Posted by Mark Davies on October 30, 1998 at 09:11:10:
In Reply to: Re: ADA Advocate Alert Received Today posted by Sandra Silvestri on October 29, 1998 at 18:54:38:
Got a call from the ADA last night - wanted me to become a member again, and went through the litany of benefits to help me deal with "my" diabetes. I finally managed to break into the spiel, and explained that no, I wasn't interested, and it was my 13 year-old son who had type 1, and that I would only donate to groups that seemed seriously interested in pursuing a cure. The caller thanked me for my time, and then in the bizarre twist, said "and give our best to your wife".
The reason that this was so odd (and set off my paranoia alarm) is that my wife Mary had not been mentioned in the phone conversation up to this point - but she did have a letter published in Forecast magazine a while back that poured out her heart on her feelings about dealing with Stephen's diabetes. This was our first inkling on some of the politics of the different groups such as the ADA, and how some diabetics and parents don't want to hear anything other than standard line (a.k.a. "Control Your Diabetes for Life"). Forecast sent us the letters that agreed with Mary (and she received many letters and phone calls directly). They printed the ones that were sent to them that said how all we needed to do was to better educate ourselves and then all would be just dandy. That pretty much ended my support of the ADA.
Please excuse the somewhat off-topic ramble. One of the people that contacted us was Sandra, and I wanted to thank her publicly for alerting us in advance what she knew was coming our way.
I'm not quite paranoid enough (at least, not yet) to believe that the drug companies are squelching cure research - but I do believe that research groups are more likely to fund ongoing, "safe" research paths that continue their jobs than to fund risky new paths. The ADA helps drive that bus ;-(
Mark Davies