"The Cause for a Cure for Crohn's Disease"
The March To Congress
As a result of its 1998 groundbreaking workshop on an infectious cause of Crohn's disease, the National Institute of Allergy and Infectious Diseases (NIAID) published its Recommendations for a Research Agenda. This agenda describes the research necessary to understand, diagnose and treat infectious causes of Crohn's disease. The NIAID Research Agenda opens up promising new avenues in Crohn's disease research, and marks the first step towards the creation of effective diagnostics and treatments.
Exciting though the NIAID Crohn's disease Research Agenda may be, one obstacle stands in the way of its implementation: Funding. If the research outlined in the Agenda is to be carried out, then funding must be obtained to pay for it. In 2000 and 2001 PARA approached the U.S. Congress on this issue and will continue to bring the funding issue to Congress' attention in order to obtain funding for both NIAID and CDC research.
PARA'S Submissions to Congress
In February 2000 and February 2001 PARA prepared Submissions to Congress, the main points of which include -
You can access these submissions in full at:
PARA VISITS CAPITOL HILL IN MAY, 2000
On February 6, 2000, PARA submitted to the House and Senate Appropriations Subcommittees its Request for Earmarked Funding Allocation for Research Targeted at an Infectious Cause of Crohn's Disease. Subsequent to PARA's submission, many PARA members called and wrote their representatives in the Senate and the House.
Additionally, in May,2000, a PARA delegation traveled to Washington D.C. to lobby members of the House and Senate for support of PARA's request. Upon arrival in Washington D.C., PARA learned that "language supporting its submitted request" had already been incorporated into the Senate Appropriations Bill for Fiscal Year 2001. This feat was the direct result of committed PARA members' lobbying House and Senate representatives! We are deeply thankful for our members' support -- indeed, they DID make a difference!
Further, while in Washington D.C., PARA wrote and submitted a condensed version of language to support its submitted request to the Appropriations Subcommittees. Within a short period of time, PARA learned that excerpts from this language had been incorporated into the House Appropriations Bill for Fiscal Year 2001!
Many organizations struggle for years before getting language into the House or Senate Appropriations Bills -- and, many have never succeeded in doing this. PARA, with the help of its committed membership, succeeded in accomplishing this, and in a remarkably short period of time!
PARA's 2001 Congressional Efforts
While the successes in 2000 were notable, we did not get ALL that we asked for in the House and Senate Bills. While we did succeed in incorporating "language", which was of critical importance, we did not get our specific "earmarks" as requested in our submission to the Appropriations Subcommittees.
Therefore, in February 2001 PARA submitted an updated proposal entitled "Request for Earmarked Funding Allocation for Research Targeted at Infectious Cause of Crohn's Disease" to the Appropriations Committees of the U.S. Senate and House of Representatives.
This proposal requested that the U.S. Appropriations Committees provide funding for $500 million of research. The premise was simple: We want funding for research into an infectious cause of Crohn's Disease!
PARA's Testimony Before House Appropriations Subcommittee
In support of this 2001 submission, Cheryl Miller, Co-executive Director of PARA presented powerful testimony before the House Appropriations Subcommittee on Labor, Health and Human Services, and Education, asking for earmarked funding for Crohn's disease research.
Addressing the subcommittee on March 13, 2001, Mrs. Miller, mother of a Crohn's patient, outlined the nature of the disease, the encouraging research that has increased understanding of a possible cause, and the efforts of the National Institute of Allergies and Infectious Disease (NIAID) of the National Institutes of Health (NIH) to promote further research efforts.
Miller concluded her testimony with four requests of the Subcommittee:
Miller's concluding remarks were very compelling:
PARA Submits Package to Agriculture Committee
On May 14, 2001, PARA submitted a letter and attachments to the House Committee on Agriculture, Subcommittee on Livestock and Horticulture, which were made a part of the formal congressional record of a hearing scheduled May 22, 2001, with regard to the Proposed National Milk Producers Federation's Plan for Johne's Management. PARA's concern was that Congress was not sufficiently informed about many issues surrounding the NMPF Plan, specifically that the NMPF Plan failed to inform Congress that MAP is also associated with Crohn's disease.
Highlights of this submission included key questions and points -
Is MAP in our food supply? It is an undisputed scientific fact that live MAP is excreted in the milk of infected cattle. FDA is relying upon single, highly controversial study, to conclude, quote, "it is the position of FDA that the latest research shows conclusively that commercial pasteurization does indeed eliminate this hazard," referring to MAP. Despite PARA's urgings, the FDA has ignored the overwhelming body of scientific evidence. Congress should ask why!
U.S. Agencies have passed the buck. Since 1997, PARA has been attempting to get various agencies of the U.S. Government to act on behalf of the American public with respect to our concerns about the MAP/Crohn's disease issue. (See PARA's "Paper Trail" for complete details.) What has transpired over the course of the past six years is a "passing of the buck" from one agency to the other. At best, the issue has been given mere lip service by the agencies responsible for human health. Congress should ask why!
The U.S. dairy industry now appears to see the "handwriting on the wall". The U.S. dairy industry has, for some time, been well aware of the mounting scientific evidence that implicates MAP as the cause of human Crohn's disease as well as the fact that, in the majority of scientific studies, scientists have concluded that MAP is capable of surviving U.S. pasteurization standards. In early 2001 NMPF rushed to develop a plan to test herds and to kill every cow in this nation infected with MAP and submitted its plans to request "indemnity from the U.S. Government in the amount of $1.3 billion" so that these MAP-infected cattle would be killed and sent to rendering (not for human consumption). Certainly, these sudden actions on the part of the U.S. dairy industry appear to only further support the potentially grave and critically urgent situation that this nation may likely soon find itself in with regard to possible contamination of our retail food with MAP.
Questions that need to be asked. It is not surprising that NMPF was attempting to downplay it for the public, concerned about the mounting evidence implicating MAP may cause at least some, if not most, cases of Crohn's disease. PARA urged Congress to ask the NMPF, "Why now? Why not ten years ago when Johne's was a relatively small animal disease?"
Very likely the reason it's finally being addressed is because of the Crohn's disease/MAP association. Yet, conspicuously absent in that request for funding was any mention of the human health implications. Why was this information deliberately withheld from Congress?
Summary - Congress Should Ask Why!
Just as the U.S. agencies cannot claim ignorance on these matters, the dairy and beef industries can never claim that they were not sufficiently warned about the potential impending crisis. The consequences for these industries could be catastrophic if it is proven that the industries had good reason to suspect a potential problem with their products, and yet, although it was within their power to exercise the precautionary principle to protect the children of this nation, the industries, nevertheless, chose not to do so. Yet, that is the stance they have clearly taken.
Congress Should Ask Why!
It is time for the priorities on this issue to be reversed - human health should take precedence over politics and economics. We of PARA are convinced that this can only happen if Congress intervenes immediately on behalf of the American public.
Action you can take
Please visit PARA's "How to Help" section to learn how you can get involved in creating awareness about this vital issue.
Contact PARA: http://www.crohns.org/contact.htm
Paratuberculosis Awareness & Research Association, 1999-2003