I 
111TH CONGRESS 
1ST SESSION H. R. 2275 
To support research and public awareness activities with respect to 
inflammatory bowel disease, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 6, 2009 
Mr. JACKSON of Illinois (for himself, Mr. CRENSHAW, and Mr. CASTLE) intro-
duced the following bill; which was referred to the Committee on Energy 
and Commerce 
A BILL 
To support research and public awareness activities with 
respect to inflammatory bowel disease, and for other 
purposes. 
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 and Awareness Act’’. 
SEC. 2. FINDINGS. 
The Congress finds as follows: 
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(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; arthritic joint pain, 
inflammation of the eye, and rectal bleeding. There 
is no known cause of inflammatory bowel disease, 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 
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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 are estimated at more 
than $2,000,000,000. 
(8) The average time from presentation of 
symptoms to diagnosis in children is three years. 
(9) Delayed diagnosis of inflammatory bowel 
disease frequently results in more-active disease as-
sociated with increased morbidity and complications. 
(10) The National Institutes of Health National 
Commission on Digestive Diseases issued com-
prehensive research goals related to inflammatory 
bowel disease in its April 2009 report to Congress 
and the American public entitled ‘‘Opportunities and 
Challenges in Digestive Diseases Research: Rec-
ommendations of the National Commission on Di-
gestive Diseases’’. 
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SEC. 3. ENHANCING CDC’S PUBLIC HEALTH ACTIVITIES ON 
INFLAMMATORY BOWEL DISEASE. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 320A the following: 
‘‘SEC. 320B. INFLAMMATORY BOWEL DISEASE EPIDEMI-
OLOGY RESEARCH AND PEDIATRIC PATIENT 
REGISTRY PROGRAM. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, shall conduct, support, and expand epidemiology 
research on inflammatory bowel disease in both pediatric 
and adult populations and establish a registry of pediatric 
IBD patients. 
‘‘(b) COOPERATIVE AGREEMENT.—In carrying out 
subsection (a), the Secretary shall enter into a cooperative 
agreement with a nonprofit organization with expertise 
and experience in conducting inflammatory bowel disease 
research to develop and administer the epidemiology re-
search and registry program, including— 
‘‘(1) expansion of existing IBD epidemiology 
program research activities within the National Cen-
ter for Chronic Disease Prevention and Health Pro-
motion; and 
‘‘(2) establishment, within one year of enact-
ment of this section, of a population-based registry 
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of pediatric IBD patients for the purposes of data 
collection, research, and patient services. 
‘‘(c) PEDIATRIC IBD REGISTRY.— 
‘‘(1) FOCUS.—The pediatric IBD registry es-
tablished under this section shall focus on, but not 
be limited to, data collection, storage and analysis 
regarding— 
‘‘(A) the incidence and prevalence of pedi-
atric IBD in the United States; 
‘‘(B) genetic and environmental factors as-
sociated with pediatric IBD; 
‘‘(C) age, race or ethnicity, gender, and 
family history of individuals diagnosed with pe-
diatric IBD; and 
‘‘(D) treatment approaches and outcomes 
in pediatric IBD. 
‘‘(2) ADDITIONAL
REQUIREMENTS.—In estab-
lishing the pediatric IBD registry under this section, 
the Secretary shall— 
‘‘(A) identify, build-upon, and coordinate 
with existing public and private surveillance 
systems related to pediatric IBD; and 
‘‘(B) establish a secure communication 
mechanism within the registry to facilitate pa-
tient contact with researchers studying the envi-
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ronmental and genetic causes of pediatric IBD 
or conducting clinical trials on pediatric IBD. 
‘‘(d) DEFINITION.—In this section, the term ‘IBD’ 
means inflammatory bowel disease. 
‘‘(e) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $3,500,000 for each of the fiscal years 2010 
through 2014. 
‘‘SEC. 320C. INCREASING PUBLIC AWARENESS OF INFLAM-
MATORY BOWEL DISEASE AND IMPROVING 
HEALTH PROFESSIONAL EDUCATION. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, shall award grants to eligible entities for the pur-
pose of increasing awareness of inflammatory bowel dis-
ease among the general public and health care providers. 
‘‘(b) USE OF FUNDS.—The Secretary may not award 
a grant under this section to an eligible entity unless the 
entity agreed to use the grant to develop educational mate-
rials and conduct awareness programs focused on inflam-
matory bowel disease, including with respect to the fol-
lowing subjects: 
‘‘(1) Crohn’s disease and ulcerative colitis and 
their symptoms. 
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‘‘(2) Testing required for appropriate diagnosis 
and the importance of accurate and early diagnosis. 
‘‘(3) Key differences between pediatric and 
adult disease. 
‘‘(4) Specific physical and psychosocial issues 
impacting pediatric patients, including stunted 
growth, malnutrition, delayed puberty, and depres-
sion. 
‘‘(5) Treatment options for both adult and pedi-
atric patients. 
‘‘(6) The importance of identifying aggressive 
disease in children at an early stage in order to im-
plement the most effective treatment protocol. 
‘‘(7) Complications of inflammatory bowel dis-
ease and related secondary conditions, including 
colorectal cancer. 
‘‘(8) Federal and private information resources 
for patients and physicians. 
‘‘(9) Incidence and prevalence data on pediatric 
and adult inflammatory bowel disease. 
‘‘(c) REPORT TO CONGRESS.—Not later than Sep-
tember 30, 2010, the Secretary shall report to the Com-
mittee on Energy and Commerce of the House of Rep-
resentatives, the Committee on Health, Education, Labor, 
and Pensions of the Senate, and the Committees on Ap-
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propriations of the House of Representatives and the Sen-
ate regarding the status of activities under this section. 
‘‘(d) ELIGIBLE ENTITY.—To carry out this section, 
the term ‘eligible entity’ means a nonprofit patient or pro-
fessional organization with experience in serving adults 
and children with inflammatory bowel disease. 
‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—For the 
purpose of carrying out this section, there is authorized 
to be appropriated $2,000,000 for each of fiscal years 
2010 through 2014.’’. 
SEC. 4. SENSE OF CONGRESS ON EXPANSION OF BIO-
MEDICAL 
RESEARCH 
ON 
INFLAMMATORY 
BOWEL DISEASE. 
It is the sense of the Congress that— 
(1) the Secretary, acting through the Director 
of the National Institutes of Health and the Director 
of the National Institute of Diabetes and Digestive 
and Kidney Diseases (in this section referred to as 
the ‘‘Institute’’) should aggressively support basic, 
translational, and clinical research designed to meet 
the research goals for inflammatory bowel disease 
(in this section referred to as ‘‘IBD’’) included in 
the National Institutes of Health National Commis-
sion on Digestive Diseases report entitled ‘‘Opportu-
nities and Challenges in Digestive Diseases Re-
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search: Recommendations of the National Commis-
sion on Digestive Diseases’’, including by— 
(A) establishing an objective basis for de-
termining clinical diagnosis, detailed phenotype, 
and disease activity in IBD; 
(B) developing an individualized approach 
to IBD risk evaluation and management based 
on genetic susceptibility; 
(C) modulating the intestinal microflora to 
prevent or control IBD; 
(D) effectively modulating the mucosal im-
mune system to prevent or ameliorate IBD; 
(E) sustaining the health of the mucosal 
surface; 
(F) promoting regeneration and repair of 
injury in IBD; 
(G) providing effective tools for clinical 
evaluation and intervention in IBD; and 
(H) ameliorating or preventing adverse ef-
fects of IBD on growth and development in 
children and adolescents; 
(2) the Institute should support the training of 
qualified health professionals in biomedical research 
focused on IBD, including pediatric investigators; 
and 
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(3) the Institute should continue its strong col-
laboration with medical and patient organizations 
concerned with IBD and seek opportunities to pro-
mote research identified in the scientific agendas 
‘‘Challenges in Inflammatory Bowel Disease Re-
search’’ (Crohn’s and Colitis Foundation of Amer-
ica) and ‘‘Chronic Inflammatory Bowel Disease’’ 
(North American Society for Pediatric Gastro-
enterology, Hepatology and Nutrition). 
SEC. 5. BIENNIAL REPORTS. 
Section 403(a)(5) of the Public Health Service Act 
(42 U.S.C. 283(a)(5)) is amended— 
(1) by redesignating subparagraph (L) as sub-
paragraph (M); and 
(2) by inserting after subparagraph (K) the fol-
lowing: 
‘‘(L) Inflammatory bowel disease.’’. 
Æ 
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