Irreconcilable Differences - I'm Divorcing the ADA
Posted Apr 11th 2007 6:03AM by Allie Beatty
Filed under: Type 1, Type 2, Childhood, Adult Onset, Lifestyle, Drugs, Research, Fundraisers, Opinion
The Wall Street Journal posted an interesting story about a man who needed a drug to treat his ALS or Lou Gehrig's disease. He could not get the funding for a large scale trial to approve the drug. I empathize, completely! See that picture of the Hulk? That's me. I'm angry. You won't like me when I'm angry.
As a type 1 diabetic, my concern for improving the lives of people affected by diabetes involves preventing and reversing the complications associated with the disease. The American Diabetes Association states the same somewhere in their mission statement. Ok ADA, put MY money where YOUR 501(C)3 is!!
When I called the American Diabetes Association and shared my excitement for the C-peptide treatment in human trials (in Sweden) reversing type 1 diabetic complications - I was floored when I heard their response.
Allie B: Can the American Diabetes Association please encourage a big pharmaceutical company to sponsor these trials here in the United States? The results in Sweden have conclusively shown reversal of complications associated with type 1 diabetes.
Mat P at the American Diabetes Association: The topic of C-peptide is very sexy in scientific forums. BUT - we don't like to tell big pharmaceutical companies what to do with their money because we don't like them to tell us what to do with ours.
Allie B (in my head): WHAT THE F%^&*)(*&^%$F do you DO as an organization to improve the lives of people affected by diabetes if you are not going to push for trials to prevent and arrest complications associated with the disease?
I'm afraid the American Diabetes Association and I do not share the same goals any longer. It was a long marriage, over 21 years - but I want a divorce. The largest diabetic organization in the United States is not willing to assist in getting a trial underway to prevent and reverse complications that could affect 2 million type 1 diabetics and between 2 and 4 million type 2 diabetics injecting insulin (without C-Peptide).
I didn't feel this way until I realized how disconnected their perception of diabetes is from the reality of the disease. What do you think?
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1. The ADA is supposed to represent the interests, welfare and research to those with Diabetes. Unfortunately, what your post has described is the ADA representing THEIR OWN interests, that of $$ and power.
What crap!!
Another example of Hypocrisy by a Bureaucratic organization that probably gets "kick backs" from large pharmaceutical companies by promoting research and marketing of drugs only geared to those with IRD(aka Type 2 Diabetes).
Clinical studies show that C-peptide administration in type 1 diabetes patients, who lack the peptide, results in amelioration of diabetes-induced renal and nerve dysfunction.
There is a large Bibliography of research studies by investigators that show the benefit of using C-peptide along with insulin for both the bio-dynamics of said medication and the arresting of various organ/tissue complications created by T1DM.
It is just logical and ethical to have and make C-Peptide available to those with T1DM. Physicians are always talking about the importance of Good Management in T1DM and the Responsibility of those w/Diabetes to do everything possible to "control their Illness". Good Management is not only about controlling bs values, it is also vital to control ensuing Complications that can and do develop as a result of the Disease.
It is my feeling, that complications can develop as a result of not only erratic bs levels, but the longevity of the Disease itself independent of Glucose values.
It is time for those of us with T1DM to voice our feelings and support the availability of C-Peptide as vital to our needs.
Posted at 8:47AM on Apr 11th 2007 by BetterCell