|Laurie Kelley with Debbi Adamkin,|
executive director of Florida chapter,
mother of a child with hemophilia (and dear friend!)
|We are blessed to have |
Ellen Riker on our side!
|NEHA ready to lobby!|
The next speaker Wednesday night was Travis Albright, an articulate young man from Michigan who serves as an aide for representative Gary Peters. He advised, “Lobbying can be intimidating, but you are the most important person there. You have a story to tell. I would prepare facts and figures when I would lobby, but the [hemophilia] camp stories I told made the biggest impression. Every representative in the House represents 600,000 people. You represent your community, which is small. You have awesome power to speak for everyone.”
|Laurie Kelley: first time lobbyist!|
I have met with Prime Ministers, Health Ministers and even many celebrities. No problem. But I have never once met with my representatives or senators, and I was feeling nervous! All the speakers put me at ease, and it helped to know I was going with my local group, New England Hemophilia Association (NEHA), an experienced lobby group.
That night we gathered in the Marriott lobby bar to greet old friends, meet new ones, laugh and get ready for the big day.
|Laurie Kelley with Jose de la Riva,|
chair of NHF, father of son with
|NEHA meeting with Jim Gordon of rep. Stephen Lynch|
|Nothing stops these guys from lobbying!|
We had excellent meetings. We noted that some of the representatives' aides were more observant, some were extremely engaged, some chatted about their own experiences in healthcare system, but all expressed an interest in supporting our causes. We can’t say definitely, but I think we scored a couple of co-sponsorships for H.R. 460! I was deeply impressed by the mostly young aides: how intelligent, poised and responsive they all were.
|Mother Diane Lima explains |
healthcare costs for hemophilia
I cannot praise NHF enough for their fantastic organization of this event. It went without a hitch, and everyone worked hard and yet had a great time. I’m hooked. I’ll be back next year. And I’ll be watching the political fallout of the budget deficit management much more carefully, now that I’ve dipped my toe into the political waters of hemophilia reimbursement.