Posted by the runna on December 23, 1998 at 01:57:16:
In Reply to: Re: Congratulations! posted by Sue Huson on December 22, 1998 at 13:18:27:
Hello Sue, its good to know you guys are alive and well in London, and no I haven't forgotton about my promised return visit to White Oaks elementary. It is with great pleasure that I will return to address the kids again. One of the most personally rewarding facets of the trip was indeed getting into the schools and sharing with and inspiring the children. In fact I am currently looking for a local London company that would like to co-sponsor a speaking tour extending to all the schools throughout the London municipality. Maybe you can help me?
Anyways, responding to your earlier post and referring back to the Toronto Star article by Kelly Touvall, in which it qouted me as saying that I had found the diabetic community to be really quite apathetic. I must first define at the outset what I take the "diabetic community" to be. To me it is inclusive of not only diabetics and their families, but also the organizations and affiliations that represent us, aswell as our doctors, the pharma-industry, government as the largest funder of diabetic research, and also as importantly the researchers.
Having said this let me share with you my experiences. Currently, as I witnessed throughout my run, there is a story unfolding within the diabetic community in Canada. Many diabetics are puzzled, bewildered, and disgruntled as to why 77 years after the discovery of Insulin we still haven't made any progressive developments toward a cure. Let me proceed to tell you why. An insulin industry has developed around this disease involving huge drug conglomerates like Eli Lilly, and Novo-Nordisk. Companies who in no uncertain terms profit off the disease of others, off our disease. I can dismiss to a point their agenda as they are corporate entities with profit interests. What I can't understand is how diabetic advocacy groups like the CDA- who represent us, and the Government, the largest funder of diabetes research, plays the game with them. Dumping hundreds of millions of dollars into insulin based research and/or the effects of diabetes. Ask a man who is blind or impotent, missing his legs, or is completely incapacitated on a kidney dialysis machine if you need millions to determine the effects of this disease.
What has distressed me even more is the ignorance of the researchers themselves, complying with these types of research initiatives. Initially to drum up support and awareness for the run I made trips, sent letters and called upon the banting and best medical research centre and esteemed doctors like Bernard Zinman at Mount Sinai. (a past doctor of mine). Much to my surprise I didn't even recieve a response let alone any bonified interest. It seems Zinman doesn't need my funding and is quite happily funded by others to keep on doing his sociological studies that continue to give him immediate results and credence in the research world. A cure, or my $money$ to that end, for that matter is just not something he isn't interested in chasing.
Something even more saddening then this is the diabetics who have espoused this pathology. I was met by diabetic after diabetic who insisted in telling me that we would not find a cure nor did they need one as they were doing fine on their insulin program. Well to me that was an inappropriate response from any diabetic. For two reasons: (1) Every diabetic thinks they are doing great before complications hit them. And as we all know - complications as sinister as they are may not strike until 15-25 years after diagnosis. and (2) Many of those that hit me with this response were diagnosed at 30 or 40 and had lived without complications to 50 or 55. But what about those 18 month year old babies who for decades of needles and routine and juggling their metabolism, food, stress and insulin, will still suffer complications.
Sue, as much as I pray and hope and rejoice in teeming up with people such as yourself and your family to fight this disease, their is still an apathy to be fought.
Truly your friend and ally, Ayden the runna