[Congressional Record Volume 155, Number 68 (Tuesday, May 5, 2009)]
[Senate]
[Pages S5142-S5143]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. REID:
  S. 981. A bill to support research and public awareness activities 
with respect to inflammatory bowel disease, and for other purposes; to 
the Committee on Health, Education, Labor, and Pensions.
  Mr. REID. Mr. President, I ask unanimous consent that the text of the 
bill be printed in the Record.
  There being no objection, the text of the bill was ordered to be 
printed in the Record, as follows:

                                 S. 981

       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.

[[Page S5143]]

       ``(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.
                                 ______