Nearly 275 health-care advocates from all 50 states converged on Capitol Hill in Washington, D.C., on March 18 to support policies that affect the more than 40 million Americans living with headache disorders and migraine disease.
This year was the group’s second year in person since Covid.
Among those leading the charge was Julienne Verdi of Voorhees, who lives with migraines, as does her 9-year-old son, Jude. Migraine is the second leading cause of global disability and the leading cause of disability among young women.
As executive director of the Alliance for Headache Disorders Advocacy (AHDA), Verdi spearheaded the D.C. visit, known as Headache on the Hill, marking the organization’s first fully in-person advocacy day since COVID. Living with both migraines and Ankylosing Spondylitis – an inflammatory disease that affects the spine – Verdi is no stranger to chronic illness.
A mother of four, Verdi has channeled her personal battles into advocacy that includes securing better care and treatment options for those affected by headache disorders.
“This work is truly a labor of love,” she said. “We train and mobilize volunteer advocates from across the country, empowering them to walk the halls of Congress and share their stories. If statistics alone were enough to change hearts and minds, the AHDA wouldn’t exist.
“It’s personal stories that break down stigma and drive real change.”
Verdi was joined on Capitol Hill by a dedicated New Jersey delegation. Among them was Casey Cashman, of Oldwick, who described the visit as empowering.
“Migraine has controlled so much of my life over the past seven years,” she acknowledged. “Participating in Headache on the Hill gave me back a sense of control.”
The delegation met with staff from the offices of U.S. Sen. Cory Booker and Congressman Donald Norcross, among others, and they hope to meet with U.S. Sen. Andy Kim soon. Verdi has also attended meetings with congressional representatives in West Virginia, Pennsylvania, and Iowa.
During the D.C. visit, advocates urged lawmakers to co-sponsor the Safe Step Act. Step therapy – or “fail-first” requirements – forces patients to try insurer-preferred treatments before gaining access to their prescribed medication. Advocates say that process can be particularly harmful to those with headache disorders, as delays in treatment can lead to worsening symptoms and disease progression.
“Being chronically ill often feels like a full-time job, especially when it comes to fighting insurance hurdles,” Verdi explained. “Although 36 states have step therapy exception laws, New Jersey has yet to pass one. That makes the federal Safe Step Act crucial for our patients.”
“Another major focus of the delegation was safeguarding NIH funding, particularly for the BRAIN and HEAL Initiatives, which are doing important work in discovering more non-opioid treatment options for headache disorders. The NIH is the largest funder of medical research in the world.”
The state delegation also advocated for increased funding for the Veterans Health Administration’s Headache Disorders Centers of Excellence. In 2023, nearly 2 million veterans sought headache care through the Veterans Administration, with cases rising among female veterans and those with traumatic brain injuries.
In addition to her national advocacy work, Verdi is a local leader, serving as an attorney and a member of the Voorhees school board. It was personal experience with Jude’s illness that led her to push for broader protections for children with migraines. Jude was one of 20 children who joined Headache on the Hill, and in every congressional meeting, he shared his story.
“I’m 9 years old, and I’ve been living with migraine for three or four years,” he explained. “It’s not fun. I go to the nurse a lot, and a few weeks ago, I had a headache that lasted 12 days. I had to go to the hospital for IV medication to stop it. Kids need more treatments for migraine.”
His advocacy and that of other young people has resulted in new U.S. Department of Education guidelines recognizing migraine as a disability under Section 504, mandating accommodations for affected students.
“It took us two years to achieve this,” Verdi said. “Now, millions of children will have better access to the support they need.”
Beyond the Hill meetings, Verdi organized several events in D.C., including an advocate convening, affinity groups, a post-Headache on the Hill awards dinner and a Congressional briefing on women’s headache health through the life stages which included remarks from Senator Marsha Blackburn and Representative Erin Houchin.Â
The group also visited Senator Andy Kim’s office and Representative Rob Menendez Jr.
“This is just the beginning,” Verdi promised of her advocacy. “We’re building momentum, and we won’t stop until we see real change.”
The Alliance for Headache Disorders Advocacy (AHDA) is a nonprofit that unites headache advocates nationwide. Learn more at https://allianceforheadacheadvocacy.org.
