DHA Advocate Tanjie Kling sat down to speak with fellow advocate, Mollee Sullivan, about her experience at the 2011 DHA Advocacy Day. Below is an excerpt from their interview.

Tanjie, 43, is an urban planner for the city of Huntsville, Alabama. For more than 20 years, she’s worked primarily in transportation planning and economic development. The youngest of four children, Tanjie enjoys running and spending time with her husband, Bill Kling, Jr.

On June 14 and 15 of this year, Tanjie went to Capitol Hill for Digestive Health Advocacy Day, hosted by the Digestive Health Alliance (DHA), the grassroots arm of the International Foundation for Functional Gastrointestinal Disorders (IFFGD).The annual event provides the opportunity to take action for the digestive health community by personally meeting with congressional decision makers. Tanjie got to tell her own story and help educate about research and treatment needs.

Tanjie, when were you diagnosed with gastroparesis?
I became sick in 2005. It was determined that my gallbladder was not functioning correctly. I had it removed, and shortly after had another motility disorder — Sphincter of Oddi Dysfunction (SOD). I honestly think I had multiple upper GI motility disorders going on at the same time, and it just took a while to get everything sorted out. I was finally diagnosed with GP in 2007. My symptoms mostly consisted of nausea, feeling like I had eaten a shoe, and pain in my right rib area that has persisted after my gallbladder surgery and SOD diagnosis. I had a biliary sphincterotomy in 2006 to open my bile duct. That provided some relief.

Let’s talk about Advocacy Day. Do you feel like your background in government helped to prepare you?
Yes, I believe so. I enjoy presenting ideas, and my work with the City of Huntsville requires that I travel to Washington D.C. some.

What was it like talking to members of Congress?
We actually talked mostly to staff members, and they were very interested in what we had to say. All of the advocates were broken into teams of four. There were typically three patients and one IFFGD or Health and Medicine Counsel (HMC) staff member, in case there were any detailed questions concerning the legislation that we patients could not answer. We shared our personal stories and highlighted the need for research, and we split up our legislative agenda among ourselves so that everything was covered. Each meeting took about 15 minutes, so we had to quickly cover our information, answer any questions, and make our way to the next meeting.

Wow. What would you say is the biggest thing you took home from the event?
It was a positive experience to meet others with functional GI and motility issues, and to work side by side with them to educate legislators and their staff about our plight and need for research funding.

So do you think the IFFGD and DHA are making good progress for those with GP and other digestive diseases?
Yes, I do. While we were there, H.R. 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, was introduced by Congressman Jim Sensenbrenner of Wisconsin. We are currently seeking cosponsors in the House for this revenue-neutral bill. The positive thing about this bill is that it will allow the National Institutes of Health (NIH) to shift funds that it would already have in its budget to functional GI and motility research. That should be agreeable to everyone.

I know, that’s so exciting! Do you think your Representative in Alabama might cosponsor?
At this point, I am uncertain. I have contacted his office, and we requested everyone we met with during Advocacy Day to cosponsor the legislation. Advocates learned that the annual research funds spent for functional GI disorders is roughly $20 million, while other disorders receive upwards of $300 million annually. Only about $3 million is spent on gastroparesis research. That is pretty disheartening.

Yeah, it is, considering that motility disorders affect about 15 percent of the American population, and some 5 million have gastroparesis.
That is why it is so important for patients who have functional GI disorders and their family members to get involved. I am even going to contact my GI doctor in town to let him know about this bill, in hopes that the doctors in his practice will make phone calls to their Congressman.

That’s a great idea. With the help of the staff from the IFFGD, I wrote a letter to Representative Eric Cantor of Virginia, so I hope he’ll consider cosponsoring the bill. Would you recommend that other readers do the same in their states?
Most certainly! Some persons may not have been able to make the trip to D.C. for Advocacy Day, and others may not feel comfortable meeting with their Congressman. The IFFGD staff would be happy to provide readers with a draft letter that they can enhance with their story.

Yeah, it was super easy for me. So is there anything else you’d like to say to other people out there who have GP?
Please get involved. If you do not want to write a letter, you can make a phone call to ask your Congressman to cosponsor this legislation. More than likely, you can leave a voicemail urging support. There are so many ways to get involved with the IFFGD. Everyone has their own unique way they can contribute, and together we can make a difference. Remember, we are not only advocating for ourselves, but for those who are too sick to advocate on their own behalf!

So true. Thank you, Tanjie! If you would like to get involved, please contact the DHA at dha@iffgd.org.