I would like to thank you for the opportunity to address you this afternoon on a matter of utmost concern to many people, that is, Crohn's disease and its possible link with Johne's disease. On behalf of the 2,000,000 sufferers of this disease in the U.S., the 80 who will be stricken with this disease today alone, I am their voice today. I am also the voice for the Millers, the couple who stood by us on Saturday as parents, their daughter having had Crohn's for ten years. They're not here this afternoon because they had to leave suddenly this morning because their daughter had emergency surgery for bowel obstruction. They were not even able to check out of the hotel before the surgery was in progress. You see, this is the way we live our lives...waiting for the other shoe to drop at all times.
At this time I am not going to review or otherwise discuss with you the scientific evidence that supports or refutes a causative link between Johne's disease and Crohn's disease. All of you are aware, or should be aware, of the scientific facts surrounding this issue. I have come here as a mother of a Crohn's disease patient to provide you with a perspective that perhaps none of you have come to appreciate. It is my sincere hope that with this understanding, you will help me as well as the millions of other mothers, fathers, and patients that so desperately seek answers.
First, although I am not a scientist, I have done a lot of reading and research and have spoken to and had correspondence with experts in the field, and based on that, I have learned that there are many things that are known about this association and many things that are unknown at this point in time. What IS known is that M. paratuberculosis is associated with Crohn's disease. What is NOT known is whether or not that association is related to the cause of the disease.
It would be irresponsible for me or anyone else to stand here and state that M. paratuberculosis IS the cause of Crohn's disease, because that has not been proven. On the other hand, however, it is likewise irresponsible to state that M. paratuberculosis is NOT the cause of Crohn's disease, simply because it has not been proven.
I am personally tired of hearing that "it has not been proven" as an answer to my concerns and questions. The lack of positive proof should not negate this theory any more than two wrongs make a right, particularly when so little money and effort has been devoted to this subject. This theory is not something new, but has been seriously discussed since the mid 1980's, funded with pathetically inadequate research dollars.
There have been studies that contradict the association of M. paratuberculosis and Crohn's disease. Some researchers have not found paratuberculosis in humans with Crohn's disease. This does not mean that paratuberculosis does not cause Crohn's disease. It just means that paratuberculosis is immensely difficult to find. You must remember this: Absence of evidence is not evidence of absence. What gives negative data its value and power is not science, but politics.
I have come to understand and even appreciate the politics of this subject. I understand what it means to the USDA, to the dairy industry, to the farmer. I understand and appreciate that you don't want someone going off "half-cocked" causing a public outcry about something not proven. I can understand all that. But can you understand the other side? Can you understand the suffering patients must endure?
Have you ever watched a young healthy child wither away physically and die emotionally,
with the medical profession watching and scratching their heads wondering what to
do? Have you ever had to stand by and watch a young, energetic and enthusiastic boy
in the prime of his life have his future taken from him? .........
(The portion relating to details concerning my son's illness and what our lives have been
like were included at this point, but out of respect for my son's privacy, I have
chosen not to share those details on the internet. I have included some statements
that were made during that portion of the speech.)
In May when I discovered the information in Alan Kennedy's web site, our doctor began..... the antibiotic regime of clarithramycin (Biaxin) and Rifabutin that Prof. Hermon-Taylor in England has achieved a 95% remission with. Because of this remarkable remission rate, one must indeed wonder if this is a disease of a bacterial nature, much the same scenario as the HPylori controversy in recent years. If these antibiotics are indeed a cure because it kills the bacteria, it is not a cure-all because damage has already been done...... This is not the future I had planned for the baby I held in my arms...
... I have encountered hundreds of people these last few months who have more horrific stories to tell. There are so many children, small children, who have been ravaged by this disease, teenagers who have given up. This is not a disease of the old, of the disabled, of the poor. This is a disease, by definition, that affects people during the "prime of their lives," predominantly between the ages of 15 and 25.
I realize the resolutions we have provided to you are unusual (referring to the resolutions that PARA presented earlier to the NJWG), to say the least. They are not formally proposed by the NJWG, as is usually standard procedure. It is my understanding to try to have these introduced would not fall within the parameters of proper procedure. But I believe extreme circumstances call for extreme measures. I refuse to believe that the door is absolutely closed to the introduction of these resolutions. Having said that, I want it on the record we did attempt to have these introduced. I hope at least one of you committee members will have the conviction and courage to introduce these. Even if this committee is unable to do so today, the USAHA meeting is not over. Surely, this could be accomplished. My presence here today is proof that where there's a will, there's a way.
I would like to now address some of the resolutions. We acknowledge that the NJWG did take some steps in the right direction in terms of moving forward on this matter, and we are hopeful that progress will be multiplied many times over in the future. But the action we are requesting was not addressed adequately in some areas and blatantly absent in others. To that end, we have drafted and made available for distribution to you our alternatives to the NJWG's resolutions/recommendations. (Copies of PARA's proposed resolutions were distributed prior to the speech as well.)
These resolutions are necessary to protect the public and find answers on the zoonotic potential of M. paratuberculosis. We did not come here to negotiate on any of our positions. Negotiations have a place in the business world when mergers and corporate takeovers take place, not when the public is at risk, not when our children's lives are on the brink of disaster, not when so much is at risk.
As to the resolutions we have proposed entitled PARA 1 and PARA 2, these are the heart and soul of our position. By failing to address our resolution entitled PARA 1, the NJWG has failed Crohn's patients and the American public. Number 1 is absolutely vital. As has been made very clear in all of my letters to the USDA and FDA, there is evidence to suggest that M. paratuberculosis survives pasteurization. The logical deduction from that is, very possibly M. paratuberculosis is in the retail milk supply to some degree. To ignore that problem and give it lip service by addressing it only to the extent of conducting more pasteurization tests does nothing but delay determination of the safety of the milk and serves to perpetuate the controversy. More simulations are a mere smoke screen.
In the NJWG's first proposal addressing pasteurization standards, we found the following language very disturbing, and I quote, "provided any revised pasteurization process will maintain the quality of the finished product." I for one don't care what the quality of the milk is as long as it's safe. This is not a gray area, but a simple black and white one. If people are getting very, very sick from milk, then what does it matter what it tastes like? I am glad to see that terminology is not in the current resolution, and I certainly hope it doesn't find its way back in somehow.
By failing to address our resolution entitled PARA 2, the NJWG has failed Crohn's patients and the American public. The NJWG has failed in fulfilling the main objective for which that group was formed, that it would, quote, "evaluate information suggesting M. paratuberculosis is a zoonotic pathogen and assess the likelihood that animals serve as a reservoir of infection." My suggestion to you is that you delete that objective from your list because it no longer will serve as a cover to pretend you're interested in that objective. It is only a reminder to those of us who live with this disease just how much it is prioritized in the scheme of things. You have done nothing in the past sessions to address that objective, and I doubt you ever will. It is yet another lip service example.
What I have seen in the past few months is a passing of the buck on all too many issues, and this is the proverbial "hot potato." We have been very specific in the language of this resolution to specifically recommend that this research team must be comprised of researchers who have a proven track record, a "dream team," if you will, of paratuberculosis researchers. Why? Because our children's lives are at stake.
You must realize by now that many people are keenly interested in your vote today on these issues. Our organization will be following the progress of each and every one of these resolutions and be reporting that progress regularly to our membership which is growing rapidly. What has happened here today will not necessarily be covered by major networks and may not be front page headlines, but your vote and the action you take will be preserved for posterity's sake by your record. You collectively and individually will be liable in every way for those actions, legally and morally. You need to evaluate what your position may be several years from now. What position will you be in if indeed the link is proven and you did not today do everything within your power to sincerely seek the truth? That answer will be different for each of you and have more impact for some than others.
I pray not, but what if YOUR son or daughter is stricken with Crohn's? Will you say as he or she is rolled away to surgery on a gurney, not knowing how much of their gut will still be intact, not knowing whether you will get to tell them how much you love them just one more time, at that point in time, will you in good conscience be able to say, "Honey, I did the politically correct thing on October 21, 1997. I'm so sorry."
There is no doubt that this problem has existed for quite some time and many have looked the other way when dealing with it, developing the attitude that it's better not to know, like the ostrich burying its head in the sand. At this point in time it appears that the USA is being left in the dust in terms of herd certification, with the Netherlands and Australia taking their agriculture VERY seriously and addressing this problem with the aggression it warrants. It will be these countries that are able to offer and advertise that they can provide "paratuberculosis free" products, which I anticipate will be a very marketable commodity in the not too distant future. Why? Because once there is perception by the consumer that their food is unsafe, they will most definitely look to sources of food that will be safe for their children. To ignore that fact, in my opinion, does not make economic sense in the long run and is quite shortsighted.
Unfortunately, just as Johne's is on the increase, so is Crohn's disease. Coincidence?
Maybe. Maybe not. One thing is certain: The USDA, FDA and other regulatory agencies
have a duty to implement and enforce standards of food safety that affect public
health. In addition, the dairy and cattle industry likewise have a duty to do everything
within their power to be certain that their food products are safe. If it is later
proven that there is indeed a causal relationship between M. paratuberculosis and
Crohn's and these industries have neglected their responsibilities to consumers,
they WILL be facing the same
scenario as the tobacco industry. In light of that,
it would behoove industry to also take a proactive approach to this issue.
Until now it appears that the philosophy has been to follow the path of least resistance. In closing, I would like to quote Alan Kennedy, the young man whose web site was my inspiration: "Know this...The path of LEAST resistance in the past is going to become the path of MOST resistance in the future."
Source: http://www.crohns.org/governments/usahaevents/speechKaren97.htm
Contact PARA: http://www.crohns.org/contact.htm