Headache on the Hill, which took place March 22-23, is an annual advocacy event in Washington DC organized by the Alliance for Headache Disorders Advocacy (AHDA), whose mission is to advocate for equitable policies for people with headache diseases—including intracranial hypotension. Spinal CSF Leak Foundation is a proud member of AHDA, and this year sent three advocates to HOH, including Tammie Stanford, who shared her experience below.
“I don’t belong here,” I said to myself during my first meeting with my Massachusetts Headache on the Hill team members. I was sure the other patients, doctors, and advocates were much more qualified than I to sit in front of U.S. Senators, Representatives, and their staff to present the case for more funding for research and support for the millions of patients who live with migraine, cluster headache, and many other headache disorders—including my diagnosis of spontaneous intracranial hypotension (SIH) due to spinal cerebrospinal fluid (CSF) leak. But soon I learned that my experience of having a traumatic brain injury (TBI) that eventually led to my spinal CSF leak diagnosis actually had much in common with this year’s HoH initiatives. In fact, my team felt that my story in particular could be a powerful illustration of why Congress needs to be doing more to help people with headache disorders, and urged me to share it.
Since 2007, Headache on the Hill has been a day when physicians, researchers, and patients have descended upon Capitol Hill to advocate for initiatives meant to help those living with headache disorders, meeting with Senators, Representatives, and staff from all 50 states. This year, HoH was virtual. Instead of gathering in Washington DC, we met online from the homes and offices all across the country. This had many advantages—for one thing, without the physical demands of travel and in-person meeting, the event yielded a larger number and broader representation of patient participants. For people like me, lingering cognitive and pain issues are often exacerbated by the physical and mental work of even seemingly simple things, and the “let down” after such exertions lasts for many days. Being able to participate and still take the rest I needed in my own home was something for which I’m quite grateful, and made it possible for me to engage.
Groups of participants from each state were put into state “teams,” and my incredible and supportive Massachusetts team members included Cindy Steinberg (National Director of Policy and Advocacy for the U.S. Pain Foundation, and Policy Council Chair for the Massachusetts Pain Initiative); Lisa Benson (migraine patient, Migraine Research Fund Ambassador, and writer for Migraine.com); Michelle Tracy (patient advocate); Luanne Rich, MD (physician and mother of cluster migraine sufferer); and Paul Mathew, MD (Assistant Professor of Neurology at Harvard Medical School), who dubbed our group “Team Mass Effect.”
The first HoH “ask” this year was a request to fully fund VA Headache Disorders Headache Centers (HCoEs) to double the number of headache centers of excellence within the Veterans Administration. There are currently 14 such centers in the U.S., but many veterans live too far from them to get the care and treatment they desperately need. [YOU CAN HELP! To support the expansion of the VA Headache Disorders Center of Excellence, and send an email to your representative, click here.]
The second “ask” was for Congress to put pressure on the National Institute of Health (NIH) to allocate more of its funding from the HEAL Initiative to headache research—including intracranial hypotension. The goal of this is to secure $50m funding for NIH headache disorders research. Headache disorders are the least funded NIH research area among the most burdensome diseases, and unfortunately, too many patients with headache disorders still do not have adequate treatment options. Research is desperately needed to address the complexities of treatment and reduce suffering. [YOU CAN HELP! To send an email to your representative urging the NIH to fund headache disorder research, click here.]
With my team’s encouragement, I shared the story of my TBI and spinal CSF leak as we met with the offices of Senator Elizabeth Warren, Senator Ed Markey, Representative Katherine Clark, and Representative Seth Moulton. I connected my experience with the help we were asking for, pointing out that my delayed diagnosis could have been much shorter if there had been more research into headache conditions, and noting how my fight to find adequate care and the need to travel across the country for treatment related to the need for more VHS HCoEs throughout the country. Though we were not able to meet directly with any member of the Massachusetts delegation, every legislative aide and staff member we spoke with listened intently and reacted with sympathy and a willingness to convey to their bosses not only what our team was asking Congress, but our stories as well. It was heartening to see that, though many of the symptoms we struggle with are invisible, we were not invisible to them.
It was during our meeting with Casey, a legislative aide to Katherine Clark, that the true gift of HoH and sharing my story came to light. This young man knew all too well how disabling headaches affect patients, because he watched his single mom suffer for decades with a mysterious condition that seemed misdiagnosed. After listening to me, it dawned on him that the symptoms I was describing fit his mother’s story. I shared my contact information and the Spinal CSF Leak Foundation’s website. At the end of our meeting, he thanked us for our time, and promised to relay our asks to Representative Clark.
A few hours later, I received an email from him. He had called his mother after our meeting and spent a long time with her on the phone going over the Foundation website. They cried together. He said they finally had hope that she might get a correct diagnosis, and that she no longer felt alone in her suffering. Then I cried. Not only had I been able to advocate for the specific asks for the 2021 Headache on the Hill, but through sharing my arduous journey of the past six years, I was able to help someone else understand her own journey, and connect her with resources to get the help she needs.
I did belong there, after all.
AHDA Current Initiatives
Link to support NIH request for headache disorder research
Link to expand the number of VA Headache Disorders Headache Centers