Petar Mamula, Jonathan E. Markowitz and Robert N. Baldassano (eds.)Pediatric Inflammatory Bowel Disease2nd ed. 201310.1007/978-1-4614-5061-0_52© Springer Science+Business Media New York 2013
52. Legislative Advocacy
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Crohn’s and Colitis Foundation of America, National Office, 386 Park Avenue S, 17th Floor, New York, NY 10016, USA
Abstract
From the earliest days of its founding in 1967, the goal of the Crohn’s and Colitis Foundation of America (CCFA) was to raise awareness of the public and among Members of Congress concerning the significant impact of inflammatory bowel diseases (IBD) in the United States. Its purpose was to dramatically increase IBD research supported by CCFA and by the National Institutes of Health (NIH). CCFA became and remains the largest national voluntary health agency dedicated to seeking the cause and cure of IBD and to improve the quality of life of people with these diseases. The combined efforts of CCFA and the leading national gastrointestinal professional societies, including the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN), added to the effectiveness and success of several of important IBD legislative initiatives. The IBD research appropriations at the NIH started in the early 1960s with $25,000. Through 2003 support for IBD NIH research more than doubled to $63 million. Although the global NIH funding has remained fairly constant since 2004, NIH has increased its support for IBD research by 50 %. Today’s IBD research budget at the NIH exceeds $95 million—primarily targeted to the IBD programs at the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) and the National Institute of Allergy and Infectious Diseases (NIAID). New research initiatives, including the NIDDK IBD Genetics Consortium, have grown significantly in recent years. Current legislative initiatives are seeking to add new dollars and new programs, particularly regarding the estimated 140,000 children and adolescents with IBD, or 10 % of the estimated total IBD population of 1,400,000.
Introduction
From the earliest days of its founding in 1967, the goal of the Crohn’s and Colitis Foundation of America (CCFA) was to raise awareness of the public and among Members of Congress concerning the significant impact of inflammatory bowel diseases (IBD) in the United States. Its purpose was to dramatically increase IBD research supported by CCFA and by the National Institutes of Health (NIH). CCFA became and remains the largest national voluntary health agency dedicated to seeking the cause and cure of IBD and to improve the quality of life of people with these diseases. The combined efforts of CCFA and the leading national gastrointestinal professional societies, including the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN), added to the effectiveness and success of several of important IBD legislative initiatives.
The IBD research appropriations at the NIH started in the early 1960s with $25,000. From 1999 to 2003, CCFA actively participated in the successful effort to double the budget of NIH. During this period support for IBD NIH research more than doubled to $63 million. Although the global NIH funding has remained fairly constant since 2004, NIH has increased its support for IBD research by 50%. Today’s IBD research budget at the NIH exceeds $95 million—primarily targeted to the IBD programs at the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) and the National Institute of Allergy and Infectious Diseases (NIAID). New research initiatives, including the NIDDK IBD Genetics Consortium, have grown significantly in recent years. Current legislative initiatives are seeking to add new dollars and new programs, particularly regarding the estimated 140,000 children and adolescents with IBD, or 10% of the estimated total IBD population of 1,400,000.
The CCFA recognized in the mid-1970s that it was important to have a professional presence in Washington, D.C. to recommend and represent advocacy efforts affecting patients with IBD. For over 30 years (1978), the Health and Medicine Counsel of Washington (HMCW) has assisted CCFA on IBD advocacy programs by coordinating both the Foundation’s own IBD-specific efforts as well as more encompassing efforts through the Digestive Disease National Coalition (DDNC). The DDNC was founded by CCFA leadership in 1978. The DDNC currently is comprised of 39 lay and medical member organizations and works to collectively seek Congressional authorization of certain new initiatives and to increase appropriations for all digestive disease research. The DDNC also addresses certain patient care issues within the NIH, Food and Drug Administration (FDA) and Medicare (CMS).
Legislative Initiatives
Since 1996, CCFA has worked with HMCW to meet specific IBD research and quality of life goals through federal legislation. CCFA’s most important initiatives included the creation of IBD-specific legislation.
IBD Bill Signed by President George W. Bush and Enacted into Law on November 30, 2004
The “Inflammatory Bowel Disease Research Act” was introduced in the House in January 2003 by original co-sponsors—Rep. Sue Kelly (R-NY) and Rep. Jesse Jackson, Jr. (D-IL). In February 2003, original co-sponsors Senators Harry Reid (D-NV) and Thad Cochran (R-MS) introduced the same Bill in the Senate, and CCFA launched a national effort to seek co-sponsors of the Bill in both Houses of Congress. Web e-mail and daily Internet announcements, letter campaigns and telephone calls from the national and chapter offices and from hundreds of volunteers helped to secure the co-sponsorship of 183 Representatives and 37 Senators. With the large number of bi-partisan co-sponsors supporting the Bill, President Bush was quickly able to sign it into law. It was enacted as the “Research Review Act” on November 30, 2004—just short of 2 years after the introduction of the Bills in early 2003. Professional and lay organizations that added support to CCFA’s effort to seek passage of the Bill were: Digestive Disease National Coalition (DDNC); NASPGHAN; American Gastroenterological Association (AGA); American College of Gastroenterology (ACG); United Ostomy Association (UOA); American Society for Gastrointestinal Endoscopy (ASGE); International Foundation for Functional Gastrointestinal Disorders (IFFGD); and the Hepatitis Foundation International (HFI).
The “Research Review Act” provided two major benefits for patients with IBD:
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Studies by the General Accountability Office (GAO): Social Security Disability Report and Medicare and Medicaid Coverage Report. In 2005, as mandated by the “Research Review Act,” the GAO undertook the first federal studies specific to patients with IBD. The first study investigated the challenges patients with IBD patients are facing when applying for Social Security Disability. The second study focused on Medicare and Medicaid coverage of IBD therapies including FDA-approved therapies for Crohn disease and ulcerative colitis, ostomy supplies, medical necessary foods, enteral nutrition formula, and parenteral nutrition.
CCFA and the United Ostomy Association (UOA) leaders met with GAO researchers in Washington in January of 2005 to discuss both issues. The GAO released the Social Security Disability study (GAO-05-495) in May of 2005. The report made several recommendations for improving the disability process for patients with IBD and has proven to be a beneficial resource when pursuing disability claims with the Social Security Administration.
The Medicare/Medicaid study (GAO-06-63) was issued in December of 2005 and provides a comprehensive analysis of national Medicare coverage of IBD therapies, and state-based Medicaid policies (including analysis of Medicaid coverage in all 50 states and the District of Columbia). The report serves as a guide for advocacy efforts to address gaps in coverage for Medicare and Medicaid beneficiaries.
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The Establishment of Centers for Disease Control Inflammatory Bowel Disease Epidemiology Program.
In 2002, CCFA prioritized the need to financially support a National IBD Epidemiology Study to determine the true prevalence of the disease and the unique demographic characteristics of the IBD patient population. It sought a proposal from the CDC to be underwritten by CCFA in the amount of $750,000 to create and monitor the Study. In 2005, with the passage of the “Research Review Act” CCFA secured the same amount from Congress to continue the IBD Epidemiology Program. Through 2008, Congress provided approximately $2.6 million to CDC to continue the program. CCFA serves as the administrator of the epidemiology study and directs all research activities in partnership with CDC utilizing the funds provided by the Congress. Although challenged by shrinking federal budgets, the IBD Epidemiology Program has been maintained at the CDC, due to proactive advocacy efforts, since 2004. The program receives an allocation of over $600,000 annually. In FY 2011, the level was reduced and through CCFA advocacy efforts, the funding was successfully reinstated. This research is critical to providing accurate data on disease incidence.
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