Many of you know that my wife suffers from Ulcerative Colitis. I just found out about some exciting legislation that President Bush signed at the end of November. Here is the news story:
PRESIDENT BUSH SIGNS HISTORIC LEGISLATION ON INFLAMMATORY BOWEL DISEASE INTO LAW
Posted on Tuesday, November 30,2004.
Today, President George W. Bush signed into law the first piece of legislation focused on Crohn’s disease and ulcerative colitis. Collectively known as inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis are chronic disorders of the gastrointestinal tract which afflict approximately 1 million Americans (100,000 or 10% of whom are children under the age of 18). IBD can cause severe diarrhea, abdominal pain, fever, and rectal bleeding. Complications include; arthritis, osteoporosis, anemia, liver disease, and colon cancer. IBD represents a major cause of morbidity from digestive illness, and although it is not fatal, IBD is often devastating.
The legislation signed by the President today is entitled the “Research Review Act” and requires the following:
The Centers for Disease Control and Prevention to report to Congress by May 1, 2005 on the status of its inflammatory bowel disease epidemiology study. The goal of this landmark study is to gain a better understanding of the true prevalence of the disease in the U.S., and the unique demographic characteristics of the IBD patient population. This information will yield invaluable clues regarding the role that environmental and genetic factors play in the development of the disease.
The Government Accountability Office to submit a report to Congress on the coverage standards of Medicare and Medicaid for therapies that IBD patients need to maintain their health (i.e., ostomy supplies, parenteral nutrition, enteral nutrition, medically necessary food products, and FDA approved therapies for Crohn’s and ulcerative colitis). The study will take into consideration the appropriate outpatient or home health care settings. This report will help identify gaps in Medicare/Medicaid coverage that impact the health and quality of life for IBD patients, and empower the IBD community to pursue appropriate changes in reimbursement policy.
The Government Accountability Office to report to Congress on the challenges IBD patients encounter when applying for Social Security Disability coverage, including recommendations for improving the application process for IBD patients. The information yielded from this study will enable the IBD community to work with Congress and the Social Security Administration to pursue improvements in disability coverage for patients.
During the 108th Congress, the Crohn’s & Colitis Foundation of America and its National IBD Advocacy Network, which represents patients, families, and friends nationwide, dedicated themselves to advancing legislation on IBD. The three provisions on IBD enacted as part of the “Research Review Act” today were taken directly from legislation entitled the “Inflammatory Bowel Disease Act.” Working in partnership with the members of Congress who introduced the “IBD Act”, CCFA helped secure 184 co-sponsors for the bill in the House, and 37 co-sponsors in the Senate. The tremendous bipartisan support for this legislation in the House and Senate contributed greatly to the passage and enactment of the “Research Review Act.”
CCFA expresses its deep appreciation to President Bush and the following members of Congress who championed the cause of IBD patients on Capitol Hill; Senator Harry Reid (D-NV), Congresswoman Sue Kelly (R-NY), Senator Thad Cochran (R-MS), Senator Arlen Specter (R-PA), Congressman Michael Bilirakis (R-FL), Congressman Jesse Jackson, Jr. (D-IL), Senator Judd Gregg (R-NH) and Congressman Sherrod Brown (D-OH).
CCFA encourages all members of the IBD community to thank their representatives and senators for supporting passage of the Research Review Act. For information regarding Congress, please visit the Congressional Web site (thomas.loc.gov)