Posted by Sandy D. on January 06, 1998 at 23:59:41:
In Reply to: NIH xenotransplantation forum posted by Therese Bujold on January 06, 1998 at 22:33:40:
Therese,
I definitely think so, although I may be naive. At the very least, I could see us sending emails to the contact person and requesting that they be passed along to the "principals." I have been thinking about an outline for my email, and I think the following points should be made:
- Current number of Type 1 diabetics and projections for near-term future (lots more); studies showing/implying that many Type 2s are actually Type 1s, or, at least, have to be medically treated as Type 1s.
- Current cost of treatment; cost of treating complications, etc. Money talks.
- Although the DCCT (?) showed that tight glucose control helped delay or possibly prevent long-term complications, delays are merely a matter of time and many diabetics, despite tight glucose control, suffer complications anyway. This, hopefully, would neutralize some of the "if you would only do what you are supposed to..." objections.
- Islet cell encapsulation works, but clinical trials are needed - without immunosuppressant drugs.
- Retroviruses - I got the impression from reading Al Gordon's and others' notes about the JDF/NASA conference that this was not really a concern of the researchers. I saw an article (can't remember where) today that said the government would hold xenotransplantation to a very high standard so that viruses would not be introduced - AIDS was mentioned. More ammo addressing this would be very useful.
- Personal narratives of the problems from people affected by diabetes: those who have it, parents/siblings/relatives of those who have it. School problems, day-care problems, police problems, etc.
- The fact that, while islet cell encapsulation doesn't address the autoimmune components, it would help or save those who currently have diabetes. Prevention studies and trials could then be funded more heavily. It could "buy time," so to speak, until the causatives can be dealt with.
It's late and I'm really slowing down now. Would it be better to send individual emails, or would it be more effective if TIF sent a "united" email, with as many names and addresses as possible in signature? I don't know... just ideas here.
Thanks for bringing this up. It gives me hope that a lot of folks are taking islet cell encapsulation VERY seriously, and want to go forward soon.