As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy. They contacted everyone on their contact list and asked them to participate in In-District Lobby Days. I simply registered on their website and notified them of my availability so that they could schedule appointments for me with my Senator and Congressman.
I visited Senator Kirsten Gillibrand’s office as a
representative of our group, and was joined by others
lobbying for their respective rare diseases. We met with
Senator Gillibrand’s senior advisor, who spent over
half an hour with us listening to our stories and our
“asks.” I highlighted the need for sponsorship for the
Medical Equity Act, which would mandate coverage of
metabolic formulas and low protein foods.
When I met with Congressman Engel, it was me alone
with him and his Chief of Staff! We shared family
stories, talked a bit about politics in general, and then
got down to my specific concerns. Congressman Engel
is a member of the Rare Disease Congressional Caucus,
so I knew I had a supporter sitting in front of me. He
asked me to tell him about MSUD, which I did in great
detail. I then told him about this specific bill and asked
him to consider co-sponsoring the legislation. Of
course he said he needs to read the bill first, but did
assure me that this was a piece of legislation he was
likely to support. I also emphasized the need to fully
fund the FDA and NIH, which he agreed was vital to
the health of our nation. Unfortunately I forgot to ask
for a picture!
Advocating with my elected officials was easy to do
and, truthfully, fun! When people hear our stories, they
want to help. I urge every one of you to try it!
- Written by Administrator