Headache on the Hill

12th Annual Headache On the Hill (HOH)

By Chris Young

The 12th annual Headache on the Hill (HOH), sponsored by the Alliance for Headache Disorder Advocacy, was held in Washington D.C. on February 11-12. Since 2007, headache specialists, researchers, bloggers and patients have come together in Washington D.C. to share stories about the impact migraine and/or cluster headache disease has had on so many lives – 4 million Americans have chronic daily migraine; 39 million Americans live with migraine.

Most importantly, advocates come together to deliver a unified “ask” or specific request members in House of Representatives and Senate. More than 150 advocates represented those with migraine disease to ask our Members of Congress for specific language; this request would direct the Social Security Administration (SSA) to revise disease listings for determination of benefits for people disabled by migraine and other headache disorders. The request would also direct the National Institutes of Health (NIH) to prioritize research on migraine and headache disorders via the HEAL (Helping to End Addiction Long-term) Initiative.

Migraine is the 2nd leading cause of all global disability, and cluster headache is reported to be the most severe pain that humans can experience.  Headache disorders often disable even in the absence of headache (e.g. sensory disturbances, vertigo, cognitive problems) and 20 percent of people who have migraine more than 15 days each month self-report as “occupationally disabled.” While migraine is not often thought of as fatal, migraine with aura is associated with a 20 percent increased risk of mortality over five years, and the suicide rate among people with cluster headache is 20 times the national average.

Americans with headache disorders face unjust barriers to qualify for SSDI/SSI benefits. In the qualifying process, SSA SSDI/SSI claimants must correlate their impairments to those listed for their disease in the SSA “Blue Book.” The Blue Book contains no listing for any headache disease or disorder. Therefore, if a person is disabled by a headache disorder, SSA directs him or her to compare his or her impairments to the listings for epilepsy.

SSA only approves 17 percent of initial headache SSDI claims, versus 51 percent for MS, and 78 percent for Parkinson’s, two diseases that are listed in the Blue Book. The current SSA policies violate due process and equal protection rights of headache claimants.

Headache disorders are not just another group of pain disorders. Mutations in nine different genes strongly increase migraine susceptibility, but none of these genes is linked to any other pain disorders. Seventeen prescription drugs are FDA-approved for migraine or cluster headache, but none are also FDA-approved to be used for any other pain disorders.

Migraine and headache disorders are the least funded NIH research area disproportionate to their disease burden compared to other U.S. diseases. Migraine accounts for 46 percent of the U.S. disability burden due to neurological diseases and stroke, but migraine research comprises just 0.6 percent of all NINDS (National Institute of Neurological Disorders and Stroke) extramural funding. NINDS research funding on headache disorders dropped 30 percent between 2013 and 2017.

The deadline for Members of Congress to sign on to the House Dear Colleague Letter was March 31. In addition to our lead, Peter Welch (D-VT) and co-lead, David McKinley (R-WV), with the help of the emails from the advocates that met in Washington D.C, we had 20 more offices sign on to the letter. A few additional facts: 

  • Signatures were bi-partisan: 18 democrats and 4 republicans in total
  • In person visits matter: Of the 22 signatures collected, 20 of these were from offices that our advocates met with during HOH. 
  • The letter was submitted without edit. Often the language in an initial draft gets edited to include suggestions or changes from supporting offices. The language was left intact and submitted as requested. 

The cosponsors were:    

Peter Welch (D-VT),  McKinley for Congress (R-WV),  Congressman Peter King (R-NY),  Kathleen Rice (D-NY),  Christopher Smith (R-NJ),  Chellie Pingree (D-ME), Terri Sewell (D-AL),  Scott Peters (D-CA),  Engel for Congress (D-NY),  Alan Lowenthal (D-CA),  Representative Stephen F. Lynch (D-MA),  Congresswoman Susan Davis (D-CA),  Peter DeFazio (D-OR),  Ted Lieu (D-CA),  Elissa Slotkin for Congress (D-MI),  Mike Levin (D-CA), Joe Neguse (D-CO),  Katie Porter (D-IA),  Mary Gay Scanlon (D-PA), Louie Gohmert (R-TX),  Lucy McBath (D-GA) and  John B. Larson (D-CT).