Combating Racial Disparity in Migraine

“It is a very real issue and experience that many people of color have to deal with. Having to prove my pain over and over again, it’s exhausting,” Jaime says. 

Jaime may be exhausted, but she is also fed up. Through her public speaking, blogging and activism, she is part of a growing movement to fight the unconscious bias, racial disparities and underrepresentation that prevents some Black migraine patients from receiving the care they deserve. “Without voices speaking truth to that and shedding light on the racial disparities that so many deal with, we won’t have equity in headache care,” she says. 

Jaime was diagnosed with migraine at age 8. The fact that she received a diagnosis at all was unusual, she says. Her family was attuned to Jaime’s early symptoms, which included pain and light sensitivity but also signs of abdominal migraine, because her mother lived with migraine. And her father, who worked in healthcare administration, was persistent in his pursuit of appropriate care for his young daughter. “Because of his tenacity, I was able to see a neurologist in New York in 1986, which definitely was not the norm for a brown girl growing up during that time,” she recalls.

Jaime managed episodic migraine throughout her youth. By the time she was 25, she had transitioned to chronic migraine, defined as headache occurring on 15 or more days per month for three or more months, with at least 8 headache days per month having the features of migraine headache. (3) Her symptoms include extreme light and sound sensitivity, nausea and severe pain, typically behind her left eye. At its worst: “It feels like getting hit on the head with a hammer and I just want to pull my eyeball out,” she says.

 
Unfortunately, Jaime’s transition to chronic migraine is not unique: According to the American Migraine Foundation, about 2.5 percent of people with episodic migraine transition to chronic migraine each year. (4)

Research shows that Black women with migraine also are more likely than their white counterparts to experience depression, (5) and Jaime knows this truth well. The constant-ness of migraine can eat away at a person, and one’s sense of self can become lost in the disease, she explains. “I tried to check out. I attempted suicide. Twice,” she says. “But I’m still here because I believe there is a bigger purpose to my pain.”

With medication, therapy and a self-care regimen that includes mindfulness, she says she has learned to love her life again, and she wants others to experience that joy, too. “This might not be the life you thought it was going to be, but there is still beauty and value in the life you have,” she says. “I’ve come through the darkness and found my voice to speak up for myself, and now for others, too.” 

“We all have biases. We need to check them at the door.”

Jaime is particularly passionate about spreading her message to Black people living with migraine, who may feel unheard or undervalued in their interactions with healthcare providers. In fact, research studies indicate that implicit bias – negative unconscious or automatic feelings and beliefs about others – against Black and dark-skinned individuals is still held by many healthcare providers. ⁶ And this bias may impact health outcomes. Studies show that Black Americans are less likely to receive a migraine diagnosis or be prescribed migraine medication. ⁵ Even today, in 2021, healthcare providers may not be as “woke” as they would like to think, Jaime says. 

“I’m constantly aware of the skin I’m in, and rather than rejoicing in the beauty of it, I am cognizant that it will dictate how I am treated. Regardless of where you come from, we all have biases. You need to check them at the door and focus on ‘what can I do to help you?” she says to the headache medicine community. 

Bias may also be stalling the scientific community’s understanding of the origins and impact of migraine on people of color. A review of headache clinical trials found that non-whites are vastly underrepresented, with white participants accounting for more than 80 percent of trial participants. ⁷ Studies also did not analyze safety or efficacy of potential treatments by race. ⁷

This underrepresentation in research, the headache medical and patient community is what Jaime is dedicated to reversing. Among her efforts, she is a member of the Disparities in Headache Advisory Council, a collaborative effort comprised of patient-advocacy organization leaders, headache patients and healthcare providers working to identify and determine solutions to racial disparities in headache medicine. The group will also be making recommendations for diversifying the headache patient community. Lundbeck is a founding sponsor of the group. 

“This is about having uncomfortable conversations and asking people to check their privilege and do the work so our progress in migraine can encompass all communities of people,” she says.