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Sunday, March 03, 2013

The Power of the Common Person: NHF’s Washington Days

Laurie Kelley with Debbi Adamkin,
 executive director of Florida chapter,
mother of a child with hemophilia (and dear friend!)
Don’t be nervous! Ellen Riker told the attentive audience of first-timers at NHF’s Washington Days on Wednesday, February 27. I was thrilled to be among the first-timers. And I took a lot of heat for that. For all I have traveled the world, and been involved with our community for about 24 years, I have never attended Washington Days! I’m usually in a developing country, as winter provides mild temperatures overseas. But now, I’m hooked on Washington Days and can guarantee I’ll be back.

We are blessed to have
Ellen Riker on our side!
Washington Days originally began by HTCs in the 1970s, to secure more funding. Many of their services were not billable to insurance, like those for social services and physical therapy. Soon, National Hemophilia Foundation (NHF) and the HTCs joined forces to help advocate for the HTC comprehensive care model and in 1975, successfully secured funding. Now, groups of patients and families with hemophilia come from all states to meet with their representative and senators to speak with one voice about securing funding and preserving care. This year? The largest turnout yet with over 340 people ready to lobby, from nine-year-old Peyton Brush of Texas, who has hemophilia, to, well, people in my age group!

NEHA ready to lobby!
The next speaker, Joanna Gray, told us “You’ll never be alone when you lobby.” I originally thought we had to meet with our reps solo! But we would go as a regional or state group. “And meeting with the staff is more important than meeting with a senator.” I looked at my agenda and we would have seven meetings in seven hours on Capitol Hill!

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!
And Michelle Rice, director of public policy at NHF, stunned us by saying “We have 220 visits scheduled for tomorrow!”

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
On Thursday the weather was sunny and brisk. You can do a lot of running around on Capitol Hill trying to meet with your representatives. We rehearsed how we would all present our two main concerns: Kevin Sorge, executive director of NEHA, would introduce us and outline why we were here: 1) To maintain the $4.9 million level of funding for HTCs from HRSA, and 2) to request co-sponsorship of H.R. 460, the Patient Access to Treatments Act, and more superficially, to keep hemophilia drugs from becoming tier 4 reimbursable. As tier 4 drugs, the co-pays would be outrageously high, with patients required to pay 25-33% of total costs, truly unaffordable for anyone. This could lead to abandoning prophylaxis and not allowing out children to do sports or travel.

NEHA meeting with Jim Gordon of rep. Stephen Lynch
Nothing stops these guys from lobbying!
Then I would give a quick rundown on Hemophilia 101. Showing my photos of children overseas with swollen joints or head bleeds really drove home how treacherous hemophilia can be. Then, Greg Price, who has hemophilia, would discuss HTCs, and share his own personal perspective on them. Diane Lima, mother of Jonathan and Andy, would share her experiences with insurance costs and the boys’ quality of life. She created very effective laminated cards on each boy that were teaching tools for the high cost of care. She left behind copies for each representative. Ian Muir, another person with hemophilia, also shared his personal story. Finally Kim DeAngelis, Ph.D., board member, summarized beautifully the main points and what we needed from the representative. It all went like clockwork!

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
It was an intense and long day. Lunch in the Capitol was hectic, crowded and noisy. Decorated generals huddled in talks next to chatty tables of young people. Our feet were tired and eyesight blurry by the time we were done. We had a wonderful dinner, more speakers and then back to the bar to complete evaluations and follow up items. Thank you emails or notes are vital. I would be sending out copies of my book Raising a Child With Hemophilia to each person we visited.
Laurie Kelley with NHF CEO Val Bias

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.

NEHA meetings Joe Kennedy III

To see all the photos, go to

Great job NHF!

1 comment :

Anonymous said...

Are hemophilila people talking about whether we should support HR 676 : expanded and imoroved Medicare for all? says it would save a lot of money, cover all Americans, cover everyone the same way (including members of Congress), cover reasonable and necessary: medical, dental, eyeglasses, & mental.