Your Turn: Support H.R. 2239
After I posted about my experience at the Digestive Health Alliance Advocacy Day, I was inundated by heartfelt “thank yous” for representing the GP community on Capitol Hill. (It was an honor, by the way.)
Well, now it’s your turn!
The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 was introduced as H.R. 2239 on June 16th. Before we go any further, take a second and think about that. It’s the first ever bill focused on functional gastrointestinal and motility disorders, which includes gastroparesis. That’s a big step in the right direction. Yay for us!
Here’s what you need to know about H.R. 2239: it’s a bipartisan bill that seeks to bolster research, increase awareness, and improve the development of innovative treatment options for FGIMDs, such as gastroparesis. Specifically, it calls on the National Institutes of Health to implement the research plan created by the National Commission on Digestive Disease, establish a Centers of Excellence program, coordinate research activities with the Department of Defense, and work with the FDA to improve their review, approval and oversight of treatments for these conditions (like Enterra Therapy).
Remember what I said last week about the importance of federal funding? The major roadblock to finding a cure for gastroparesis is not lack of ability…it’s lack of funding. What’s more, adequate funding will be essential in order to translate whatever scientific discoveries are made into practical applications that will affect the treatment that you and I receive. Currently, FGIMDs as a group, which affect about 15% of the population, are disproportionately underfunded and that’s causing established researchers to leave the field and discouraging new researchers from entering it.
It doesn’t have to be that way. Funding is political. It has nothing to do with the prevalence or severity of a condition. It comes down to you and me educating our lawmakers about our needs as GPers and asking them to do something about it. Check out the chart below. It’s not a coincidence that Crohn’s Disease and Autism have some of the most active and well-coordinated advocates out there.
Now, with that in mind…
In order for H.R. 2239 to pass, it must be sponsored by 218 members of Congress. This is where you come in. The only way for your congressperson to understand the importance of this bill is for you to tell them. Each of us must contact our local representative and ask them to support H.R. 2239.
Here’s what you do:
- Visit www.Congress.org to find the contact information for your local representative.
- Call their Washington, DC office and ask for the staff members who handles health issues (you’ll probably get voicemail — that’s okay, leave a message).
- Identify yourself as a constituent. Provide some very brief background of your interest in this issue. Ask that your congressman or congresswoman “become a cosponsor of H.R. 2239 by contacting Amy Bos in the office of Congressman James Sensenbrenner, Jr.”
OR
- Send an email, providing the same information and making the same request.
Don’t forget to ask your family members speak up, too! My parents and my brother have each contacted their local representatives expressing their own interest in seeing this bill passed.
Together we can effect change and bring about better treatment options — and eventually a cure! — for gastroparesis. It won’t happen overnight but as I tell my clients, even baby steps constitute forward progress.
So go on, make your call or send your email — and then let me know about it so I can thank you!
If you would like to become even more involved in the coordinated congressional outreach on this issue, please contact IFFGD’s Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org.
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2 Responses to “Your Turn: Support H.R. 2239”
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I have called, and posted to facebook, I have a lot of friends who seem to be calling, and I just put it up about 20 minutes ago, thank you so much for this info!
Just to give you some background info:
My mom was diagnosed with gastroparesis about a year or so ago, she got it after a doctor nicked a nerve in her stomach after a surgery. The surgeon never informed my mother on this, and she had to suffer for about 4 months with no information on what was happening or why. I spent my summer taking care of her, she was on home-care, she couldn’t eat anything and had an IV in her for that 4 month time. I would sit with her, either at home or the hospital, trying to make sure that she was as comfortable as possible. after the summer was over, I had to return back to university. While I was at school, her condition got worse, by the next time I saw her, the full time spand, from when she first started the vomiting and nausea, she’d lost over 100 lbs in about 8 moths. She was in the hospital for about a moth, just trying to recover from what was happening, I went back to school in August, and she found out that she has gastroparesis around January or February. She eventually got the Enterra gastric pacemaker. And it went very well for the first few months, until early may, now for the last few months, she has been going to the hospital once a week, about every week until now (June 29 2011) Its extremely stressful on her mentally and physically, I’m trying to be strong for and with her, but its just a struggle, it has definately been a better summer than last, but I just hope that this extra funding, if, no when the bill is passed will help her and others with this, have some kind of peace of mind.
Thank you so much for all of your hard work on this site and the other things that you do. Stay strong, and it has to get better!
Thanks,
Elliott
[...] is an Action Alert from the Digestive Health Alliance regarding H.R. 2239. For those of you have haven’t yet contacted your representative in Congress, you’ll [...]