 is that you form a grassroots organization and get politically proactive.'"
So she and Kennedy began communicating via e-mail, and Meyer met two other people, Cheryl Miller and Stephen Merkel -- both of whom came upon Kennedy's Web site while researching Crohn's in hopes of providing answers to their loved ones affected by the disease. Together, the four of them formed PARA, or the Paratuberculosis Awareness and Research Association, in October 1997 and launched their own Web site.
"Before, in order to conduct a grassroots effort without the Internet, it would have been impossible," says Meyer. "Through the power of the Internet, we think we're responsible for bringing the researchers together. Before this, hardly any of them were in contact. Now they're communicating."
In addition to linking researchers from all corners of the globe -- including Australia, Ireland, Great Britain and in the United States, Florida, Texas and Massachusetts -- PARA also embarked on a major lobbying effort, questioning the FDA about milk safety and the USDA about efforts to control Johne's disease, and calling for Congressional hearings and legislation. They attended U.S. Animal Health Association meetings, sparring with the head of National Milk Producers Federation. In a word, they have been dogged.
The FDA -- despite four studies that conclude Mp survives the pasteurization process -- insists that milk is safe, relying on the two studies that show Mp does not survive. In a letter dated Feb. 9, 1998, Joseph Smucker, the FDA's milk safety team leader wrote, "After a review of the available literature on this subject, it is the position of FDA that the latest research shows conclusively that commercial pasteurization does indeed eliminate this hazard" (emphasis added).
In another letter to PARA, the FDA writes, "The available information suggests that only low levels of M. paratuberculosis can be expected to be found in raw milk and, because the organism is very slow growing, only low levels can be expected in milk when it is subjected to the pasteurization process," which is described as "designed to be fail safe."
The USDA insists that the agency is doing everything it can with regard to Johne's disease, despite having allocated less than one percent of its grant budget to a problem that is spreading quickly. The USDA also points to having formed the National Johne's Working Group in 1994. Interestingly enough, the executive committee of this working group consists of three people, two of whom are industry representatives: John Adams of the National Milk Producer's Federation and Gary Weber of the National Cattleman's Beef Association.
The leaders of the dairy industry point to the FDA's determination that milk is safe and the considerable scientific debate as to whether or not Mp is even a human pathogen. "From the dairy industry's standpoint," says Chris Galen, a spokesperson for the National Milk Producer's Federation, a lobbying organization based in Arlington, Va., "it's something that bears watching. But at this point, it doesn't really look like there's a direct correlation between the bacteria and Crohn's disease."
When asked if the public should be made aware that a handful of respected researchers around the world are investigating the possibility that there is a connection, Galen responds, "There are people who think aliens are invading the planet and maybe we should be made aware of that too, but most people would probably agree that there isn't a lot of evidence of that.
"I'm using that as a facetious example," continues Galen. "I'm not trying to characterize those people who think there is a definitive link between the Johne's organism and Crohn's disease as people who also believe in little green men. What I'm saying simply is that the preponderance of the scientific evidence at this time does not indicate that there is a link between Mycobacterium paratuberculosis and Crohn's disease in humans."
"The agencies that are responsible for regulating animal industries and food safety are also responsible for promoting those indu