a lack of representation in research can worsen disparities. For example, if a treatment works better in one group than another, there would be no way to know that if the sample didn’t represent the population accurately.
Why Are There Racial Disparities in Migraine Care?
There are many reasons for these disparities. They are generally the same reasons such disparities exist in healthcare as a whole. Racism, a mistrust of the medical community and a lack of representation all play a part, says Dr. Kiarashi.
Discrimination can even surface in those with medical training. A 2016 study found that half of white medical students had false beliefs about biological differences between blacks and whites. This can lead to greater racial disparity when treating pain.
Several studies have found that BIPOC report experiencing discrimination when seeking medical care. More than one in five American Indians and Alaska Natives, more than one-third of blacks and one in five Latinos reported experiencing discrimination from healthcare providers. Discrimination has a far-reaching impact; BIPOC or underserved groups also avoid seeking care because they’re afraid about experiencing discrimination.
Institutional or systemic racism has also contributed to negative impacts on health. “Laws, even at local, state, federal levels, provide certain advantages for certain racial groups who are deemed superior while oppressing other racial groups,” she says. One example was the practice of not insuring mortgage loans in black neighborhoods, known as redlining, which started in the 1930s and worsened segregation. Negative health outcomes like maternal depression, mental health issues and cancer are all more common in previously redlined areas.
The relationship between patients and their doctors is based on trust. Because of historical wrongs, that relationship is often broken, says Dr. Kiarashi. For example, atrocities such as the Tuskegee Syphilis study contributed to mistrust. The study deceived black men into believing they were receiving free medical care from the government when in fact, it sought out at the results of untreated syphilis. None of the men ever received any treatment.
What Can We Do to Address the Disparities?
Breaking the cycle of healthcare disparities requires systemic and personal change. While there are things patients can do, providers also need to recognize their own biases and incorporate cultural sensitivity and competency into their practices.
For patients, communications and advocacy is key. “I think the most important thing that patients can do is to empower themselves with information and be their own healthcare advocates,” Dr. Kiarashi says. The American Migraine Foundation has free, downloadable guides about handling a migraine diagnosis, talking to your doctor about migraine and advocating for yourself in the emergency room.
Educating patients about migraine, including their options and what happens if they don’t get treatment, can go a long way in helping combat some of these disparities and help build trust with their healthcare provider. “The important thing is for them to feel empowered enough to be able to ask questions and to make their voices be heard at these appointments,” said Dr. Kiarashi. She also points out that this has a positive ripple effect, allowing providers to ensure that patients’ needs are met and that they will follow through with treatment.
“There are disparities that exist at every level of healthcare,” says Dr. Kiarashi. “These changes aren’t going to happen overnight, but we all just have to work together to make sure we eliminate these disparities to get to a place where everybody has equitable care and everyone is treated equally within the healthcare system.”
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.