[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1113 Introduced in House (IH)]







110th CONGRESS
  1st Session
                                H. R. 1113

  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, and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 16, 2007

  Mr. Jackson of Illinois (for himself and Mr. Castle) 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 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 
Enhancement 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; 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 is estimated at more than $2,000,000,000.

SEC. 3. NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY 
              DISEASES; INFLAMMATORY BOWEL DISEASE RESEARCH EXPANSION.

    (a) In General.--The Director of the National Institute 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 inflammatory 
        bowel disease, including the interaction of genetic and 
        environmental factors in the development 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 research, including 
        clinical studies and treatment trials.
            (5) Expansion of the Institute's Inflammatory Bowel Disease 
        Centers program with a focus on pediatric research.
            (6) Other research initiatives identified by the scientific 
        document entitled ``Challenges in Inflammatory 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 appropriated $80,000,000 for 
        fiscal year 2008, $90,000,000 for fiscal year 2009, and 
        $100,000,000 for fiscal year 2010.
            (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 pediatric investigators.

SEC. 4. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

    Part B of title III of the Public Health Service Act (42 U.S.C. 243 
et seq.) is amended by inserting after section 317S the following:

``SEC. 317T. PEDIATRIC INFLAMMATORY BOWEL DISEASE REGISTRY.

    ``(a) Establishment.--
            ``(1) In general.--Not later than 6 months after the 
        receipt of the report described in subsection (b)(3), the 
        Secretary, acting through the Director of the Centers for 
        Disease Control and Prevention and in consultation with a 
        national voluntary patient organization with experience serving 
        the population of individuals with pediatric inflammatory bowel 
        disease and organizations representing physicians and other 
        health professionals specializing in the treatment of this 
        population, shall--
                    ``(A) develop a system to collect data on pediatric 
                IBD; and
                    ``(B) establish a national registry, to be known as 
                the National Pediatric IBD Registry, for the collection 
                and storage of such data.
            ``(2) Purposes of registry.--The National Pediatric IBD 
        Registry--
                    ``(A) shall include a population-based registry of 
                cases of pediatric IBD in the United States;
                    ``(B) shall be used to gather data concerning--
                            ``(i) pediatric IBD, including the 
                        incidence and prevalence of pediatric IBD in 
                        the United States;
                            ``(ii) the genetic and environmental 
                        factors that may be associated with pediatric 
                        IBD;
                            ``(iii) the age, race or ethnicity, gender, 
                        and family history of individuals who are 
                        diagnosed with pediatric IBD;
                            ``(iv) treatment approaches and outcomes; 
                        and
                            ``(v) other matters as recommended by the 
                        Advisory Committee established under subsection 
                        (b); and
                    ``(C) shall be used to establish a secure method to 
                put patients in contact with scientists studying the 
                environmental and genetic causes of pediatric IBD or 
                conducting clinical trials on pediatric IBD.
    ``(b) Advisory Committee.--
            ``(1) Establishment.--Not later than 90 days after the date 
        of the enactment of this section, the Secretary, acting through 
        the Director of the Centers for Disease Control and Prevention, 
        shall establish a committee to be known as the Advisory 
        Committee on Pediatric Inflammatory Bowel Disease.
            ``(2) Members.--The members of the Advisory Committee shall 
        be appointed by the Secretary, acting through the Director of 
        the Centers for Disease Control and Prevention, and shall 
        include at least one representative of each of the following:
                    ``(A) A national voluntary patient organization 
                that focuses on pediatric IBD and has demonstrated 
                experience in pediatric IBD research, care, and patient 
                services.
                    ``(B) A professional pediatric gastroenterology 
                organization with expertise in pediatric research, 
                care, and patient services.
                    ``(C) The National Institutes of Health.
                    ``(D) If recommended by the Director of the 
                National Institutes of Health--
                            ``(i) the National Institute of Diabetes 
                        and Digestive and Kidney Diseases;
                            ``(ii) the National Institute of Allergy 
                        and Infectious Diseases;
                            ``(iii) the National Institute of Child 
                        Health and Human Development; and
                            ``(iv) any other appropriate national 
                        research institute or national center.
                    ``(E) The Centers for Disease Control and 
                Prevention.
                    ``(F) Pediatric gastroenterologists and other 
                clinicians who have experience with data registries.
                    ``(G) Epidemiologists who have experience with data 
                registries.
                    ``(H) Geneticists or experts in genetics who have 
                experience with the genetics of pediatric IBD.
                    ``(I) Other individuals with an interest in 
                developing and maintaining the National Pediatric IBD 
                Registry.
            ``(3) Study.--The Advisory Committee shall conduct a study 
        and make recommendations on--
                    ``(A) the development and maintenance of the 
                National Pediatric IBD Registry;
                    ``(B) the type of information to be collected and 
                stored in the Registry;
                    ``(C) the manner in which such data is to be 
                collected; and
                    ``(D) the use and availability of such data 
                including guidelines for such use.
            ``(4) Report.--Not later than 6 months after the date on 
        which the Advisory Committee is established, the Advisory 
        Committee shall submit a report to the Secretary and the 
        Congress on the results of the study conducted under paragraph 
        (3), including the recommendations of the Advisory Committee 
        with respect to such results.
    ``(c) Grants.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, may award grants to, and 
enter into contracts and cooperative agreements with, public or private 
nonprofit entities for the collection, analysis, and reporting of data 
on pediatric IBD.
    ``(d) Coordination With Existing Registries and Data 
Repositories.--
            ``(1) In general.--In establishing the National Pediatric 
        IBD Registry under subsection (a), the Secretary, acting 
        through the Director of the Centers for Disease Control and 
        Prevention, shall identify, build upon, expand, and coordinate 
        among existing public and private surveillance systems, and 
        registries concerning pediatric IBD.
            ``(2) Coordination with nih.--The Secretary shall ensure 
        that epidemiological and other types of information obtained 
        under subsection (a) are made available to the National 
        Institutes of Health.
    ``(e) Definitions.--In this section:
            ``(1) The term `Advisory Committee' means the Advisory 
        Committee on Pediatric Inflammatory Bowel Disease established 
        under subsection (b).
            ``(2) The terms `national research institute' and `national 
        center' have the meanings given to those terms in section 
        401(g).
            ``(3) The term `national voluntary patient organization' 
        means a national non-profit patient organization with chapters 
        in States throughout the United States.
            ``(4) The term `pediatric IBD' means pediatric inflammatory 
        bowel disease.
    ``(f) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $5,000,000 for fiscal year 2008 
and such sums as may be necessary for each of fiscal years 2009 and 
2010.''.

SEC. 5. CENTERS FOR DISEASE CONTROL AND PREVENTION; NATIONAL 
              INFLAMMATORY BOWEL DISEASE 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 paragraph (1) to the Committee on Energy and 
        Commerce and the Committee on Appropriations of the House of 
        Representatives and to the Committee on Health, Education, 
        Labor and Pensions and the Committee on Appropriations of the 
        Senate.
    (b) Content.--
            (1) In general.--The National Inflammatory Bowel Disease 
        Action Plan shall address strategies for determining the unique 
        demographic, geographic, and environmental-exposure 
        characteristics of the inflammatory bowel disease population 
        through the expansion of appropriate epidemiological 
        activities.
            (2) Certain requirements.--The Plan referred 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 prevent the 
                progression of the disease and the development 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 2008.
                                 <all>