Digestive Health Advocacy Day: A Call to Action
Bright and early on June 14th, I’ll be flying to Washington, DC to take part in Digestive Health Advocacy Day. Advocacy Day is actually a two-day event orchestrated by the Digestive Health Alliance (DHA), the grassroots arm of the International Foundation for Functional Gastrointestinal Disorders (IFFGD), in which patients meet with members of Congress to share our stories and ask that they take action to address the gaps in treatment and research. What makes Advocacy Day so unique (and exciting!) is that it’s dedicated solely to educating our policymakers about functional gastrointestinal and motility disorders like gastroparesis.
That’s more important than you may realize. Consider this: functional gastrointestinal and motility disorders (FGIMDs) receive $20 million per year in research funding, $3 million of which is specifically for gastroparesis. That may sound pretty good, but let me put it in perspective. Crohn’s Disease receives $150 million in annual funding. That’s fifty times as much money for a condition that affects less than one-third as many people. How can that be? Crohn’s Disease didn’t receive this level of attention and funding by accident. It’s a result of the patient population standing up, making noise, and demanding it. We must do the same.
As individuals whose lives have been directly and forever changed by FGIMDs, Advocacy Day allows us to personally educate our Congress men and women about our unmet needs and ask them to support specific pieces of legislation to help remedy the problems. Specifically, we’ll be calling on our politicians to support the Functional GI and Motility Disorders Research Enhancement Act, which seeks to advance our scientific understanding of FGIMDs and improve treatment options for patients by encouraging and bolstering research. Also on the agenda is the Pediatric Research Consortium Establishment Act aimed at establishing 20 pediatric research centers to be funded at up to $2.5 million annually. This bill passed the house in the last Congress and nearly passed the Senate, so our goal is to encourage our representatives to ensure that the bill passes the next time around.
Lastly, an issue specific to those of us with gastroparesis and quite literally close to my own heart, is that of insurance coverage for the gastric neurostimulator. Despite the FDA having granted the neurostimulator a Humanitarian Device Exemption, GPers are routinely denied coverage by their insurance companies on the grounds that Enterra Therapy is investigational. (You may remember that I went through this myself back in 2009, though the denial was finally overturned after my third appeal.) It just so happens that one of my senators, Charles Schumer, is the chair of the Senate Finance Committee and therefore could play an important role in ensuring that insurance companies are not allowed to continue these practices. I’m very much looking forward to talking with Senator Schumer about how the device has changed my life and how imperative it is that others have the right to the same treatment.
As you can see, this isn’t just about raising awareness of gastroparesis, though that in and of itself is certainly important. Advocacy Day is our chance to get out there and do something to help create a better future for ourselves and the millions of others living with motility disorders. So, with all of that in mind, I truly hope to see many of you in Washington on June 14th!
For more information or to register for Advocacy Day, please visit: http://www.iffgd.org/site/advocacy/2011.
UPDATE: For those who cannot make it to Washington, DC, please check out Mollee’s comment below to learn how you can still participate in the advocacy effort by writing letters to your Congress members.
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4 Responses to “Digestive Health Advocacy Day: A Call to Action”
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Great post, Crystal! You explained what could be confusing and overwhelming in a way that’s easy to understand. I hope many fellow GP patients will respond!
I also wanted to mention — for those who can’t make it to Advocacy Day next month (like me, sadly), you can also help out by writing a letter to your Senator(s). It sounds hard, but it’s not because the IFFGD helps. They write the technical parts, and all you have to do is fill in a paragraph or two telling your story and explaining why the issues the Senate is considering are important to you. I finished my letters to Virginia Senators Warner and Webb last week, and Dean Christiansen, the DHA representative, mailed them for me. You can email Dean at dchristiansen@iffgd.org to get started on your letter.
Thanks so much for adding that info, Mollee! Now everyone can get involved in one way or another!
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