I 
109TH CONGRESS 
1ST SESSION H. R. 3616 
To expand the research, prevention, and awareness activities of the National 
Institute of Diabetes and Digestive and Kidney Diseases and the Centers 
for Disease Control and Prevention with respect to inflammatory bowel 
disease. 
IN THE HOUSE OF REPRESENTATIVES 
JULY 29, 2005 
Mrs. KELLY (for herself, Mr. CARDIN, Mr. JACKSON of Illinois, Ms. 
SCHAKOWSKY, Mr. WEINER, Mr. MCNULTY, Mr. MORAN of Virginia, Mr. 
HINCHEY, Ms. KAPTUR, Mr. TAYLOR of Mississippi, Ms. JACKSON-LEE 
of Texas, Mr. BERRY, and Mr. CUNNINGHAM) introduced the following 
bill; which was referred to the Committee on Energy and Commerce 
A BILL 
To expand the research, prevention, and awareness activities 
of the National Institute of Diabetes and Digestive and 
Kidney Diseases and the Centers for Disease Control 
and Prevention with respect to inflammatory bowel dis-
ease. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Inflammatory Bowel 
Disease Research Act’’.
SEC. 2. FINDINGS. 
The Congress finds as follows: 
(1) Crohn’s disease and ulcerative colitis are se-
rious inflammatory diseases of the gastrointestinal 
tract. 
(2) Crohn’s disease may occur in any section of 
the gastrointestinal tract but is predominately found 
in the lower part of the small intestine and the large 
intestine. Ulcerative colitis is characterized by in-
flammation and ulceration of the innermost lining of 
the colon. Complete removal of the colon in patients 
with ulcerative colitis can potentially alleviate and 
cure symptoms. 
(3) Because Crohn’s disease and ulcerative coli-
tis behave similarly, they are collectively known as 
inflammatory bowel disease. Both diseases present a 
variety of symptoms, including severe diarrhea; ab-
dominal pain with cramps; fever; and rectal bleeding. 
There is no known cause of inflammatory bowel dis-
ease, or medical cure. 
(4) It is estimated that up to 1,400,000 people 
in the United States suffer from inflammatory bowel 
disease, 30 percent of whom are diagnosed during 
their childhood years. 
(5) Children with inflammatory bowel disease 
miss school activities because of bloody diarrhea and
abdominal pain, and many adults who had onset of 
inflammatory bowel disease as children had delayed 
puberty and impaired growth and have never 
reached their full genetic growth potential. 
(6) Inflammatory bowel disease patients are at 
high risk for developing colorectal cancer. 
(7) The total annual medical costs for inflam-
matory bowel disease patients is estimated at more 
than $2,000,000,000. 
SEC. 3. NATIONAL INSTITUTE OF DIABETES AND DIGES-
TIVE AND KIDNEY DISEASES; INFLAMMATORY 
BOWEL DISEASE RESEARCH EXPANSION. 
(a) IN GENERAL.—The Director of the National In-
stitute of Diabetes and Digestive and Kidney Diseases 
shall expand, intensify, and coordinate the activities of the 
Institute with respect to research on inflammatory bowel 
disease, with particular emphasis on the following areas: 
(1) Genetic research on susceptibility for in-
flammatory bowel disease, including the interaction 
of genetic and environmental factors in the develop-
ment of the disease. 
(2) Research targeted to increase knowledge 
about the causes and complications of inflammatory 
bowel disease in children.
(3) Animal model research on inflammatory 
bowel disease, including genetics in animals. 
(4) Clinical inflammatory bowel disease re-
search, including clinical studies and treatment 
trials. 
(5) Expansion of the Institute’s Inflammatory 
Bowel Disease Centers program with a focus on pe-
diatric research. 
(6) Other research initiatives identified by the 
scientific document entitled ‘‘Challenges in Inflam-
matory Bowel Disease’’ and the research agenda for 
pediatric gastroenterology, hepatology and nutrition 
entitled ‘‘Chronic Inflammatory Bowel Disease’’. 
(b) AUTHORIZATION OF APPROPRIATIONS.— 
(1) IN GENERAL.—For the purpose of carrying 
out subsection (a), there are authorized to be appro-
priated 
$75,000,000 
for 
fiscal 
year 
2006, 
$85,000,000 for fiscal year 2007, and $100,000,000 
for fiscal year 2008. 
(2) RESERVATION.—Of the amounts authorized 
to be appropriated under paragraph (1), not more 
than 20 percent shall be reserved for the training of 
qualified health professionals in biomedical research 
focused on inflammatory bowel disease, including pe-
diatric investigators.
SEC. 4. CENTERS FOR DISEASE CONTROL AND PREVEN-
TION; NATIONAL INFLAMMATORY BOWEL DIS-
EASE ACTION PLAN. 
(a) IN GENERAL.— 
(1) PREPARATION OF PLAN.—The Director of 
the Centers for Disease Control and Prevention, in 
consultation with the inflammatory bowel disease 
community, shall prepare a comprehensive plan to 
address the burden of inflammatory bowel disease in 
both adult and pediatric populations (which plan 
shall be designated by the Director as the ‘‘National 
Inflammatory Bowel Disease Action Plan’’). 
(2) REPORT TO CONGRESS.— Not later than 12 
months after the date of the enactment of this Act, 
the Director of the Centers for Disease Control and 
Prevention shall submit the Plan referred to in para-
graph (1) to the Committee on Energy and Com-
merce and the Committee on Appropriations in the 
House of Representatives and to the Committee on 
Health, Education, Labor and Pensions and the 
Committee on Appropriations in the Senate. 
(b) CONTENT.— 
(1) IN GENERAL.—The National Inflammatory 
Bowel Disease Action Plan shall address strategies 
for determining the true prevalence of inflammatory 
bowel disease in the United States, and the unique
demographic characteristics of the patient commu-
nity through the expansion of appropriate epidemio-
logical activities. 
(2) CERTAIN REQUIREMENTS.— The Plan re-
ferred to in paragraph (1) shall— 
(A) focus on strategies for increasing 
awareness about inflammatory bowel disease 
within the general public and the health care 
community in order to facilitate more timely 
and accurate diagnoses; and 
(B) address mechanisms designed to pre-
vent the progression of the disease and the de-
velopment of complications, such as colorectal 
cancer, and other strategies and activities as 
deemed appropriate. 
(c) AUTHORIZATION OF APPROPRIATIONS.—For the 
purpose of carrying out this section, there is authorized 
to be appropriated $750,000 for fiscal year 2006. 
Æ