1. I made my phone call to the ADA, We ALL have a responsibility to do this and should do it because the ADA are suppose to ADVOCATE ON OUR BEHALF, not theirs. I will tell you what happened:
The First woman to answer the phone after I pressed 0 hung up on me after I posed the question as to why C-Peptide was not being used as an agent in Diabetes Management along with Insulin?
SHE HUNG UP ON ME.
How do I know this? I recorded the call and have it available to all.
I called again and posed the same question to a gentleman who answered and who gave me the same pat answer for everyone, "control your blood sugars". I went on to tell him that blood sugars can be controlled with "good numbers", but a person with Diabetes can still be subjected to various complications. I continued to say that Complications are a part of having Diabetes, because it is the nature of this Disease. I also told him that C-peptide has been shown to prevent as well as effectively deal with Complications related to Diabetes.
He suggested that I Email ADA at:askada@diabetes.org
The Email will go to the Research Department of ADA and will get back to YOU in 3-7 Days.
Everyone should Email them and inquire about why C-Peptide is not being supported by ADA as well as encouraged.

Posted at 2:58PM on Apr 12th 2007 by BetterCell

2. I hope people will take time to read my reply to yesterday's post about ADA and c-peptide. I work for ADA, and I was the "Matt P" who talked to Allie a week or two ago.

I certainly wouldn't discourage you from calling our 800-DIABETES number, but I think you should consider why we have an 800 number and what the staff of our Call Center are trained to do. Their primary goal is to help people with basic questions about taking care of diabetes. They have very little information about what research is going on in diabetes, because that information does not yet have any relevance for the vast majority of people who need the help of our Call Center. Callers are primarily concerned about nutrition, help with paying for medications,and information about complications. The staff does try to take care of callers who want to give guidance to ADA on things like research and legislative priorities, but their primary focus is on providing immediate, direct advice about diabetes management to people who can't get it any other way.

Again, please read my other reply. Guys, diabetes is awful, everyone who works at ADA thinks so and of course so do all of you. We would all sincerely like to see effective treatments come into our hands immediately, but I'm afraid that there is almost nothing ADA can do to change the basic nature of the research process or the drug approval process. Despite recent promising research results regarding c-peptide, there's no way the FDA would approve it as a therapy for diabetes complications until more research is done to precisely define what it does and how well and how safely it does it.

Could industry do more? Probably, although we don't know exactly what they're doing now---please see my other post. We live in free society where people and companies don't always have to tell you what they're doing. If you want my pledge to talk to people at Lilly and Novo about the potential promise of c-peptide, you have it. By all means, call them yourself. I'm afraid our Call Center staff, who do an incredible job with handling a huge number of calls from a lot of desperate people, aren't going to be able to do much to address an issue that is still at the research stage.

Sincerely,

Matt

Posted at 6:44PM on Apr 12th 2007 by Matt Petersen

3. You should note that its only been rDNA-origin insulin purchased since 1983. Prior to that, we used insulin derived from animal pancreases (mainly pigs and to a lesser extent cows). I can't give you all of the details, but I would say it amounted to taking all of the animal pancreases and grinding them up in a type of solution, then "purifying" the resulting insulin with filters, adding preservatives, and standardizing the volume per unit of liquid. But I don't think we can definitively say that the early insulin formulations did not have c-peptide because of the manner in which it was made. However, the decision to remove the c-peptide chain from proinsulin was a conscious decision made by the folks at Eli Lilly and Company and Novo Nordisk when they introduced rDNA-origin synthetic human insulin!

Posted at 7:30PM on Apr 12th 2007 by Scott

4. "The staff does try to take care of callers who want to give guidance to ADA on things like research and legislative priorities, but their primary focus is on providing immediate, direct advice about diabetes management to people who can't get it any other way".
This management that you refer to Matt can be applied on how best to prevent and treat Complications that arise from Diabetes, independent of Hyperglycemia(which of-course can exacerbate and contribute to the Complications). We in the Diabetes Community, who are Advocates are very informed and educated regarding Diabetes.
It is the responsibility of Organizations such as ADA and JDRF to provide not only information that is relevant(Complications associated with Diabetes is), but to earmark Grant monies that will go into the prevention and treatment of these Complications. The ADA should not be a Diabetes Organization that answers to itself rather than the Community it is suppose to represent.
There is more involved with Diabetes than knowing what medications to take and what foods to eat!!
The C-peptide Studies have been going on since the 1980's if not before. Why was Symalin made available not too long ago and not C-Peptide. The answer probably lies in the support the ADA has given to the Pharmaceutical company since there is a market to be made profitable from its use by those with T1DM and IRD(aka Type 2 Diabetes). We both know that Lifestyle change is the Best Medicine for both Prevention and Treatment of those with IRD, while those of us with T1DM already encompass the Healthy Life-Style.
Please keep your word and have ADA call Lilly and Novo-Nordisk regarding the availability of C-Peptide for clinical use and why it has not been promoted when positive studies related to it have been available for at least the past 27 years.

Posted at 1:31AM on Apr 13th 2007 by BetterCell