Full text of speech

Since first attending these meetings in 1997, AT LEAST 60,000 new cases of Crohn's disease have been diagnosed in the U.S. Most of those victims are young people between the ages of 15 and 25 ... many are small children. And if Crohn's disease diagnosis is only the tip of the iceberg as in Johne's, then the numbers could be in the hundreds of thousands. While you were carrying on your committee meetings and some of you were conducting political maneuvers, countless lives were being destroyed.

Since the last JD Committee meeting, PARA has continued to create awareness…public awareness, political awareness and media awareness.

Public Awareness -- At last year's meeting we announced the debut of our new website and cited a figure of 50,000 visitors in the two years prior. That number has increased tenfold in the past year, with our current monthly hits at 60,000.

Also, in the past three years we have gained the support of Centers for Disease Control and National Institutes of Health. We are pleased to report that NIH now has several pilot projects in progress.

Shortly after last year's USAHA meeting, PARA met with CDC, and in May of this year CDC issued a Working Document on Potential Infectious Etiologies of Crohn's Disease. This document outlines the unanswered questions about a relationship between MAP and Crohn's, as well as the specific scientific research necessary to determine the answers to these questions.

Political Awareness -- As many of you will remember, there was a resolution passed by this committee in 1997 for "USAHA to create congressional awareness." That never happened as far as we could tell…so we created it ourselves. In May of this year PARA sent a delegation to Washington. We met with several Members of Congress and many legislative aides concerning our funding proposal that was submitted to the Senate and House Appropriations Committees. Our concerns were treated very seriously, and we were successful in getting language included in the Senate and House Appropriations Bills, directing NIH and CDC to conduct research.

Media Awareness -- "Project Censored" is an annual book of the prior year's top 25 important news stories that are under-reported, ignored, or misrepresented by the mainstream media. This year's book recognized the work of Lisa Chamberlain, Editor-in-Chief of the Cleveland Free Times. Her article entitled "The Crohn's Connection" publicized the relationship between MAP and Crohn's disease.

Then, a month ago the tide began to turn….the Los Angeles Times published two articles, one dealing with the fact that increasing numbers of Crohn's sufferers are benefiting from antibiotics, and the other entitled "Milk May be the Carrier of Crohn's." Other outlets are now picking up these stories.

As predicted by us last year, the hurricane is gaining in momentum and is now poised on U.S. shores. Last year we were in the calm before the storm…we are now experiencing sporadic tropical force winds. The hurricane is making its way for a direct hit on the U.S. The leaders of industry gambled that the hurricane would never materialize…. tragically, the bargaining chips they used were the livelihoods of dairy farmers.

The obstacles we have faced these past years are not scientific in nature…they are political in nature. An example is what happened last year to PARA's resolutions on beef testing and milk testing. This committee passed them unanimously, but by the end of the week they were rescinded.

When we asked why, the response in part was, quote, "there was much concern…about the usage of this information," end quote…meaning the information from the tests. We were disappointed that USAHA chose to be part of the problem rather than the solution. But it is on the record for posterity's sake.

In closing, I'd like to tell you about Lindsey who has Crohn's disease. I'm going to read portions of an article written by her mom entitled "For the Love of a Child."

"I am writing this article because time is running out. Time is running out for my daughter, Lindsey and many other children like her... Now six years old, Lindsey has had to endure a great deal in her short life. She has not thrived or grown in two years, has had 13 blood transfusions, has gallstones, has had pancreatitis, and has to wear a back brace because many years of steroids have left her with multiple spinal compressions fractures. Lindsey also has had a central line surgically implanted in her chest for four years now to inject IV antibiotics and other medicines through. She has had to endure shots twice a week, cortisteroid enemas every night, mood swings and isolation as well. She has been hospitalized over twenty-five times…. My daughter, at the age of six, has been through all the medicines currently available to treat this disease."

Nearly every single day we deal with these horrific stories from the sick and suffering. So, perhaps you will better understand why we have lost patience with the politics that surround this issue. Enough is enough.

We recognize that this audience is mixed in terms of agendas. There are those who will play the political game until the very end…the day will come when they will be held accountable for their actions. Of that, you can be sure.

But to those of you who share our concerns, for those of you we have been able to reach with our message, we challenge you to do everything within your power to work towards solving this problem. There are enough influential people in this room who could move this entire issue forward. And, yes, you as one individual can make a difference. I really do believe that. In fact, I have a quote taped to my computer that's an inspiration to me every single day. It is a quote from Margaret Mead. …

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."

Together, we can make a difference!