Headache On The Hill


Earlier this week a record breaking 160 advocates from 46 different states took to Capital Hill for #HeadacheOnTheHill2019 to raise awareness and lobby for allocating NIH pain funding specifically for headache disorders. Our ‘askfor NIH Director, Francis Collins and Congress for The HEAL Initiative to create comparable "RFA" (Resource Family Approval) programs focused on migraine & headache disorders research in the same way they have found non-opioid pain therapies programs specifically for back pain & hemodialysis pain. This doesn’t necessarily require more funding, it instead asks for the existing budget to be reallocated in proportion to the disease burden.

Our second ’ask’, is to create a blue book listing specifically for headache disorders in order to make social security disability insurance more accessible to people with migraine and headache. As of now, a Migraineur applying for SSI/SSDI has to apply under the premise of epilepsy. Not only is that dismissive to the 1 in 7 Americans who have migraine disease but it also doesn't make any sense because these are 2 separate brain diseases that have completely different symptoms.

•Headache disorders often disable without headache (sensory, vertigo, GI, cognitive).
Only 37% of Americans with chronic migraine are employed full time.
•Americans with chronic migraine who do work lose 14% of annual productivity.
Socioeconomic status decreases as migraine prevalence increases.

Migraine is a public health issue with serious social and economic costs.

This is a solvable problem and by gathering to share our personal stories with legislators about how migraine and headache disorders have affected our lives, we are bringing our concern to their attention, with a solution in place; allocate the appropriate funding and research to find sustainable pain intervention for people ”living life on the sidelines” with migraine, cluster headache, and other headache disorders. Migraine disease effects people during their most productive years, years they would be in the workforce, contributing to the economy instead of being stuck in bed and on government aid. It’s been estimated that.

According to the Migraine Research Foundation,

  • Healthcare costs are 70% higher for a family with a migraine sufferer than a non-migraine affected family.

  • Healthcare and lost productivity costs associated with migraine are estimated to be as high as $36 billion annually in the U.S.

  • American employers lose more than $13 billion each year as a result of 113 million lost work days due to migraine.

  • Beyond the burden of migraine itself, having migraine increases the risk for other physical and psychiatric conditions with the resulting increase in disability and healthcare costs. 

  • In 2015, the medical cost for treating chronic migraine was over $5.4 billion, however, these sufferers collectively spent over $41 billion treating their entire range of conditions.

The impact that can be made by getting together for advocacy events like HOH is profound. Recent victories include funding increases, with $18 million allocated to the research of migraine and post-traumatic headache, as well as the establishment of more VA Headache Disorders Centers of Excellence. The migraine community is also celebrating CGRP, the first preventative ever created for migraine. However, like many treatments, CGRP has only been effective for a small percentage if migraineurs. We gather on the Hill to speak on behalf of those migraineirs.

Want to learn more or find out how you can help advocate from your home?

You can read more about my HOH experience from last year HERE!

Along with 3 other advocates representing Kansas, we met with representatives from offices of Congresswoman Sharice Davids, Senator Jerry Moran, U.S. Senator Pat Roberts, and Congressman Ron Estes.


Some fellow advocates who I get to see at HOH, I would definitely suggest following their blogs!

Chronic Migraine Ellie

The Migraine Warrior Blog

The Migraine Diva, (this pic is from last year because she was too sick from travel to make it to the Hill and our only time together wasn’t a time for pics. Everyone go send her some love!



Check out an older article I wrote on why your vote matters and how it can effect your migraine!