Letter to Congress:
This letter was sent to each individual member
of the DHHS Appropriations Subcommittees in the Senate and House.

February 6, 2000

Dear [Senator]/[Representative]:

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. [See Appendix I for the NIAID Research Agenda]. In support of, and in conjunction with, the NIH/NIAID, the U.S. Centers for Disease Control (CDC) has also recently announced that it is concerned about the need to identify risk factors for human infection. Indeed, we are in a unique situation -- with the NIH/NIAID having determined the research desperately needs to be done and having set forth precisely what needs to be done. In fact, all necessary "criteria" and "definition of needs" are already set in place, and by the most highly esteemed health organization in the world!

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. All that is 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 NIH/NIAID's entirely new Research Agenda for Crohn's disease. We look forward to working closely with you, as together we ensure this critical research is made a reality!

Sincerely,

Board of Directors - PARA

Karen Meyer

Cheryl Miller

Steve Merkel