108th Congress

“Assessing Digestive Disease Research and Treatment Opportunities”—Hearing before the House Energy and Commerce Subcommittee on Health (Representative Mike Bilirakis [R-OH], Chairman)

July 8, 2004

Witnesses:

• Dr. Allen Spiegel, Director of NIDDK
• Rodger DeRose, President and CEO, Crohn’s and Colitis Foundations of America (CCFA)
• Adam Carron, ulcerative colitis patient
• Dr. David Peura, on behalf of the Digestive Disease National Coalition

Members of the Subcommittee present included Representatives Michael Bilirakis (R- FL), Chairman; Sherrod Brown (D-OH), Ranking; Steve Buyer (R-IN); Lois Capps (D-CA); Frank Pallone (D-NJ); Bobby Rush; (D-VA); Joe Barton (R-TX); Fred Upton (R-MI); although not a member of the Subcommittee, Representative Sue Kelly (R-NY) joined her colleagues for the hearing. The Chairman led off by noting the significant increase in cases of inflammatory bowel disease (IBD), twice as many as thirty years ago. He emphasized his commitment to reauthorize the NIH, and to implement the Director’s roadmap for research. Chairman Bilirakis also stated there is a need to have greater transparency in getting the benefits of research to the public.

Dr. Allen Spiegel provided background on the burden of digestive disease, and the amount of research dollars devoted to the diseases from NIH. He then detailed new discoveries in IBD research, and how those discoveries are being translated into clinical benefits for patients. Finally, Dr. Spiegel highlighted the role patient support groups, like the CCFA, have in assisting in the planning and program development at NIDDK.

Mr. DeRose provided a brief background on CCFA and its role in (1) funding preliminary research, (2) helping to develop newer therapies, and (3) providing patient education and support organizations for individuals with Crohn’s and colitis. Of particular note was his testimony pertaining to the CDC and its purported failure to follow through on funding an epidemiology study to determine the prevalence of Crohn’s or ulcerative colitis. CDC was not present at the hearing. Adam Carron, an 18 year old with ulcerative colitis, offered his personal story to the Subcommittee. Finally, Dr. Peura provided information from a recent Lewin Group report, “The Burden of Gastrointestinal Diseases,” which concluded that a group of 17 digestive diseases accounts for more than $41 billion each year in direct and indirect health costs.

The question and answer session focused almost exclusively on the role of Congress vis a vis priority setting. Specifically, should Congress make funding decisions on a disease by disease basis, and/or, is priority setting best left to NIH? Dr. Spiegel noted that science is very complex, that there is significant interrelations between various diseases, and that it is not possible to determine where or when breakthroughs might occur. He further emphasized that it was vital for priority setting to be as transparent as possible. For these reasons, the prioritizing was best left to those intimately involved with the science.

As a clinician, Dr. Peura commented that he sees many patients with many different conditions, and that dollars spent on research in one area frequently cross over into other conditions.

Representative Kelly, the sponsor of the IBD Act (H.R. 290), pointed out that Congress funds research on specific diseases all the time, citing the recent stroke bill, HIV, and cancer as examples.

The Chairman closed out the hearing by alerting those present to his strong desire to move the IBD bill later this year.