VERDI: Migraine Is More Than Pain, It’s a Public Health Crisis
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. It’s heartbreaking as a parent to watch a child miss school, birthday parties and joys due to a disease so often misunderstood and dismissed.
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 percent of the National Institutes of Health budget, despite the massive economic toll.
The economic effect of headache disorders extends far beyond the individual. 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. And, of course, families shoulder not only the physical and emotional burdens but often the financial one as they navigate costs for treatment, travel to specialists, and the loss of income.
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. Advocates included clinicians, researchers, caregivers, patients and children affected by headache disorders.
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. We are particularly concerned about the potential cuts to the NIH budget, as further reductions would significantly hinder progress toward understanding, treating and ultimately preventing headache disorders.
To amplify this critical message, tens of thousands of purple flags were planted on the National Mall in Washington as part of a massive public art installation. Each flag symbolized an individual living with a disabling headache disorder, vividly illustrating this hidden epidemic. These flags represented children missing class, women forced out of careers, veterans enduring chronic pain, and families quietly bearing the daily burden. It underscored the urgent need for increased awareness, funding and comprehensive policy solutions.
The cost of inaction is devastating, leading to more lives lost, whether through suicide linked to chronic pain and despair or lives diminished by isolation and stigma. People suffering from headache disorders need far more than validation; they need tangible policy action. Migraine and headache disorders deserve the same urgency, innovation and funding allocated to other severe medical conditions like cancer, diabetes or heart disease.
It’s about giving millions of Americans with chronic headache disorders a lifeline. Improving research funding, expanding access to specialized care, and ensuring equitable insurance practices can fundamentally transform lives.
Migraine and headache disorders might be invisible, but we refuse to remain unseen. Join me in supporting the HEADACHE Act.
