DDNC Wrap-Up (Better Late Than Never!)
I can’t believe I still haven’t shared the details of the Digestive Disease National Coalition Public Policy Forum that I attended in March. Initially, I intended to take a week to digest and absorb the experience (horrible pun) before writing about it. Somehow one week turned into two months. But better late than never, right?
In case you missed my initial post, I signed up to attend the 20th annual DDNC Public Policy Forum back in February. I really wasn’t sure what to expect but it turned out to be a really rewarding experience. The two-day event, held March 7-8 in Washington, D.C., brought together digestive disease patients, advocates, and medical professionals to spread awareness on Capitol Hill and lobby for support and funding. The gastroparesis community was well represented, with about a dozen of us (both patients and their family members) in attendance.
I flew in early on Sunday morning and met up with other members of G-PACT (Gastroparesis Patient Association for Cures & Treatments) before the conference started. They were working on a secret project, which I got to be a part of. (Hopefully I’ll be able to share the details of that soon!) Believe it or not, it was the first time I’d ever been in the same room with others with gastroparesis.
Over the next two days, it became increasingly apparent that while we all suffer from the same disease, the way each of us experiences that disease — in terms of symptoms, lifestyle, dietary tolerances, and attitude — is really quite different. It reinforced my belief that while all cases have their similarities, each gastroparesis patient is unique and that’s why the one-size-fits-all recommendations often don’t work.
In terms of the conference itself, it was educational, inspirational, and empowering. The education and inspiration came on Sunday, when we met as a large group to hear several experts discuss a variety of digestive disease topics. Learning about the recent advancements in digestive disease research was heartening but even better was seeing the passion and determination that exists to give digestive disease patients a better way of life.
That being said, I couldn’t help but feel that the gastroparesis group got the short end of the stick in some ways. While a lot of attention was paid to Celiac Disease and IBD, for example, there was nary a mention of gastroparesis (even though GP affects millions more people). For the most part, I’m guessing this is because there are clear-cut ways to define, diagnose and treat these other digestive conditions, something that can’t be said for gastroparesis due to a lack of research and understanding of the disease. And that brings me to the real purpose of the conference: the House and Senate visits.
On Monday morning we were divided into small groups based on our political districts and sent over to Capitol Hill to meet with Senators and Congresspeople (…or their staff members, at least). Because some people didn’t show up and there were so many New Yorkers in attendance, my group ended up merging with a group from Washington state. Turned out all of us had some kind of personal interest in gastroparesis so we were really able to focus on that in each of our meetings.
We spent the morning at the Senate office buildings, talking with aides from the offices of Senator Kay Bailey Hutchinson of Texas and Maria Cantwell and Patty Murray, both of Washington. We stopped into NY Senator Kirsten Gillibrand’s office (a fellow Dartmouth College alumna), but she’d already seen two groups so we moved on.
Side note: That morning the officers of G-PACT met with Senator John McCain’s office in response to his unfortunate remarks about motility research. They presented his staffers with information and a petition signed by patients and other politicians.
After lunch, which sadly didn’t take the needs of gastroparesis patients into account, we made our way over to the House of Representatives buildings to meet with our local congresspeople. We talked with the offices of Representatives Paul Tonko, Michael Arcuri, Eliot Engel, and Chris Lee (my local rep).
In addition to raising awareness of gastroparesis, the main purpose of each visit was to request that the politicians support additional funding for the NIDDK and gastric motility research, in particular. Last year the NIDDK received stimulus funding for a variety of digestive disease research projects. However, that money will run out in 2010 and without additional funding much of the research will have to be suspended. As those of us with gastroparesis are aware, additional research is vital.
Will our visits make a difference? I’m really not sure. Most of the aides took notes, asked questions and appeared to be generally interested in what we had to say. Some seemed bored. One barely let us sit down before shooing us out the door. Either way, it felt good.
Thelma Theil, this year’s DDNC Lifetime Achievement Award Winner, summed it up nicely when she said, “While at times you may have wondered, ‘Why me?’ you didn’t just sit at home and have a pity party. You got off your duff and you’re making a difference!”
By the time I got home on Monday night, I was so physically and mentally exhausted that I did sit on duff for a few days. But it was definitely worth it and I’m sure I’ll be back next year. Maybe I’ll see some of you there!
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3 Responses to “DDNC Wrap-Up (Better Late Than Never!)”
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I was diagnosed with GP in february, had a terrible experience with reglan and had botox last month and it is definatley helping. While I was reading your post I couldn’t help wondering: how have you been able to eat while travelling? Would you do post on how you and others deal with eating away from home. thanks
Hi, there. I’m sorry that you’re dealing with GP, but I’m glad to hear that the Botox is helping you!
Thanks for the suggestion. Managing the GP while traveling definitely takes some planning. I’d be happy to post my tips and suggestions — look for it coming soon!
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