DDNC 2009:

On March 8 & 9, six members of G-PACT went to Washington D.C. to join in the Digestive Disease National Coalition’s (DDNC) annual Public Policy Forum. The DDNC, established over 30 years ago, is a coalition of digestive disease organizations committed to advocating for public health initiatives broadly affecting the digestive disease community. It currently represents over 30 patient, health professional and biotechnology organizations. G-PACT became a member this year. The DDNC’s summary of that event has already been forwarded to you. We wanted to report back to you, from G-PACT’s perspective, on the events of those two days.

Our large presence (6 out of 75) at the DDNC gave us a unique opportunity to network with other patients, physicians, researchers, legislators, and lobbyists. We had the opportunity to raise awareness of gastroparesis and chronic intestinal pseudo-obstruction, emphasize the pain and suffering of its victims, discuss the lack of treatment options and lobby for improved funding for, access to and availability of existing and new treatments.

On Sunday, we attended a general informational session outlining the recommendations of the National Commission on Digestive Diseases (NCDD) for research in a variety of digestive diseases (including motility) and about relevant legislative proposals affecting all of us. For those interested, the details of that session are provided on the DDNC web site.

On Monday, G-PACT representatives had the opportunity to travel to Capitol Hill to meet, in small groups, with the legislative assistants for Senators and Congressmen from Pennsylvania, Minnesota, New York, Washington, D.C. and Wyoming. We had an opportunity to tell our personal stories, which the aides clearly found moving and informative, get G-PACT’s name and mission in front of the legislators, leaving them with written G-PACT materials, and advocate for aspects of the NCDD report affecting our members. In particular, we advocated for increased and consistent funding of the National Institute of Health (NIH) in the Omnibus Appropriations Bill. That bill was passed and allocated $30.26 billion for the NIH in 2009, a substantial increase. G-PACT members also advocated for increased funding of and improved organizational efficiency of the FDA and for streamlining the drug approval process to encourage the expedited development and approval of new and effective drugs for the treatment of GP and CIP.

Also encouraged by our group was the development of a public notice and hearing process before drugs like Zelnorm are abruptly withdrawn from market. Finally, members of our group encouraged the passage of the Medicare Home Infusion Therapy Act allowing for payment of infusion supplies for infusion in the home, rather than in a facility. We also discussed the development of improved labeling of food products to assist those on restricted diets.

When we convened at the end of a very, long tiring and invigorating two days, we all agreed that our attendance at DDNC was educational and provided fabulous exposure for G-PACT and our mission and began a dialogue with our legislators on issues important to G-PACT which we hope to continue. We decided that we should attend next year,
hopefully, in even greater numbers, so that we can meet with representatives from all 50 states! Please contact us with any questions!