|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
|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!
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!”
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.
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!
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.
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.