GFP team member Carinne McKeever Woodworth, PA-C, went before Congress in May to advocate for people with Inflammatory Bowel Disease (IBD). Carinne, who previously shared her story of Crohn’s Disease on our blog, traveled with her husband to speak during “IBD Day On The Hill” organized by the Crohn’s and Colitis Foundation.
“Our goal was to be a voice for the 5 million suffering from Crohn’s and Colitis,” she said.
Advocating for Inflammatory Bowel Disease Patients
Carinne and other North Carolina residents spoke in person with Sen. Thom Tillis (R-NC) and with Sen. Richard Burr’s (R-NC) legislative assistants. Their goal: to encourage legislators to include 'inflammatory bowel diseases' in the Department of Defense Peer-Reviewed Medical Research Program. To obtain the funding, IBD must be listed by Congress under this program.
“This money does not only help find a cure, but to also fund research of other treatment options,” Carinne said. “There are many Crohn’s and Colitis patients like myself who have ‘failed’ all medications currently on the market. Luckily, we learned there are now two drugs in Phase Three of clinical trials. These drugs will be available to the public in 1.5 years. Without funding for research these drugs would have never came into fruition and many would continue to suffer without a viable treatment option.”
Carinne also spoke with legislative staffers for North Carolina House of Representatives, including the teams from the offices of Rep. Alma S. Adams (D-12), Rep. David Price (D-4), and Rep. G.K. Butterfield (D-1). There, she lobbied against step therapy.
“Step therapy is when your provider prescribes a certain medication but your insurance companies makes you try older, cheaper medications before paying for the drug that was originally prescribed,” Carinne explained. “This process could take months before the insurance companies approve the medication. For an Inflammatory Bowel Disease, patient this may be the difference between saving your colon and having it surgically removed. Currently Step Therapy gives all the power to insurance companies — we lobbied to put the decision back into the provider-patient hands.”
Finally, Carinne also argued against a potential law that would discriminate against people with pre-existing conditions, which would affect not just those with Crohn’s, but people with diabetes, cancer, and other health problems. According to an analysis by the Department of Health and Human Services, 50 to 129 million (19 to 50 percent of) non-elderly Americans have some type of pre-existing health condition.
Carinne said she doesn’t know for sure if her efforts made a difference, but she is glad she went.
“At the end of the day I always hope that I have made this world a better place,” Carinne said. “Most days I am not sure if I did any good, but on May 18 I was able to go to bed knowing that I was an advocate for the 5 million suffering from this incurable disease. The experiences I had and the people I met with will always have a special place in my heart.”