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 one-
half 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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