Posted by Robin on February 27, 2000 at 14:31:01:
In Reply to: Re: Peaceful Protest--San Antonio posted by Therese B. on February 26, 2000 at 21:44:50:
I see your point, but 'cure over care' just isn't specific enough for me. I can see ADA taking that to mean that we want them to lobby even harder for the allocation of more diabete$ re$earch dollar$ to fund interminable albatrosses like the DPT-1, which tho it may be useful for something, parades itself under the misnomer of 'cure research'; or far-flung ventures like "immunoisolation technologies derived from NASA space flights"- all while promising islet and encapsulation technologies here on earth are left to apparently flounder unfunded.
Yes, the preservation of insulin choice is paramount to IDDT efforts, but our focus is not solely limited to animal insulin. The Insulin Dependant Diabetes Trust U.S. (IDDT U.S.) is a volunteer effort dedicated to the preservation of natural animal insulin products for those who use them; and informed choice of treatments for people with diabetes. Wherever possible, we represent the direct voice of people living with diabetes, as the consumers, in relation to treatment, care and research. Our mission has been adapted from IDDT International, which acts as an umbrella for local IDDT operations in Australia, Canada, France, Germany, Switzerland, the United Kingdom, and the United States.
In this instance, I see where two or more items have intersected. Research with porcine islets is in many respects shunned because of theoretical fears that there is something dangerous and diseased about them; bovine and porcine insulins are in many respects shunned because of theoretical (and unrealized) fears that there is something dangerous and diseased about them.
I agree with Al that we should remain open to any cure technology which demonstrates promise of actually curing us in the near term, but feel that to date encapsulated porcine islets are the one technology that have demonstrated the most promise for effectively curing diabetes in the near term. Tho I may consider a mechanical artificial pancreas (implanted pump system) useful for some, I do not consider it a cure by any stretch of the imagination. Stem cells are interesting, but I've either missed or haven't seen any evidence that we can depend on them to deliver an abundant supply of islets to us any time soon. Immune-altering therapies were getting close as far as convincing the body to accept foreign islets, but I think the halt of trials with the Biogen anti-CDL sends a strong message that it will take a long time for us to know exactly what the long term effects of such therapies will be, the adverse ones in particular. One might argue that the same holds true for porcine islet technologies given the theoretical concerns with respect to PERVs. However, I believe that we have already compiled a substantial amount of evidence to demonstrate that PERV will not adversely affect the recipients of xenografts.
So yes, my focus in the cure arena is encapsulated piggy islets, and I am committed to this type of research. I don't know that it will ultimately result in a cure for us, but I'm doggone tired of it going neglected while the bulk of funding is going to chase a number of supposed cure technologies that will take far more time and expense to prove or disprove; and will not necessarily (or in some instances, clearly won't) result in any practical gains for those of us who suffer diabetes. Likewise, I am alarmed that animal insulins have been systematically eliminated when there is no evidence to show that 'human' insulin has any clinical benefits over animal insulin for the aggregate of insulin users.
So what would that translate to in the context of an exhibit? Bearing in mind that this is something to which I've only devoted a day or two of thought:
I believe that such an exhibit would serve to promote IDDT's mission of informed choice by consumers in relation to care, research, and treatment without focusing singularly on the need that some of us have for animal insulin; and can be extended to multiple issues related to the use of animal products in diabetes care, research, and treatment.
Rather than diluting anything with multiple issues, perhaps my focus might be too focused for some people's tastes. Won't be the first time, and prolly won't be the last! :)
Robin