To expand research regarding inflammatory bowel disease, and for other purposes.

January 8, 2003

Mrs. KELLY introduced the following bill; which was referred to the Committee on Energy and Commerce

To expand research regarding 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 Act'.

SEC. 2. FINDINGS.

Congress makes the following findings:

(1) Crohn's disease and ulcerative colitis are serious inflammatory diseases of the gastrointestinal tract. 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. 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, crampy abdominal pain, fever, and rectal bleeding. There is no known cause of inflammatory bowel disease, or medical cure.

(2) It is estimated that up to 1,000,000 people in the United States suffer from inflammatory bowel disease.

(3) In 1990, the total annual medical costs for Crohn's disease patients was estimated at $1,000,000,000 to $1,200,000,000.

(4) In 1990, the total annual medical costs for ulcerative colitis patients was estimated at $400,000,000 to $600,000,000.

(5) Inflammatory bowel disease patients are at high-risk for developing colorectal cancer.

SEC. 3. 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) Animal model research on inflammatory bowel disease, including genetics in animals.

(3) Clinical inflammatory bowel disease research, including clinical studies and treatment trials.

(4) Other research initiatives identified by the scientific document entitled `Challenges in Inflammatory Bowel Disease'.

(b) AUTHORIZATION OF APPROPRIATIONS-

(1) IN GENERAL- For the purpose of carrying out this section, there are authorized to be appropriated $75,000,000 in fiscal year 2004, $100,000,000 in fiscal year 2005, and such sums as may be necessary for fiscal years 2006 and 2007.

(2) RESERVATION- Of the funds authorized to be appropriated under paragraph (1), not more than 20 percent of such funds shall be reserved to fund the training of qualified health professionals in biomedical research focused on inflammatory bowel disease and related disorders.

SEC. 4. INFLAMMATORY BOWEL DISEASE PREVENTION AND EPIDEMIOLOGY.

(a) IN GENERAL- The Director of the Centers for Disease Control and Prevention shall establish a national program of prevention and epidemiology to determine the prevalence of inflammatory bowel disease in the United States, and conduct public and professional awareness activities on inflammatory bowel disease.

(b) AUTHORIZATION OF APPROPRIATIONS- For the purpose of carrying out this section, there are authorized to be appropriated $5,000,000 in fiscal year 2004, and such sums as may be necessary for fiscal years 2005 through 2007.

SEC. 5. STUDY OF INFLAMMATORY BOWEL DISEASE RELATED SERVICES.

(a) IN GENERAL- The Institute of Medicine of the National Academics of Science shall conduct a study on the coverage standards of medicare, medicaid, and the private insurance market for the following therapies:

(1) Parenteral nutrition.

(2) Enteral nutrition formula.

(3) Medically necessary food products.

(4) Ostomy supplies.

(5) Therapies approved by the Food and Drug Administration for Crohn's disease and ulcerative colitis.

(b) CONTENT- The study shall also take into account the appropriate outpatient or home health care delivery settings.

(c) REPORT- Not later than 6 months after the date of enactment of this Act, the Institute of Medicine shall submit a report to Congress describing the findings of the study.

(d) AUTHORIZATION OF APPROPRIATIONS- There are authorized to be appropriated to carry out this section, such sums as may be necessary.

SEC. 6. SOCIAL SECURITY DISABILITY FOR INFLAMMATORY BOWEL DISEASE PATIENTS.

(a) IN GENERAL- The General Accounting Office shall conduct a study of the problems patients encounter when applying for disability insurance benefits under title II of the Social Security Act. The study will also include recommendations for improving the application process for inflammatory bowel disease patients.

(b) REPORT- Not later than 6 months after the date of enactment of this Act, the General Accounting Office shall submit a report to Congress describing the findings of the study.

(c) AUTHORIZATION OF APPROPRIATIONS- There are authorized to be appropriated to carry out this section, such sums as may be necessary.

END