Posted by Sue Huson on December 05, 1997 at 21:28:15:
In Reply to: Kudos to JDF posted by Renee on December 05, 1997 at 17:16:08:
As I mentioned earlier, Dr. Mulvihill called me up a few weeks ago in response to the last letter I sent him. He called mainly to tell me about the changes that were coming to JDF, which are now publicly posted. He however, also, went on at length about what you have talked about here - how efficient the operation is. Unfortunately, that has never been the issue as far as I was concerned. I have only ever written Mulvihill to ask for a fair share of funding to go to islet research and to express my concerns regarding the peer review process. This is the letter I sent him, dated October 24, after our unfortunate encounter with the police at the JDF Walk for a Cure. By the way, he said he thought JDF Canada had over-reacted calling in the cops. I'd say that's an understatement.
"Dear Dr. Mulvihill,
Please find enclosed the 24 signatures we gathered at the London Walk for a Cure. Although the signatures are few, they represent 24 families who have put their trust in JDF to deliver a cure for someone they love. I know you have received a letter from Keith and Stacey Harmis regarding the unfortunate course of events at the London Walk. I will attach the letter I sent to my former pharmacist at Shoppers' Drug Mart, the people who sponsor the Canadian walks. This will allow you to understand the day from our perspective.
Keith and Stacey have mentioned that we should expect some exciting announcements from JDF in the near future. In your letter to me, dated January 24, you state, "I believe JDFI will increase its commitment to applied research in the maintenance of eugylcemia... In this regard, you may be pleased to know that preliminary contacts have been made with a number of laboratories and private companies who have interest in these areas of research."
I sincerely hope that the upcoming announcements will involve major funding for the researchers doing promising work with islet transplantation, rather than the ones working to create the bio-electric and mechanical cures that you also referred to in your letter. I speak for many people when I say that we want to see islet transplantation receive serious support and funding, so that we will know, once and for all, if it is going to work.
On Wednesday, I attended a lecture at the Robarts Research Institute given by Dr. Terry Delovitch. Dr. Delovitch is the Director of the Autoimmunity/Diabetes Group that received 4.9 million dollars last year from the JDF and the Medical Research Council. ... Unfortunately, his research does not hold out much hope for a cure in the near future, although he strongly believes one is achievable in the next 20 years.
A couple of things disturbed me when I spoke with Dr. Delovitch following his lecture. I have expressed to you previously my concern with the present peer review system. Dr. Delovitch, who has received huge amounts of funding from JDF, told me that he sits on your Medical Review Council. I find it hard to understand how a researcher who receives funding from JDF can be one of the people responsible for deciding who gets money and who doesn't. Obviously, he wouldn't be reviewing his own research, but he told me that being at a JDF function is like being at a family gathering. Wouldn't the Council be far more likely to fund researchers who are part of the big happy family, than those who are not?
Dr. Delovitch also stated, in no uncertain terms, that he didn't believe encapsulated pig islet transplantation was going to deliver a cure. However, he did not give me any scientific explanation for why he felt this way. You already know of the misinformation Dr. Dosch was giving people regarding islet transplantation. Could these attitudes towards new therapies be part of the reason this very promising research has received so little attention to date from JDF? Could it be that the family is happy funding its own members and not open to new, exciting ventures? Islet transplantation may not fit Dr. Delovitch's definition of a cure, but it still holds the very real possibility of stopping the endless injections, fluctuating blood sugars, daily blood testing and inevitable complications that are such a horrendous ordeal for millions of people world-wide.
I hope your coming announcements will show that JDF has been able to move beyond any peer review biases that may have existed previously. We're all anxiously waiting to hear your news. Many of us do not have another 20 years to wait."
In his phone call, Dr. Mulvihill did say that that JDF was going to be deciding which areas of research to fund, rather than having the researchers continue to choose the direction that research would take. This could be good. Just the fact that they are making a big noise about all these changes, means change really and truly was needed. Maybe we weren't all so off the wall after all. Looking forward, Al, to hearing your report.