The True Face of Migraine
The migraine community mirrors the rainbow diversity of the United States, with people of all races impacted by the debilitating brain disease.1 But that diversity is not always recognized. In fact, research shows that while prevalence is similar across races, non-white people are less likely to be diagnosed with migraine and more likely to be undertreated.2,3,4
Now, a group of migraine advocates, with support from Lundbeck, is working to change that, raising awareness of racial disparities and implicit bias in migraine medicine, research and advocacy. “This is about having uncomfortable conversations and getting people to check their privilege and bias,” says Jaime Sanders, a migraine advocate and blogger known as The Migraine Diva. “From our healthcare providers, advocacy organizations and drug makers, we are asking people to do the work needed to encompass all communities of people.”
A call to take action
The Disparities in Headache Advisory Council (DiHAC) was launched in the summer of 2020, as the COVID-19 pandemic wracked a disproportionate toll on communities of color and Black Lives Matters protests erupted across the country. Organized by the Coalition for Headache and Migraine Patients (CHAMP) and Sanders, DiHAC was formed to address the inequities and systemic racism of the American healthcare system as experienced by people with migraine. “We looked at the bigger societal issues and conversations taking place and asked, ‘what does that mean for our space?’” says Kevin Lenaburg, executive director of CHAMP. “It galvanized us to take action.”
We’re raising consciousness of bias and inequities in migraine, so that all people can have the care and support they deserve.
Racial disparity in migraine is not new, but there is a unique opportunity to make progress against it now, says Sheila Thorne, an expert in multicultural healthcare marketing who is serving as an advisor to DiHAC. “COVID focused attention on racial disparities in healthcare and pushed it up on the national agenda. People are looking beyond the existence of racial inequities and looking for action to address it,” she explains. “Through DiHAC, we’re raising consciousness of bias and inequities in migraine, so that all people can have the care and support they deserve.”
Bringing more voices into the conversation
Comprised of advocacy-organization leaders, BIPOC (Black, Indigenous, People of Color) headache patients and healthcare providers, the Council is focused on identifying solutions that can address racial disparities in headache medicine. It also is working to diversify the engaged headache patient community. Members meet regularly for cross-cultural competency training and presentations from leaders of disparity-reduction campaigns in other disease states.
The Council recently awarded a series of seed grants to projects that will address headache disparities and increase patient community diversity. Funded projects include one designed to strengthen headache knowledge of medical students, another to develop headache medicine providers for the Native American communities and one to engage the BIPOC community in migraine disease advocacy. Projects will run over the next year.
For Sanders, DiHAC’s success at diversifying the advocacy community will be easy to measure: Her phone will ring less and she’ll no longer be the go-to source for insights into the BIPOC experience with migraine. “I’d love to hear more voices and more stories,” she explains. “I’m just one person, and my experience is unique to me. I can’t speak for all Black people, or Hispanic, Asian or LGBTQ experiences. Success for me be will when those other voices are acknowledged and given a platform.”
Building trust in research
One important aspect of DiHAC is its collaboration with industry partners like Lundbeck. The biopharmaceutical industry can address racial disparities by incorporating diversity into the earliest stages of migraine medicine, Thorne says. For example, diversity in clinical trials can determine if a medication will be effective and well-tolerated by all migraine patients. But one analysis found that migraine clinical trial participants are overwhelmingly white, while BIPOC individuals are underrepresented in migraine research.4
Long-standing mistrust of research, stemming from past abuses and unethical incidents such as the Tuskegee syphilis study, is a barrier to diverse enrollment, Thorne says. But industry has a responsibility to regain that trust—and can start to do so through authentic outreach. “There is a barrier because of history and because of current situations,” she says. “You have to demonstrate that you are trustworthy, and then you have to show that this isn’t just a box you check during Black History Month. It’s about trust and accountability.”
Lundbeck is committed to advancing diversity in all our clinical trials and recently committed to the first-ever industry-wide principles on trial diversity. The principles, put forth by the industry trade group PhRMA, focus on four main areas: building trust and acknowledging the historic mistrust of clinical trials within Black and Brown communities, reducing barriers to clinical trial access, using real-world data to enhance information on diverse populations beyond product approval, and enhancing information about diversity and inclusion in clinical trial participation.
It has to be about engagement and dialogue and understanding the life of these patients, as it relates to their social determinants of health.
Gathering inclusive insights
Beyond diversifying trial enrollment, DiHAC is asking industry to consider the lived experience of BIPOC migraine patients and commit to gathering more inclusive patient insights. “It has to be about engagement and dialogue and understanding the life of these patients, as it relates to their social determinants of health,” Thorne says.
At Lundbeck, raising the patient voice is a top priority, and our commitment to the migraine community runs deep. But there is acknowledgement our dialogue with patients can go deeper and be inclusive of all cultural populations. “We’re continually striving to meet the unmet needs of people impacted by brain diseases. But sometimes we need to pause and consider the ‘why’ of unmet need,” says Charise Dunn, Senior Manager of Patient Advocacy. “By focusing on the disparity and inequity that some people with migraine experience, we better understand how we can help every person to be their best.”
References
1. National Center for Health Statistics, National Health Interview Survey, 2015-2018. Crude percentages of migraines or severe headaches for adults aged 18 and over. Last accessed 2/16/2021. https://www.cdc.gov/nchs/nhis/ADULTS/www/index.htm
2. Nicholson RA, Rooney M, Vo K, O’Laughlin E, Gordon M. Migraine care among different ethnicities: Do disparities exist? Headache. 2006; 46(5):754-765
4. Heckman BD, Britton AJ. Headache in African Americans: An Overlooked Disparity. Journal of the National Medical Association. 2015; 107(2):39-44.
5. Robbins, NM, Bernat, JL. Minority Representation in Migraine Treatment Trials. Headache. 2017; 57(3):525-533.
