Each year the Alliance for Headache Disorders Advocacy (AHDA) organises a day of “stomping on Capitol Hill” for migraine research. (For anyone who has not heard of Capitol Hill before, it’s the area which is seen as the centre of politics in Washington in the U.S. (ever since Thomas Jefferson’s naming of it in the early 19th century).
Stomping on the Hill might just sound like another protest march which will only be ignored or, if you’re lucky, briefly mentioned in the evening news, but it is far more than just gathering with protesters with placards and catchy chants in the hope that politicians will sit up and take notice. In reality it involves meetings and training sessions and an opportunity for doctors, migraine sufferers, caregivers, advocates, and others affected by migraines to meet members from the House of Representatives and really get their voices heard.
The day before the meeting on the hill, a training session is given to participants to tell them about the “asks” for that year’s meeting, asks which will be discussed the next day. In the past the asks have been that; the National Institute for Health should account for disease burden in funding decisions (i.e. consider how many people the condition affects and fund accordingly (migraine is the least publicly funded of all neurological illnesses compared to its economic impact); and that the Veteran’s Association should prepare for the wave of post-traumatic headache and chronic migraine patients that there will be returning from a tour of duty (concussions received while on duty can cause migraines and chronic headaches).
Then on the day itself each participant is matched to their own state Representatives so that they can tell their Rep what the key issues affecting migraine sufferers in their state are. Also the asks from the day before are discussed, new guidelines and new laws proposed, and a good deal of migraine awareness raised.
This does all make a difference. Thanks in part to the Stomping on the Hill events, the NIH does now by law have “to consider the relative burden of pain in prioritizing the overall NIH research portfolio”. This should directly benefit migraine research when the question of funding provisions comes up with the NIH. So the asks which the hill events propose are clearly heard and listened to.
The date for 2017, which will be the 10th Annual Headache on the Hill event, has been set for the 14th of February, with an evening training session on the evening of the 13th. Anyone wishing to take part is encouraged to go along and “join the fight to educate lawmakers on migraine and headache disease”. Now we just need similar events in the UK and other countries!
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