| Title Page |
| Who is Para? |
| Letter |
| Appendix I |
| Appendix II |
| Appendix III |
| Appendix IV |
| Appendix V |
| Appendix VI |
PARA's letter to Congress
January 31, 2001
Dear Member of Congress:
Many thousands of times each year, the following scene is played out in medical facilities across this nation:
A mother waits. She alternates between prayer and terror, interspersed with sorrow at having watched her child being repeatedly put through some of the most ungodly tests that modern medicine has to offer...endoscopy, barium enema, sigmoid, and now colonoscopy. After what seems an eternity, the doctor enters the room and with great sadness, he quietly states, "I am so very sorry. Your child has Crohn's disease..."
In silence and in tears, the mother collapses into the nearest chair. She wants to pick up her child and run away with her to protect her from all of this. But instead, she remains in the chair as the physician continues describing Crohn's: "...INCURABLE... CHRONIC... PROGRESSIVE... DEBILITATING..." -- every word a death sentence to all of the dreams she had for her child...[See Appendix IV for a description of Crohn's disease].
We are writing to you on behalf of the millions of people in the U.S. daily impacted by the devastating disease known as Crohn's disease -- for there is good news, wonderful news -- and most important of all, there is now reason for great hope! For the fact is that a rapidly growing and increasingly compelling body of evidence implicates an infectious cause -- a bacterium, known as Mycobacterium avium subspecies paratuberculosis, or MAP -- for Crohn's disease.
In light of this evidence, the U.S. National Institutes of Health, National Institute of Allergy and Infectious Diseases (NIH/NIAID) has moved quickly and aggressively into the lead to determine the truth about the MAP/Crohn's connection. They recently published a new and historic Research Agenda targeting an infectious cause for Crohn's disease. In support of and in conjunction with the NIH/NIAID, the U.S. Centers for Disease Control (CDC) has also recently issued a Working Document relative to its concern about the need to identify risk factors for human infection. [See Appendix I for the NIAID Research Agenda and CDC Statement]. Indeed, we are in a unique situation -- with the NIH/NIAID and CDC having determined the research desperately needs to be done and having set forth precisely what needs to be done.
However, at the same time that we are excited about research uncovering a possible cure for Crohn's in the very near future, we are also gravely concerned about the food safety issues associated with MAP. More specifically, MAP causes intestinal disease in cattle known as Johne's disease -- an intestinal disease that is clinically and pathologically similar to Crohn's disease in humans. In 1996, the USDA reported a MAP infection prevalence rate of 40 percent (40%) in our large U.S. dairy herds -- and despite numerous pleas from PARA, the USDA and FDA have not taken significant steps since this time to stem the infection rate in U.S. dairy herds. Moreover, MAP is shed in the milk of infected cattle and the majority of scientific studies have shown that MAP may be capable of surviving U.S pasteurization standards (See Appendix V for additional details). Crohn's is a devastating disease of the young. Every day in this nation babies are fed large quantities of milk -- milk which may one day be proven to contain live MAP capable of causing Crohn's disease in humans. These food safety concerns must be urgently addressed, lest more and more children in this nation potentially have their lives devastated from this disease. We request your immediate intervention and assistance in this matter.
As a further consideration, curing Crohn's would result in a minimum cost savings of $3.2 billion annually. [See Appendix II]. Moreover, although the numbers of Crohn's and AIDS patients in the U.S. is roughly equal, currently, $1.8 billion dollars is allocated annually specifically for AIDS research, but $0 (zero) dollars are allocated annually for research into an infectious cause of Crohn's disease [See Appendix III].
At this most opportune time, with medical science potentially on the verge of finding the cure for Crohn's disease, it is critical to address this issue with utmost urgency. In conjunction with addressing the critical food safety concerns, what is most urgently needed now is the funding! We must ask your help in obtaining a "Congressional mandate" to specifically earmark $500 million in new funds for research into an infectious cause for Crohn's disease, and for direct allocation of these funds as follows: $300 million to NIH/NIAID and $200 million to the CDC, to complete the entirely new Research Agendas for Crohn's disease.
We look forward to working closely with you, as together we ensure that these urgent food safety issues are properly addressed and the critical research is made a reality!
Sincerely,
PARA - Board of Directors
Subcommittee on Congressional Submission
Cheryl Miller
Karen Meyer
Steve Merkel