Posted by Robin Harrison on May 02, 1998 at 19:40:39:
In Reply to: Re: Diabetes Research Working Group posted by Addie Parker on May 01, 1998 at 18:42:06:
Addie and MAR,
Whether there has been any improvement in ADA and JDF as "our" advocates is a tough question. I guess I should feel good that JDF has a monopoly on Type I subgroup appointments rather than diabetes research decision making and prioritization being "a completely closed shop" within the NIH/NIDDK. On the other hand, I tend to wonder if JDF is more mired in politics, cronyism, and bureaucratic thinking than the NIH itself.
Looking over the roster, I may have been mistaken that ADA is taking an active role in DRWG. I did meet an ADA honcho who is not listed, but I only see their Government Relations Committee Chairman, Stephen Smith, listed on the DRWG roster. Personally, I've never considered the ADA to be advocates for the consumer. Their tack seems to be rallying consumers to ask for more funding, period. Sorta leaves me with the impression that they do not consider consumers to have the wherewithall to understand more focused issues- leave that to all the professional members that they also serve...
I don't want to give a wrong impression tho. For the most part, I believe that the research priorities identified by the T1 subgroup were fairly on target and representative of what the consumer wants and needs. Major goals in Type 1 diabetes were 1) understanding and prevention; 2) developing methods to replace beta cell function- transplantation (islets, cloned cells), neogenesis, and bio-mechanical methods. Thankfully, bio-mechanical stuff appeared to be the least appreciated option.
Robin