[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[S. 981 Introduced in Senate (IS)]

111th CONGRESS
  1st Session
                                 S. 981

  To support research and public awareness activities with respect to 
          inflammatory bowel disease, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              May 5, 2009

   Mr. Reid introduced the following bill; which was read twice and 
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 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.

    Congress finds the following:
            (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 3 years.
            (9) Delayed diagnosis of inflammatory bowel disease 
        frequently results in more-active disease associated with 
        increased morbidity and complications.
            (10) Congress has appropriated $3,480,000 from fiscal year 
        2005 to fiscal year 2009 for epidemiology research on 
        inflammatory bowel disease through the Centers for Disease 
        Control and Prevention.
            (11) 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 PUBLIC HEALTH ACTIVITIES ON INFLAMMATORY BOWEL 
              DISEASE AT THE CENTERS FOR DISEASE CONTROL AND 
              PREVENTION.

    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 PROGRAM.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall conduct, support 
and expand existing epidemiology research on inflammatory bowel disease 
in both pediatric and adult populations.
    ``(b) 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, a patient or 
medical organization with expertise in conducting inflammatory bowel 
disease research to develop and administer the epidemiology program.
    ``(c) Rule of Construction.--Nothing in this section shall be 
construed to limit the authority of the Centers for Disease Control and 
Prevention to support a pediatric inflammatory bowel disease patient 
registry.
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $1,500,000 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.--An eligible entity shall use grant funds under 
this section to develop educational materials and conduct awareness 
programs focused on 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) Eligible Entity.--For purposes of this section, the term 
`eligible entity' means a patient or medical organization with 
experience in serving adults and children with inflammatory bowel 
disease.
    ``(d) Report to Congress.--Not later than September 30, 2010, the 
Secretary shall submit 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 Committee on Appropriations of the 
House of Representatives and the Senate, a report regarding the status 
of activities carried out under this section.
    ``(e) Authorization of Appropriations.--For the purpose of carrying 
out this section, there is authorized to be appropriated such sums as 
may be necessary for each of fiscal years 2010 through 2014.''.

SEC. 4. EXPANSION OF BIOMEDICAL RESEARCH ON INFLAMMATORY BOWEL DISEASE.

    (a) Sense of Congress.--It is the sense of Congress that--
            (1) the Secretary of Health and Human Services, 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 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'', which shall include--
                    (A) establishing an objective basis for determining 
                clinical diagnosis, detailed phenotype, and disease 
                activity in inflammatory bowel disease;
                    (B) developing an individualized approach to 
                inflammatory bowel disease risk evaluation and 
                management based on genetic susceptibility;
                    (C) modulating the intestinal microflora to prevent 
                or control inflammatory bowel disease;
                    (D) effectively modulating the mucosal immune 
                system to prevent or ameliorate inflammatory bowel 
                disease;
                    (E) sustaining the health of the mucosal surface;
                    (F) promoting regeneration and repair of injury in 
                inflammatory bowel disease;
                    (G) providing effective tools for clinical 
                evaluation and intervention in inflammatory bowel 
                disease; and
                    (H) ameliorating or preventing adverse effects of 
                inflammatory bowel disease on growth and development in 
                children and adolescents;
            (2) the Institute should support the training of qualified 
        health professionals in biomedical research focused on 
        inflammatory bowel disease, including pediatric investigators; 
        and
            (3) the Institute should continue its strong collaboration 
        with medical and patient organizations concerned with 
        inflammatory bowel disease 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).
    (b) Biennial Reports.--As part of the biennial report submitted 
under section 403 of the Public Health Service Act (42 U.S.C. 283), the 
Secretary of Health and Human Services shall include information on the 
status of inflammatory bowel disease research at the National 
Institutes of Health.
                                 <all>