Headache on the Hill is an event held annually by the Alliance for Headache Disorders Advocacy in Washington, D.C. Each year at Headache on the Hill, volunteer advocates come together to personally present Congress with requests, or “asks,” which aim to spotlight legislation affecting the headache community.
This year’s event, which took place on February 14, 2023, featured nearly 300 patients, caregivers, medical providers, and researchers from 48 states meeting with their state and local representatives to advocate for headache disorders. The asks this year were threefold: One, to safeguard access to special education services to children with headache disorders. Two, to support long COVID headache research. And three, to create a House headache caucus.
This year, the Spinal CSF Leak Foundation had six patient advocates attend Headache on the Hill. One of them, Claudia Perez Sandhu—a primary care physician who also experienced a spinal CSF leak—shared her experience with us.
Hi, Claudia! Tell us a little bit about yourself.
I’m a primary care physician and I work in a large adult and family medicine practice where none of my colleagues had ever heard about spinal CSF leak. I was diagnosed with a spontaneous spinal CSF leak in 2020. After several unsuccessful attempts to patch the leak, I underwent surgery. Thankfully, I no longer have a leak
How has spinal CSF leak affected you?
When I was symptomatic, I could not do anything. Taking a shower or going to the bathroom was all I could barely do upright, due to the excruciating pain I felt. I couldn’t work, cook, care for my family, or even take our new puppy for walks.
What was it like attending Headache on the Hill 2023?
Attending Headache on the Hill gave me hope about the future of headache disorders. It made me feel that perhaps I could be part of a crucial change in laws that would help increase research and provide accommodations needed for children and others who suffer from these disorders.
Did this year’s “asks” have any special personal meaning for you?
Yes, I was really excited about presenting the Headache Caucus ask. This was very special to me after I learned that the NIH has the lowest allocation of funding for research of headache disorders despite the high prevalence of these conditions. I think increasing funding for research is particularly important for spinal CSF leak patients because more research is needed for the many patients who are still suffering from symptoms despite treatment.
Overall, what did you learn from participating in Headache on the Hill 2023?
I learned about the struggles patients with other headache conditions go through. And I learned that coming together as a group, we can hopefully make a difference for the 40 million Americans suffering from these conditions.