Posted by Dianne Terry on June 26, 1998 at 22:59:38:
In Reply to: Re: Xenotransplant Action Plan posted by Steve Santen on June 26, 1998 at 18:09:06:
Sounds as though some of you think we are free now. Every minute of every day, we are in the grasp of diabetes and you are whining about archiving and monitoring - IF WE GET ISLETS! And we have just read and written about how we are convinced that Dr. Varmus and Dr. Phillip Gorden, while limited in their working knowledge of how we live, plan to delay what appears to us to be the ANSWER to diabetes.
They were not at the Xeno Workshop in March in NY. But I felt the participants there were not waiting to be lead by them. Who on this forum said that not one cure has come from NIH research? Maybe we should think about that and be releaved. Within 20 minutes of my home there are JDF et al researchers who take the money and cheerfully say 25 years. But there are also those who are struggling to break out of that mind-set. Hopefully, the former doctor and his ilk will stay in their labs, working feaverishly until they retire, and those sparkling individuals with the vision and drive and desire to serve, some of whom I saw in New York, will work around them for the success of Xenotransplantation for all possible diseases.
Someone else said Varmus and friends don't care about us or if we ever get rid of our disease. It feels that way and if that is true, all the industries fueled by diseases are in the same boat. They hold the purse for the researchers, and the researchers who get funding for unproductive, irrelevant, make-work research know the it is the Varmuses of the world they have to impress - not us. I think this is still called 'you scratch my back - I'll scratch yours' There - their circle is complete and these circles are in every segment of our society. Do they want to be burdened with any disease group? Not very likely. Sometimes though, they have to let us in and be present for two hours so the advocates for diabetes and other killer conditions can tell them how profoundly put out we are with their efforts to address our needs. Then after patronizing us - they wash their hands and go back to looking after their friends. Think about it. We would have been relieved if Varmus and Friends had said the things we want to hear. Then we would have gone away and they would have found a way to do the safe, unproductive research that gets them tenure and retirement.
I am convinced, that the policy and procedures for Xeno and not just for diabetes, will be here in less than five years. And yes, I will comply with the achiving and data collection and so will my friends and family that are worthy of my attention. You see we will be helping those who come after us - in case you forgot. Pioneers in this cause, if you will. Would you refuse to at least make an effort at compliance for the sake of this next major step in medicine; for the sake of your family members whom you hold dear; for yourself,- so you could spend the money you might save from our supplies on something of your choice? Now that would be a freedom I could relate to. What would you think of a cousin, who wouldn't comply, so he doesn't get the new heart? You would think he was truly limited and that he never deserved the chance to begin with. You'd be bragging to your friends, "IF THAT WERE ME I'D........." Well apparently you wouldn't.
Going to a vet, to see if my snout were developing in the proper manner would be a treat!! Maybe the cat and the dog will let me go with them - like a family outing!
Please don't compare yourself to any other disease group because we are different. The archiving and data collection is not aimed just at us. If you want do be able to go to a drive-through lab to get a cut-rate shot of islets, run by some quick scam artist - go for it. You won't be getting any follow-up there, but apparently some of you don't want it.
Think this over. How badly do you want to exchange your current lack of freedon due to diabetes with another slight restriction in your life. You would be surprised how much of your private data is already available to anyone who wants to make it their business.
This is the mentality that is usually displayed by the animal activists who are not in favour of common sense progess. Keep complaining about something that has not yet been requested of you - and you may never have to worry about getting islets. You can go and live on the park bench with the dope that had no intention of modifying his life-style so he could get a heart by -pass because he had his right to continue to smoke. Surgeons no longer have to deal with these fools and their rights
Have a conference with yourself. Get your priorities sorted out and decide what you and your immediate loved ones can live with in this regard. Warning. Don't be humming and hawing in line in front of me, because I've decided.