Posted by Sandy Donchess on February 25, 1999 at 23:05:49:
In Reply to: DRWG Report posted by Sandy Donchess on February 25, 1999 at 12:20:43:
Now that I’ve read the DRWG summary, I want to see the full report even more. I understand it’s well over 100 pages. I want to see the details.
I went through the summary with a highlighter, and wanted to muse. Sorry for burdening everyone with my ponderings. .
Things I liked:
- The word “cure” was used several times
- The summary was written with sensitivity, stressing the human costs firsts, then the health/economic ones
- It calls for much more collaboration among researchers
- It calls for lots more money – I particularly liked the bullet item that says federal investment in diabetes research “represents only about $30 per person affected with diabetes per year – less than two people might spend for a movie and a pizza.”
- It is accurate in terms of health/economic dollar costs
- It calls for “centers” to be developed for general and specific research efforts
- It calls for clinical trials to be put on the fast-track
Things I didn’t like:
- There was NO mention of encapsulation/immunobarriers (hopefully this is in the full report)
- There was NO mention of pig islets as a plentiful supply of islets (hopefully this is in the full report)
- Because of the above things alone, it sounds as if encapsulation and xeno are completely discounted. I hope the full report will mention them. I cannot believe that the DRWG would not mention immunobarriers at all in the summary. A number of researchers, including Chris Newgard (who is a member of the DRWG), are working on encapsulation. I think immunobarriers should, at the very least, have been given a place in this summary as a treatment option that should be explored. Same thing for pig islets.
- Type 1 research seemed to take an extremely back-burner place, overall. I guess I understand that because our numbers are small compared to Type 2, but I still don’t like it.
- It says the NIH should fund “developing technologies that enable administration of insulin by routes other than injection.” I don’t think the NIH needs to fund inhalable insulin. The companies developing that are very close to FDA approval. Besides, insulin delivery isn’t the major problem with diabetes, in my opinion.However, I know that lots of folks really, really want this; my son would also like to be able to take insulin other than through a needle.
- It calls for “immediate review of the research program to develop mechanical approaches to insulin replacement.” I suspect this is related to the implantable insulin pump that MiniMed envisions, or something like it. I don’t care at all for this, but I know other folks do . I just don’t believe that anything can match insulin delivery like islets. Especially since they do double duty as glucose sensors.
- It calls for the increase of “studies of how to implement effectively the principles of the Diabetes Control and Complications Trial (DCCT) in children with Type 1 diabetes is an effort to improve glucose control and reduce the complications of disease.” Sounds like more behavioral claptrap to me. Maybe the full report will show that the thrust is to do different stuff with testing/dosing, but I doubt it. No one knows enough about the effects of adrenal hormones, growth hormones and sex hormones to be able to tell someone how much insulin they should take. And nothing in the summary talked about factors such as these. Again, I want to see the full report.
- There was quite a lot of attention given to “behavioral” research to make/help folks with diabetes adhere to/comply with treatment regimens. I really hated this. It says NIH should fund/develop research “to measure psychosocial and behavioral factors in diabetes.” I realize that most of this stuff is related to the overweight/obesity issues in Type 2, but it still angers me that Type 1 was not mentioned specifically, and therefore was “lumped” into this. Once again, the current treatment is the issue. Who wouldn’t have problems with it? Especially children.
Speaking for my son and myself, I would say that the major problems with current Type 1 diabetes treatment are due to the fact that we aren’t masochists. We don’t like to stick ourselves to check bgs and deliver insulin. We don’t like to eat at set times. We don’t like to eat when we’re not hungry or not eat when we are or eat more than we want to or less than we want to. We don’t like having to time everything we do to follow the insulin peaks. We don’t like having to drink Sunny D to avoid a low during a basketball game. We don’t like having to check 2 or 3 or 4 a.m. bgs to figure out why our numbers are high in the morning. We don’t like functioning like pancreases. The truth is that even if you DO comply/adhere, there is no guarantee that you won’t have complications. Be good, and MAYBE you’ll be OK? Doesn’t wash.
My son doesn’t like feeling that he is different from everyone else in his school. He is the only kid with diabetes there this year. He wants to be able to spend the night with a friend without having to worry about doing bg tests, taking insulin, figuring out what he can and can’t eat – and when he does all that. He wants to have fun, not worry if I’m going to call his friend’s parents to check on him. I don’t tell him my opinions about a lot of things. I try to stress that he CAN do what needs to be done. But he sums it up very well, I think: “Diabetes sucks.”