[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2275 Introduced in House (IH)]

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.

    Be it enacted by the Senate and House of Representatives 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:
            (1) Crohn's disease and ulcerative colitis are serious 
        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 inflammation 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 colitis behave 
        similarly, they are collectively known as inflammatory bowel 
        disease. Both diseases present a variety of symptoms, including 
        severe diarrhea; abdominal 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 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 inflammatory 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 associated with 
        increased morbidity and complications.
            (10) The National Institutes of Health National Commission 
        on Digestive Diseases issued comprehensive 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: Recommendations 
        of the National Commission on Digestive Diseases''.

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 section 320A the following:

``SEC. 320B. INFLAMMATORY BOWEL DISEASE EPIDEMIOLOGY RESEARCH AND 
              PEDIATRIC PATIENT REGISTRY PROGRAM.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, 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 
research and registry program, including--
            ``(1) expansion of existing IBD epidemiology program 
        research activities within the National Center for Chronic 
        Disease Prevention and Health Promotion; and
            ``(2) establishment, within one year of enactment of this 
        section, of a population-based registry of pediatric IBD 
        patients for the purposes of data collection, research, and 
        patient services.
    ``(c) Pediatric IBD Registry.--
            ``(1) Focus.--The pediatric IBD registry established under 
        this section shall focus on, but not be limited to, data 
        collection, storage and analysis regarding--
                    ``(A) the incidence and prevalence of pediatric IBD 
                in the United States;
                    ``(B) genetic and environmental factors associated 
                with pediatric IBD;
                    ``(C) age, race or ethnicity, gender, and family 
                history of individuals diagnosed with pediatric IBD; 
                and
                    ``(D) treatment approaches and outcomes in 
                pediatric IBD.
            ``(2) Additional requirements.--In establishing 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 patient contact with 
                researchers studying the environmental 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 appropriated $3,500,000 for each of the 
fiscal years 2010 through 2014.

``SEC. 320C. INCREASING PUBLIC AWARENESS OF INFLAMMATORY BOWEL DISEASE 
              AND IMPROVING HEALTH PROFESSIONAL EDUCATION.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall award grants to 
eligible entities for the purpose of increasing awareness of 
inflammatory bowel disease 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 materials and conduct awareness programs focused 
on inflammatory bowel disease, including with respect to the following 
subjects:
            ``(1) Crohn's disease and ulcerative colitis and their 
        symptoms.
            ``(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 depression.
            ``(5) Treatment options for both adult and pediatric 
        patients.
            ``(6) The importance of identifying aggressive disease in 
        children at an early stage in order to implement the most 
        effective treatment protocol.
            ``(7) Complications of inflammatory bowel disease 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 September 30, 2010, the 
Secretary shall report to the Committee on Energy and Commerce of the 
House of Representatives, the Committee on Health, Education, Labor, 
and Pensions of the Senate, and the Committees on Appropriations of the 
House of Representatives and the Senate 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 professional 
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 BIOMEDICAL 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 Commission on 
        Digestive Diseases report entitled ``Opportunities and 
        Challenges in Digestive Diseases Research: Recommendations of 
        the National Commission on Digestive Diseases'', including by--
                    (A) establishing an objective basis for determining 
                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 immune 
                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 effects 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
            (3) the Institute should continue its strong collaboration 
        with medical and patient organizations concerned with IBD and 
        seek opportunities to promote research identified in the 
        scientific agendas ``Challenges in Inflammatory Bowel Disease 
        Research'' (Crohn's and Colitis Foundation of America) and 
        ``Chronic Inflammatory Bowel Disease'' (North American Society 
        for Pediatric Gastroenterology, 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 subparagraph (M); 
        and
            (2) by inserting after subparagraph (K) the following:
                    ``(L) Inflammatory bowel disease.''.
                                 <all>