More must be done to ensure robust funding for research that is focused on diseases with disproportionate impact, like migraine. During a panel discussion hosted by Research!America on October 3, 2018 on Capitol Hill, speakers called for more research and workplace accommodations for the 40 million Americans living with migraine. “We need to make sure funding goes to diseases in proportion to the impact and the level of disability it causes,” said moderator Kevin Lenaburg, executive director, Coalition for Headache and Migraine Patients (CHAMP).
Women are three times more likely than men to experience migraine, according to Amy Miller, PhD, President and CEO of the Society for Women’s Health Research (SWHR.) Women also have longer and more intense migraine attacks, she added, noting challenges presented by the stigmatization of the illness. “We need to appreciate that we are disregarding women’s pain, and demand more research dollars for this unmet need,” she said.
Panelists also discussed the importance of workplace accommodations for migraine sufferers. “We want to work,” said Eileen Brewer, a migraine patient who serves on the board of Clusterbusters, adding that the peak age of migraine suffering is between 25 and 55, causing an estimated $20 billion a year in lost productivity. Twenty-two percent of migraine patients have lost jobs due to their condition, she noted, adding that employers should provide “compassionate” accommodations for employees who live with the disease. She described various cost-effective workplace accommodations such as anti-glare screens on computers, quiet rooms and fragrance-free cleaning products. These efforts can help prevent migraine triggers. Flexible work schedules, telecommuting options, compassionate leave time, and comprehensive health coverage to better support individuals who suffer from migraine would also help alleviate the suffering of patients, she said.
Migraine patients also have rights under the Americans with Disabilities Act (ADA), according to Stacey Worthy, JD, of the Aimed Alliance. “Migraine is the 6th most prevalent disability according to the WHO (World Health Organization),” she said, emphasizing that the ADA allows individuals with migraine to request accommodations from employers and some patients may even quality for disability payments. But, she noted, migraine is not included in the Social Security Listing of Impairments, known as the “blue book,” which would make it easier for patients to qualify for benefits. Additionally, she said, “ADA only goes so far,” and employers can refuse requests. Worthy urged migraine patients to document their requests and the results, because “the more you document, the more you are protected” should the case escalate to an Equal Employment Opportunities Commission (EEOC) filing or a lawsuit.
Going forward, “science must drive policy because policy drives change,” said Miller. “We have a lot of basic science to do” in order to better understand migraine and potential treatment pathways. “We need better treatments,” added Brewer, noting that few migraine treatments have been developed in the past decade.
Click here to see photos of the event.