by Cure AHC Vice President Tony Pena
As the 2016 Cure AHC representative to Rare Disease Week (Feb 29- March 4, in Washington, D.C.), I did not comprehend what the day nor week meant to Cure AHC and rare disease community as a whole. It represented the bringing together of over 350 advocates representing rare disease communities from around the country to speak as one, for the education, comprehension and understanding of all suffering from rare diseases.
Organized by the EveryLife Foundation, our mission was to be a team of advocates that would lobby congress and spread the word about 7,000 rare diseases, and specifically the fact that less than 5% have a FDA-approved drug treatment. One in ten Americans have a rare disease, and if all the people with rare diseases lived in one country, it would be the 3rd most populated country in the world.
We came together as one voice in our mission to raise awareness, recognition and support for treatment and cure. It was a very successful, emotional, and event-filled week.
We became one gentle loud voice to Congress.
I arrived Monday with a basic understanding of my duties after attending the EveryLife webinar, which assisted in preparing for the week. The first night, the rare diseases groups from around the country met in a very informal reception with the intention to network and share each other’s stories. At the end of the night, we all felt like family and were energized for our task ahead, to provide emotional support for our journey “up The Hill”.
On Tuesday we attended an EveryLife Foundation community class on how to deliver our story and message to the Senate and House representatives on the Capitol. I had never done anything like this before and was feeling a bit nervous. But I focused and thought of my grandson, AHC Champion James, and all the AHC kids around the world. I was then ready for the challenge and task ahead.
The EveryLife Foundation led the rare diseases groups through various tutorials on how to deliver a message that would improve the lives of people with rare diseases. We were informed of key current legislative documents/bills and regulatory issues before Congress. The purpose was to make congressional members aware of these issues and to ask for their support by voting YES on them.
We also listened to various speakers sharing their experiences on The Hill. They also coached us to be patient, respectful of time and recognize that due to scheduling commitments we may not actually meet the congressional members themselves, but rather key staff members who are their “eyes and ears”.
We then broke out to our home states to become the “lobbyist/advocates” teams that would meet the congressional representatives from each district. The EveryLife Foundation provided us with an appointed schedule and time for our meetings with congressional members.
Wednesday came and we started the day at a group breakfast with the newly appointed FDA director Dr. Robert Califf as guest speaker. We delivered a group message to Dr. Califf asking to push reform and research which would enable, create and make available the necessary drugs to help rare diseases.
We then made our way to the House and Senate, and I was fortunate enough to meet my own state’s junior senator: Senator Cory Booker of New Jersey. I also met my local district representative, Congressman Rodney Frelinghuysen. Meeting both felt like a major accomplishment given their hectic schedule. I then met five other New Jersey congressional staff members and, since my grandson James lives in Massachusetts, I joined the Massachusetts contingent and met with congressional members from that state.
My message was consistent: to thank them for past support and to continue to ask to provide financial support, listen to our needs, raise awareness, understand our special concerns and build support for legislation that will improve the lives within our AHC community around the country.
I felt I made a mark during my visit because as I spoke about AHC, I could see the intent look on legislators’ faces. I left knowing I was bringing awareness and hope to the cause by engendering support for our AHC mission and rare disease concerns around the world.
In 2017 I look forward to the journey back “up The Hill” in support of the treatment and cure for all our AHC families.