Crohn’s, Colitis, and a Couple of Congressmen

The other day I wrote about a new Congressional Crohn’s and Colitis Caucus that was formed to focus on inflammatory bowel disease (IBD). This news struck me in several ways. On one hand, it’s hard to imagine that anyone would oppose legislative efforts that stand to benefit people with chronic illnesses. On the other, I can understand the difficulties a politician might face in that pursuit. There is most certainly a bewildering variety of medical conditions afflicting people in any congressional district. With so many needs to address, how would a representative choose which battles are most important to fight?

I have spent a fair amount of time in legislators’ offices sharing the perspective of one living with IBD in the hope that it will help them make informed choices when faced with shaping the future of our disease and others. The most common hesitation we hear from lawmakers is that supporting disease-specific legislation and funding appears to be too specialized an interest. We point out that other inflammatory and autoimmune conditions share many traits, medications, and treatments with Crohn’s and colitis. As a result, research for one commonly benefits the others. Plus, when we tell people about our Crohn’s or colitis diagnosis, the listeners’ reactions almost always reveal other connections they have to IBD. And certainly illness affects more than just the patients—family, friends, coworkers and others are impacted. So the scope of IBD legislation isn’t restricted to a mere subset of the population; rather it likely benefits us all in some way.

Through political advocacy we can educate our leaders, help them understand what we go through and the support we need, and encourage them to enact change that helps us all. I have profound respect for all who work to this end, both our leaders and those whose efforts keep them informed.

Several such legislators come to mind. Congressmen Ander Crenshaw and Jesse Jackson Jr. joined forces to create the new Crohn’s & Colitis Caucus in Congress this year, and had introduced the IBD Research and Awareness Act in the previous congress. Senator Harry Reid had also done similar work with a parallel bill in the U.S. Senate. All three of these leaders are working across party lines on our behalf. In 2009 Ander Crenshaw and I talked after he addressed a Crohn’s & Colitis Foundation (CCFA) event in Washington. At that opening reception for IBD Day on the Hill, he spoke eloquently about the need for advancing medical research, and he shared with me a personal connection—that his daughter suffers from Crohn’s disease. The following year, I met Jesse Jackson Jr. when he spoke at the same event, pledging his continued support. He too has a personal connection to IBD, as a lead staffer in his office is a Crohn’s patient.

The day after meeting Congressman Jackson, my Capitol Hill experience concluded with an interesting twist. After our closing meetings, several participants and I left the congressional office building and headed toward the Capitol. Behind us, a car came out of the House parking lot and stopped to wait as we crossed the street. I heard a honk and turned around to see a Toyota Prius with a hand waving at us out the driver’s window. Just then, Jesse Jackson Jr. stuck his head out, still waving his arm with a thumbs up, and hollered “Go IBD Day!”

I was gratified by this in several ways. Certainly for the first time in my life I felt like an elected leader was truly acting based on my influence… and not merely because a driver must always do this for a pedestrian in a crosswalk. More importantly, this was a nine-term US Congressman, and he was excited to see us. It indicated to me how serious he really is about supporting the cause. To realize that he remembered us from the night before, and felt compelled to cheer for us, touched my heart. It renewed in me the faith that there are leaders who do listen, who do care, and who do take action and speak out on our behalf. And they can also step in as cheerleaders and caretakers when we need them to. Bravo.