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) introduced 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Inflammatory Bowel 

5 Disease Research and Awareness Act’’. 

6 SEC. 2. FINDINGS. 

7 The Congress finds as follows: 


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1 (1) Crohn’s disease and ulcerative colitis are se2 rious inflammatory diseases of the gastrointestinal 

3 tract. 

4 (2) Crohn’s disease may occur in any section of 

5 the gastrointestinal tract but is predominately found 

6 in the lower part of the small intestine and the large 

7 intestine. Ulcerative colitis is characterized by in8 flammation and ulceration of the innermost lining of 

9 the colon. Complete removal of the colon in patients 

10 with ulcerative colitis can potentially alleviate and 

11 cure symptoms. 

12 (3) Because Crohn’s disease and ulcerative coli13 tis behave similarly, they are collectively known as 

14 inflammatory bowel disease. Both diseases present a 

15 variety of symptoms, including severe diarrhea; ab16 dominal pain with cramps; fever; arthritic joint pain, 

17 inflammation of the eye, and rectal bleeding. There 

18 is no known cause of inflammatory bowel disease, or 

19 medical cure. 

20 (4) It is estimated that up to 1,400,000 people 

21 in the United States suffer from inflammatory bowel 

22 disease, 30 percent of whom are diagnosed during 

23 their childhood years. 

24 (5) Children with inflammatory bowel disease 

25 miss school activities because of bloody diarrhea and 


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1 abdominal pain, and many adults who had onset of 

2 inflammatory bowel disease as children had delayed 

3 puberty and impaired growth and have never 

4 reached their full genetic growth potential. 

5 (6) Inflammatory bowel disease patients are at 

6 high risk for developing colorectal cancer. 

7 (7) The total annual medical costs for inflam8 matory bowel disease patients are estimated at more 

9 than $2,000,000,000. 

10 (8) The average time from presentation of 

11 symptoms to diagnosis in children is three years. 

12 (9) Delayed diagnosis of inflammatory bowel 

13 disease frequently results in more-active disease as14 sociated with increased morbidity and complications. 

15 (10) The National Institutes of Health National 

16 Commission on Digestive Diseases issued com17 prehensive research goals related to inflammatory 

18 bowel disease in its April 2009 report to Congress 

19 and the American public entitled ‘‘Opportunities and 

20 Challenges in Digestive Diseases Research: Rec21 ommendations of the National Commission on Di22 gestive Diseases’’. 


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1 SEC. 3. ENHANCING CDC’S PUBLIC HEALTH ACTIVITIES ON 

2 INFLAMMATORY BOWEL DISEASE. 

3 Part B of title III of the Public Health Service Act 

4 (42 U.S.C. 243 et seq.) is amended by inserting after sec5 tion 320A the following: 

6 ‘‘SEC. 320B. INFLAMMATORY BOWEL DISEASE EPIDEMI7 OLOGY RESEARCH AND PEDIATRIC PATIENT 

8 REGISTRY PROGRAM. 

9 ‘‘(a) IN GENERAL.—The Secretary, acting through 

10 the Director of the Centers for Disease Control and Pre11 vention, shall conduct, support, and expand epidemiology 

12 research on inflammatory bowel disease in both pediatric 

13 and adult populations and establish a registry of pediatric 

14 IBD patients. 

15 ‘‘(b) COOPERATIVE AGREEMENT.—In carrying out 

16 subsection (a), the Secretary shall enter into a cooperative 

17 agreement with a nonprofit organization with expertise 

18 and experience in conducting inflammatory bowel disease 

19 research to develop and administer the epidemiology re20 search and registry program, including— 

21 ‘‘(1) expansion of existing IBD epidemiology 

22 program research activities within the National Cen23 ter for Chronic Disease Prevention and Health Pro24 motion; and 

25 ‘‘(2) establishment, within one year of enact26 ment of this section, of a population-based registry 


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1 of pediatric IBD patients for the purposes of data 

2 collection, research, and patient services. 

3 ‘‘(c) PEDIATRIC IBD REGISTRY.— 

4 ‘‘(1) FOCUS.—The pediatric IBD registry es5 tablished under this section shall focus on, but not 

6 be limited to, data collection, storage and analysis 

7 regarding— 

8 ‘‘(A) the incidence and prevalence of pedi9 atric IBD in the United States; 

10 ‘‘(B) genetic and environmental factors as11 sociated with pediatric IBD; 

12 ‘‘(C) age, race or ethnicity, gender, and 

13 family history of individuals diagnosed with pe14 diatric IBD; and 

15 ‘‘(D) treatment approaches and outcomes 

16 in pediatric IBD. 

17 ‘‘(2) ADDITIONAL REQUIREMENTS.—In estab18 lishing the pediatric IBD registry under this section, 

19 the Secretary shall— 

20 ‘‘(A) identify, build-upon, and coordinate 

21 with existing public and private surveillance 

22 systems related to pediatric IBD; and 

23 ‘‘(B) establish a secure communication 

24 mechanism within the registry to facilitate pa25 tient contact with researchers studying the enviVerDate Nov 24 2008 23:59 May 07, 2009 Jkt 079200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2275.IH H2275

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1 ronmental and genetic causes of pediatric IBD 

2 or conducting clinical trials on pediatric IBD. 

3 ‘‘(d) DEFINITION.—In this section, the term ‘IBD’ 

4 means inflammatory bowel disease. 

5 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—To 

6 carry out this section, there is authorized to be appro7 priated $3,500,000 for each of the fiscal years 2010 

8 through 2014. 

9 ‘‘SEC. 320C. INCREASING PUBLIC AWARENESS OF INFLAM10 MATORY BOWEL DISEASE AND IMPROVING 

11 HEALTH PROFESSIONAL EDUCATION. 

12 ‘‘(a) IN GENERAL.—The Secretary, acting through 

13 the Director of the Centers for Disease Control and Pre14 vention, shall award grants to eligible entities for the pur15 pose of increasing awareness of inflammatory bowel dis16 ease among the general public and health care providers. 

17 ‘‘(b) USE OF FUNDS.—The Secretary may not award 

18 a grant under this section to an eligible entity unless the 

19 entity agreed to use the grant to develop educational mate20 rials and conduct awareness programs focused on inflam21 matory bowel disease, including with respect to the fol22 lowing subjects: 

23 ‘‘(1) Crohn’s disease and ulcerative colitis and 

24 their symptoms. 


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1 ‘‘(2) Testing required for appropriate diagnosis 

2 and the importance of accurate and early diagnosis. 

3 ‘‘(3) Key differences between pediatric and 

4 adult disease. 

5 ‘‘(4) Specific physical and psychosocial issues 

6 impacting pediatric patients, including stunted 

7 growth, malnutrition, delayed puberty, and depres8 sion. 

9 ‘‘(5) Treatment options for both adult and pedi10 atric patients. 

11 ‘‘(6) The importance of identifying aggressive 

12 disease in children at an early stage in order to im13 plement the most effective treatment protocol. 

14 ‘‘(7) Complications of inflammatory bowel dis15 ease and related secondary conditions, including 

16 colorectal cancer. 

17 ‘‘(8) Federal and private information resources 

18 for patients and physicians. 

19 ‘‘(9) Incidence and prevalence data on pediatric 

20 and adult inflammatory bowel disease. 

21 ‘‘(c) REPORT TO CONGRESS.—Not later than Sep22 tember 30, 2010, the Secretary shall report to the Com23 mittee on Energy and Commerce of the House of Rep24 resentatives, the Committee on Health, Education, Labor, 

25 and Pensions of the Senate, and the Committees on ApVerDate Nov 24 2008 23:59 May 07, 2009 Jkt 079200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H2275.IH H2275

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1 propriations of the House of Representatives and the Sen2 ate regarding the status of activities under this section. 

3 ‘‘(d) ELIGIBLE ENTITY.—To carry out this section, 

4 the term ‘eligible entity’ means a nonprofit patient or pro5 fessional organization with experience in serving adults 

6 and children with inflammatory bowel disease. 

7 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—For the 

8 purpose of carrying out this section, there is authorized 

9 to be appropriated $2,000,000 for each of fiscal years 

10 2010 through 2014.’’. 

11 SEC. 4. SENSE OF CONGRESS ON EXPANSION OF BIO12 MEDICAL RESEARCH ON INFLAMMATORY 

13 BOWEL DISEASE. 

14 It is the sense of the Congress that— 

15 (1) the Secretary, acting through the Director 

16 of the National Institutes of Health and the Director 

17 of the National Institute of Diabetes and Digestive 

18 and Kidney Diseases (in this section referred to as 

19 the ‘‘Institute’’) should aggressively support basic, 

20 translational, and clinical research designed to meet 

21 the research goals for inflammatory bowel disease 

22 (in this section referred to as ‘‘IBD’’) included in 

23 the National Institutes of Health National Commis24 sion on Digestive Diseases report entitled ‘‘Opportu25 nities and Challenges in Digestive Diseases ReVerDate Nov 24 2008 23:59 May 07, 2009 Jkt 079200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H2275.IH H2275

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1 search: Recommendations of the National Commis2 sion on Digestive Diseases’’, including by— 

3 (A) establishing an objective basis for de4 termining clinical diagnosis, detailed phenotype, 

5 and disease activity in IBD; 

6 (B) developing an individualized approach 

7 to IBD risk evaluation and management based 

8 on genetic susceptibility; 

9 (C) modulating the intestinal microflora to 

10 prevent or control IBD; 

11 (D) effectively modulating the mucosal im12 mune system to prevent or ameliorate IBD; 

13 (E) sustaining the health of the mucosal 

14 surface; 

15 (F) promoting regeneration and repair of 

16 injury in IBD; 

17 (G) providing effective tools for clinical 

18 evaluation and intervention in IBD; and 

19 (H) ameliorating or preventing adverse ef20 fects of IBD on growth and development in 

21 children and adolescents; 

22 (2) the Institute should support the training of 

23 qualified health professionals in biomedical research 

24 focused on IBD, including pediatric investigators; 

25 and 


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1 (3) the Institute should continue its strong col2 laboration with medical and patient organizations 

3 concerned with IBD and seek opportunities to pro4 mote research identified in the scientific agendas 

5 ‘‘Challenges in Inflammatory Bowel Disease Re6 search’’ (Crohn’s and Colitis Foundation of Amer7 ica) and ‘‘Chronic Inflammatory Bowel Disease’’ 

8 (North American Society for Pediatric Gastro9 enterology, Hepatology and Nutrition). 

10 SEC. 5. BIENNIAL REPORTS. 

11 Section 403(a)(5) of the Public Health Service Act 

12 (42 U.S.C. 283(a)(5)) is amended— 

13 (1) by redesignating subparagraph (L) as sub14 paragraph (M); and 

15 (2) by inserting after subparagraph (K) the fol16 lowing: 

17 ‘‘(L) Inflammatory bowel disease.’’. 

Æ 


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