In this advocacy effort , it is essential that the many patients who participate play a major role . Initially , when the event began in 2007 , all of the participants were physicians . Now , according to Shapiro , about onehalf of the participants are physicians and allied health practitioners and the remaining half are patients .
“ This would not be a successful program , if it was just the physician ’ s talking .” Katie MacDonald , a patient of Dr . Shapiro , said . MacDonald , who began participating in HOH in 2015 , said that by describing her experiences — the amount of treatments she has tried and the amount of work she has missed — makes a difference in the eyes of the members of Congress with whom she meets .
“ The most important thing people bring is their own story ,” said William Young , MD , President of the AHDA .
Young said patients volunteering their time and paying for transportation to Washington , D . C . impacts the discussion with members of Congress whom they meet . He acknowledges that AHDA asks a lot of patients when it comes to HOH , especially for those patients who are ill with headache or migraine . However , many participants believe it to be an important experience .
“ Most people find it to be a very gratifying experience ,” Shapiro said . “ They are grateful they have an opportunity to speak out on an issue that ’ s very personal to them and extremely important . They are very grateful the way our government works . They are in access to people who have power to change things .”
Young said it is a great honor to participate in the right to petition your representative for appropriate laws . Since its inception , about 350 individuals have participated in HOH and many have returned year after year . “ It changes
people ,” Young said . “ It ’ s an extraordinary experience .” The two-day event begins with a half-day seminar at which participants learn about the process and the “ ask .” The second day is filled with meetings with Congressional representatives . Shapiro said this can be an exhausting experience for someone with disabling migraine .
However , even those unable to make the trip to D . C . can find a way to participate and be their own advocate .
“ I think everybody is a patient advocate but they may not realize it ,” MacDonald said . “ We all have a voice and we use it in a different way .”
She said the first step in being your own advocate is admitting that you have migraine . MacDonald , who has experienced migraines for 28 years , said she did not openly talk about it until the last 5 years .
“ If we keep not talking about it , we ’ re never going to get anywhere ,” she said .
MacDonald suggested talking to friends , getting involved in group events such as Miles for Migraine , and blogging can be great ways to be your own advocate .
Conclusion
We at the National Headache Foundation consider Headache on the Hill and other advocacy events as a “ Call to Action .” Patients are encouraged to seek ways to advocate for themselves , whether at work , school , or in their families . It is through active engagement that patients will increase their access to quality care .
In an upcoming issue , we will report on the activities of the 2017 Headache on the Hill and results from this process . HW
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