Waltham advocate joins national effort to push for headache disorders legislation

Lisa R. Benson of Waltham spoke to members of the Massachusetts Congressional delegation during the Fall 2025 Virtual Headache on the Hill on Sept. 30, joining advocates nationwide in calling for federal action on behalf of the more than 40 million Americans living with headache disorders.

This year’s event marked a milestone for advocates with the introduction of the Headache Act, the first standalone bill dedicated to addressing the national crisis of migraine and headache disorders. Benson joined 240 participants from across the country urging Congress to cosponsor the measure, led in the House by Reps. Lori Trahan, D-Mass., and Brian Fitzpatrick, R-Pa. The proposed law would establish a national strategy to coordinate research, expand access to care and combat stigma surrounding headache diseases.

Advocates also encouraged lawmakers to support the Safe Step Act, legislation that would limit so-called “fail first” insurance policies requiring patients to try less effective treatments before receiving those prescribed by their physicians. That bill is sponsored by Reps. Rick Allen, R-Ga., and Lucy McBath, D-Ga., and Sen. Lisa Murkowski, R-Alaska.

Benson, who has lived with debilitating migraine since her 20s, said she developed chronic migraine — a condition defined as experiencing 15 or more headache days a month — by age 28. Now in her 40s, she said advocacy helps her feel less isolated by the disease.

“I spent many hours in my 20s and 30s alone in a dark room, missing family events, work and time doing hobbies I love,” Benson said. “At least now I can use what felt like wasted time for good.”

Headache disorders such as migraine, cluster headache, trigeminal neuralgia and post-traumatic headache are among the world’s most disabling conditions, yet remain underfunded and poorly addressed in health policy. They cost the U.S. economy an estimated $78 billion annually, according to the Alliance for Headache Disorders Advocacy.

“By sharing my story with lawmakers, I hope to show that headache disorders are not just headaches,” Benson said. “We need Congress to recognize the seriousness of these conditions and take action.”

The Alliance for Headache Disorders Advocacy, founded in 2008, is a national nonprofit that unites patients, caregivers, and clinicians to improve the lives of people with headache disorders. Its annual Headache on the Hill event brings stakeholders together to educate lawmakers and advocate for better care and research.