Posted by Sandy Donchess on February 18, 1999 at 20:40:29:
In Reply to: Diabetes with a capital "D" posted by Ellen on February 18, 1999 at 19:35:43:
I feel slighted and pooh-poohed and frustrated and disgruntled, as I know you do. The issues here are funding and attention, I think. And interest groups/advocacy groups and strong beliefs and religion. There are lots of issues here, actually. Mary had some interesting observations and comments about political activism, and I wish others would express their opinions, comments and feelings about them.
Should diabetes be capitalized? Personally, I don't care whether it is or not. Certainly, Parkinson's and Alzheimer's are named after someone, so it is the name (a proper noun) that is capitalized. AIDS is an acronym, so certainly should be capitalized. Asthma isn't; rheumatoid arthritis/arthritis isn't; cancer isn't, unless it's a specific type that was named after a person; ADHD is, because it's an acronym. But all of that is just Chicago style-manual grammar.
To me, the problem is that the NIH isn't interested in investing many $ in cure research, overall, much less in exploring methods other than those of Captain Harlan and DRI. Don't get me wrong, I'm not at all booming them for what they are working on. I've spoken with them and corresponded with them. They are excited because they believe in what they are doing and want to see success because they want a CURE. My point is that other technologies, such as those involving encapsulation, are getting virtually NO end of the stick. Granted, the NIH wants to fund stem cell research, but many others (obviously) don't want this. The NIH should be actively pursuing other avenues for a cure. Or a better treatment option; call it what you will. Something that ensures normal glucose levels.
Those of us who are diabetic and/or have kids with diabetes differ in our opinions. Lots of people are anxious to see MiniMed develop an artifical pancreas; that doesn't ring my chimes at all. I want real islets. But I understand that incremental steps and better daily management are needed to make sure enough of us live long enough and healthily enough to continue the cure push. My A1Cs are pretty darn good, but my son's aren't - and that scares me (especially after the CWD forum with Dr. Brink, which just reinforced other studies I've read).
From what I've read, Shalala hasn't yet responded to the letter the Congress folks sent her on stem cell research, so it will not be easy to obtain a copy of it. However, press releases/news reports have named some of the signers. Maybe THEY can be contacted and appealed to for a copy of the letter (with signers' names). Maybe the folks who have issued the press releases/news reports have a copy and can be appealed to.
All I know is that I want a cure for my son. I have no problem using pigs to do it. I have no problem using stem cells to do it. Others do, and that's fine with me; I respect their right to decide and choose. But why can't my son and I have the same respect and choices?