As Advocacy Chairperson for my local chapter (Tennessee), they helped give insight on how to effectively communicate with legislators and, ultimately, how to secure co-sponsors for "The IBD Research and Awareness Act." They also provided detailed background on the bill and explained exactly how this grassroots movement began. I'll try to sum up my call based on the notes I took during our conversation.
Amy works in New York for the CCFA and helped spearhead the advocacy movement. Gavin is a CCFA legislator consultant in Washington D.C. and has many years of experience working with politicians. Steve is the president of the Georgia chapter of the CCFA and is our mentor in this advocacy process.
Basically, as advocates, our main goal right now is to help pass the IBD bill that is before Congress. Time is off the essence as a new Congress will assemble next November.
The great thing about this bill is that it is a bi-partisan piece of legislation. How is that possible you say? Republicans, Democrats and Independents can't seem to agree on anything (I say that tongue in cheek). It is possible because the bill was introduced by legislators who are affected by IBD. Again, this disease doesn't discriminate.
For instance, Senator Harry Reid's (D-NV) wife has ulcerative colitis. Senator Thad Cochran (R-MS) has a college friend with UC. Congressman Dennis Kucinich (D-OH) has Crohn's disease.
They have a personal connection to this disease and want to pass the bill as much as we do.Now, our job is to tell our personal stories face-to-face with our local legislators. All 3 were confident that if we were to sit down, explain our background with IBD and then specifically ask for co-sponsorship, senators and congressmen/women would sign on.
The part that I needed help with is setting up meetings. However, Gavin explained that I (or anyone interested) should call, ask for a formal meeting, submit a written request and be persistent...not pushy...just persistent. He indicated that it may take several phone calls, but a meeting would eventually come to fruition. Plus, make yourself available around their schedule. If the best time is on a Saturday at 1pm, jump at the first chance for a meeting!
The bill itself is brief and easy to explain:
1. Expand research at the National Institute of Health.
2. Establish an awareness program at the Center for Disease Control (CDC).
(I didn't realize this, but there are many disease-specific awareness programs at the CDC, but there isn't one for "inflammatory bowel disease" (IBD)!)
3. Establish a pediatric registry at the CDC in order to help advance pediatric research.
4. Authorize for five (5) years an IBD program at the CDC. This will make sure sure it is formally funded and authorized by Congress.
Ultimately, it comes down to more awareness and research.
I encourage everyone to keep calling, writing and emailing your local legislators but, if you have the time, consider meeting with them one-on-one and put a personalized story with this disease.
Network with friends and co-workers to find out who might have contacts with a senator or congressman/woman.
Explain, in detail, how many days you've spent in the hospital, the vast amount of pills you have to take on a daily basis or the surgery you had to go through. Describe the pain, frustration, anxiety, depression and fear of living with a chronic disease.
We will get this bill passed into law! I am extremely motivated to do my part and hope I can inspire others to make their voice be heard.
If you need help or if you have questions...PLEASE contact me at any time.
Thank you to all who have helped thus far!
Cheers,
Brent Hinson
Advocacy Chair - TN Chapter - CCFA
ccfaadvocacy@gmail.com
TN Advocacy on Twitter
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