In 1790, while serving as the nation’s first secretary of state, Thomas Jefferson was recovering from what he called one of his “periodical headaches.”
These attacks followed Jefferson throughout much of his life. His correspondence suggests that some lasted for days or even weeks, interrupting his work and leaving him unable to maintain his usual routine.
Jefferson was not alone. Serious recurring headaches have appeared throughout American political history, affecting presidents, first ladies, public servants and the families around them. As the United States marks its 250th anniversary, we should confront an uncomfortable fact: diseases that affected Americans during our founding still affect tens of millions of people today, yet our country has never built a coordinated national response to them.
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That history is personal to me. My migraine attacks began in elementary school. Because frequent headaches were common in my family, I grew up believing they were normal. I did not seek care until years later, after an attack blurred my vision and made it difficult for me to speak. I thought I was having a seizure or a stroke.
Today, I lead a national organization advocating for people with migraine and other headache disorders. I am also the mother of a 10-year-old who lives with migraine. When he was nine, he experienced an attack that lasted 12 days and ultimately sent us to the emergency room.
Two and a half centuries after Jefferson wrote about his disabling headaches, families are still learning too late that headache disorders are neurological diseases and so much more than “just a headache.”
More than 40 million Americans live with migraine and other headache disorders. They include children trying to stay in school, workers trying to remain employed, parents caring for their families, and veterans and first responders living with post-traumatic headache. They also include people living with cluster headache, new daily persistent headache, spinal cerebrospinal fluid leaks and other disabling conditions that remain poorly understood.
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The burden is also not shared equally. American Indian and Alaska Native communities have the highest reported prevalence of migraine or severe headache among racial and ethnic groups measured in national data. Yet many Indigenous communities face profound barriers to neurological and specialty care, including geographic isolation and an under-resourced Indian Health Service.
As the nation reflects on 250 years of American history, any vision for the future must include the people who were here long before the country’s founding. A national response to headache disorders must address not only how many people are affected, but who has been most consistently overlooked.
And for our fiscal hawks, headache diseases cost the United States as much as $78 billion annually through medical expenses, missed work and reduced productivity. But their full cost cannot be captured on a balance sheet.
It is measured in missed classes and lost jobs. In family milestones spent in a dark room. In parents searching for a doctor who understands their child’s symptoms. In veterans and first responders living with persistent pain after serving their country and communities.
Yet the United States has no comprehensive national strategy for addressing headache disorders.
Responsibility is scattered across federal agencies overseeing research, treatment approval, public health, insurance, veterans, military health and education. Each touches one part of the problem, but no coordinated initiative is responsible for determining whether our research, data, clinical workforce, public education and access to care match the burden these diseases impose.
They do not. Research investment remains out of proportion to the disability these diseases cause, and incomplete data make it harder to identify disparities and direct resources where they are most needed.
Stigma compounds these failures. People are told to drink more water, reduce stress or simply push through. Children may be viewed as avoiding school. Employees may be treated as unreliable. Patients with neurological symptoms can leave medical appointments feeling that they were not believed.
A disease does not become less serious because millions of people live with it. Its prevalence should be a reason for greater urgency, not continued neglect.
Thankfully, we have an opportunity to change how our country understands, studies and treats migraine and headache disorders.
The bipartisan HEADACHE Act would establish the first coordinated federal initiative focused specifically on these diseases. It would bring together agencies whose decisions already shape the lives of patients and families, including the Indian Health Service, and support research, better data, workforce development, public education, improved diagnosis, coordination of care, and efforts to reduce disparities and stigma.
It would also create an advisory council that includes patients, caregivers, clinicians, researchers and advocates alongside federal representatives. That inclusion matters because people living with headache disorders know where the system breaks down.
The legislation would also require regular reporting and an updated national plan, creating shared goals and accountability across the federal government.
The HEADACHE Act will not solve every problem overnight. It will not immediately place a headache specialist in every community, eliminate every insurance barrier or produce a cure. But it would create the structure needed to make sustained progress possible.
America’s 250th anniversary should be more than a commemoration of what earlier generations built. It should invite us to consider what we will leave to those who come next.
Thomas Jefferson lived at a time when medicine could offer him little relief from the attacks that repeatedly interrupted his life. We cannot change what was available to him or to the generations who followed. But we can decide what will be available to the next generation.
As America marks 250 years, Congress should pass the HEADACHE Act and establish the coordinated national response that millions of Americans have waited far too long to see.
Headache disorders have been part of the American story from the beginning. It is time for meaningful federal action to become part of that story, too.
Author bio:
Julienne Verdi is the Executive Director of the Alliance for Headache Disorders Advocacy and The Headache Alliance. She is an attorney, a person living with migraine and the parent of a child with migraine.
Photo by Flickr user makelessnoise