S 981 ISCommentsClose CommentsPermalink

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

May 5, 2009CommentsClose CommentsPermalink

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

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

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,CommentsClose CommentsPermalink

SECTION 1. SHORT TITLE.

This Act may be cited as the ‘Inflammatory Bowel Disease Research and Awareness Act’.CommentsClose CommentsPermalink

SEC. 2. FINDINGS.

Congress finds the following:CommentsClose CommentsPermalink





(1) Crohn’s disease and ulcerative colitis are serious inflammatory diseases of the gastrointestinal tract.CommentsClose CommentsPermalink





(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.CommentsClose CommentsPermalink





(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.CommentsClose CommentsPermalink





(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.CommentsClose CommentsPermalink





(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.CommentsClose CommentsPermalink





(6) Inflammatory bowel disease patients are at high risk for developing colorectal cancer.CommentsClose CommentsPermalink





(7) The total annual medical costs for inflammatory bowel disease patients are estimated at more than $2,000,000,000.CommentsClose CommentsPermalink





(8) The average time from presentation of symptoms to diagnosis in children is 3 years.CommentsClose CommentsPermalink





(9) Delayed diagnosis of inflammatory bowel disease frequently results in more-active disease associated with increased morbidity and complications.CommentsClose CommentsPermalink





(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.CommentsClose CommentsPermalink





(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’.CommentsClose CommentsPermalink

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:CommentsClose CommentsPermalink

‘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.CommentsClose CommentsPermalink





‘(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.CommentsClose CommentsPermalink





‘(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.CommentsClose CommentsPermalink





‘(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.CommentsClose CommentsPermalink

‘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.CommentsClose CommentsPermalink





‘(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:CommentsClose CommentsPermalink





‘(1) Crohn’s disease and ulcerative colitis, and their symptoms.CommentsClose CommentsPermalink





‘(2) Testing required for appropriate diagnosis, and the importance of accurate and early diagnosis.CommentsClose CommentsPermalink





‘(3) Key differences between pediatric and adult disease.CommentsClose CommentsPermalink





‘(4) Specific physical and psychosocial issues impacting pediatric patients, including stunted growth, malnutrition, delayed puberty, and depression.CommentsClose CommentsPermalink





‘(5) Treatment options for both adult and pediatric patients.CommentsClose CommentsPermalink





‘(6) The importance of identifying aggressive disease in children at an early stage in order to implement the most effective treatment protocol.CommentsClose CommentsPermalink





‘(7) Complications of inflammatory bowel disease and related secondary conditions, including colorectal cancer.CommentsClose CommentsPermalink





‘(8) Federal and private information resources for patients and physicians.CommentsClose CommentsPermalink





‘(9) Incidence and prevalence data on pediatric and adult inflammatory bowel disease.CommentsClose CommentsPermalink





‘(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.CommentsClose CommentsPermalink





‘(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.CommentsClose CommentsPermalink





‘(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.’.CommentsClose CommentsPermalink

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

(a) Sense of Congress- It is the sense of Congress that--CommentsClose CommentsPermalink





(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--CommentsClose CommentsPermalink





(A) establishing an objective basis for determining clinical diagnosis, detailed phenotype, and disease activity in inflammatory bowel disease;CommentsClose CommentsPermalink





(B) developing an individualized approach to inflammatory bowel disease risk evaluation and management based on genetic susceptibility;CommentsClose CommentsPermalink





(C) modulating the intestinal microflora to prevent or control inflammatory bowel disease;CommentsClose CommentsPermalink





(D) effectively modulating the mucosal immune system to prevent or ameliorate inflammatory bowel disease;CommentsClose CommentsPermalink





(E) sustaining the health of the mucosal surface;CommentsClose CommentsPermalink





(F) promoting regeneration and repair of injury in inflammatory bowel disease;CommentsClose CommentsPermalink





(G) providing effective tools for clinical evaluation and intervention in inflammatory bowel disease; andCommentsClose CommentsPermalink





(H) ameliorating or preventing adverse effects of inflammatory bowel disease on growth and development in children and adolescents;CommentsClose CommentsPermalink





(2) the Institute should support the training of qualified health professionals in biomedical research focused on inflammatory bowel disease, including pediatric investigators; andCommentsClose CommentsPermalink





(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).CommentsClose CommentsPermalink





(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.CommentsClose CommentsPermalink