Tens of millions live with invisible headache disorders daily. Migraine, cluster headache, post-traumatic headache and the 200 other headache diagnoses affect lives without leaving visible scars.
I’m one of 40 million, and I assure you it’s so much more than “just a headache.”
Migraine shapes how I work, parent, navigate daily routines and plan. I’ve had to miss important moments and adapt my life around constant uncertainty. Now, I watch my son struggle with it, too. Like many children with migraine, he experiences pain others don’t see, understand or believe.
Women and children are disproportionately affected by headache disorders. Migraine is the leading cause of disability among women in their prime working years. Among children, it’s a significant cause of missed school days and emergency department visits.
Despite these devastating effects, access to specialized treatment is limited. There are fewer than 900 certified headache specialists nationwide, primarily in major cities, leaving rural and underserved areas without adequate care. Equally alarming is the minuscule investment in research, which receives less than 0.2% of the National Institutes of Health budget, despite the massive economic toll.
Considering direct medical expenses and lost productivity, migraines are responsible for $78 billion in annual costs in the United States. Employers lose millions of workdays yearly to migraine-related absenteeism and presenteeism (working while in pain). Migraine contributes to reduced workplace efficiency and higher healthcare spending.
This is a public health crisis hiding in plain sight — and we’re all paying for it.
The HEADACHE (Headache Education, Access, Diagnosis, and Care Health Equity) Act aims to address this issue. It would establish a national strategy specifically targeting headache disorders. This critical legislation aims to address workforce shortages, enhance patient access to quality care, encourage early diagnosis, and significantly increase investment in research and training.
This push for the HEADACHE Act is driven by a growing national movement led by the Alliance for Headache Disorders Advocacy. In March, more than 250 advocates from 45 states gathered for our annual Headache on the Hill event in Washington, directly engaging lawmakers to advocate for meaningful legislative change.
Advocacy efforts highlighted several priorities, including passing the Safe Step Act to prevent insurance companies from forcing patients to fail on cheaper medications before approving the treatment originally prescribed by their doctors. Additionally, advocates urged sustained support for the VA Headache Centers of Excellence, which is vital for veterans experiencing post-traumatic headaches from service-related injuries, and to safeguard NIH funding for headache research.
The cost of inaction is devastating. Migraine and headache disorders deserve the same urgency, innovation and funding allocated to other severe medical conditions like cancer, diabetes or heart disease.
Migraine and headache disorders might be invisible, but we refuse to remain unseen. Join me in supporting the HEADACHE Act.
Julienne Verdi is the executive director of the Alliance for Headache Disorders Advocacy and The Headache Alliance.
English (US) ·