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I just discovered your May 2005 article, “Why Did the JDRF Try to Discredit Cure Research?” That, and lingering resentment over my own futile correspondence with Van Etten and Ahearn, inspired me to dig deeper into some points you made and some reasonable suspicions your article aroused.
Neil Munro’s 1/22/05 article in National Journal “Charitable Choices” is another informative article about JDRF’s campaign to block Dr. Faustman’s research. (See Autoimmune Disease Research Foundation’s website, www.cureautoimmunity.org)
For my contribution to the cure, I’d like to see Diabetes Health and other interested media you might contact expose another facet of JDRF’s motivation and conduct so that uninformed JDRF donors can re-direct their contributions to those truly seeking a cure.
On 7/9/03, JDRF proclaimed a “vital new development in JDRF’s research strategy.” This was a radical departure from JDRF’s much ballyhooed “not-for-profit” status. Intending to mislead, JDRF announced “an increased effort (emphasis added) to partner with for-profit entities.” This has apparently been conducted for sometime by JDRF’s for-profit arm using the acronym IDDP (Industry Discovery & Development Partnerships Funding). (Easiest access to this JDRF web page is via Google: “JDRF for-profit”)
The smell of JDRF’s for-profit arm is also on the nonprofit 2004 IRS form 990 posted on JDRF’s website. Line 78a says JDRF had unrelated business income of $1,000 or more and a form 990-T was filed. However, JDRF did not disclose the for-profit information reported on form 990-T.
Since JDRF funds research for many patentable drugs to treat complications, their economic benefits from such drugs would be reported by JDRF’s for-profit arm. The source and amount of that income, which may create conflicts, should be of interest to JDRF supporters. The for-profit information might convince these people why every dollar JDRF gets is used to block, not find, the cure.
The question of expenses reported on the concealed for-profit return is just as intriguing as the income. Nonprofit (tax-exempt) entities do not pay taxes on their income from contributions so they get no tax benefit by deducting expenses. Therefore, effective tax planning requires that as many deductible expenses as required (limited only by the fertile imagination of institutional lawyers and accountants), should be reported on the for-profit arm’s return where expenses will offset some or all of the taxable income (“profit”).
So, I wonder. Did JDRF officers get more than the salaries & benefits supporters see on nonprofit JDRF’s 2004 return that are reported on JDRF’s for-profit arm’s concealed return? Did former Pres & CEO Van Etten get more than $610,740? Did Dr. Insel get more than $542,921? Or did lawyer Robert German get more than his publicly reported “0” salary? The same question exists for Chief Scientific Ofcr Dr. Robert Goldstein ($349,560) and VP Strategic Communications Bill Ahearn ($281,685).
Since this group has demonstrated capacity to pervert the goals and fervent hopes of so many who rely on JDRF, it seems reasonable to suspect yet undiscovered chicanery.
The diabetic community was simply naive to imagine there would not be a fatal conflict between JDRF’s discovery and development of partnerships, and our fruitless hope for discovery of the cure. Which “partners” influence what research should be funded?
My second point is that the purpose and function of lawyers in corporations and other institutions is widely unappreciated or misunderstood. Neil Munro’s “Charitable Choices” provides a vivid example of the duplicity, deceptive rationalization, lack of integrity and deviousness that lawyers are notorious for.
JDRF’s chairman of the board, lawyer Robert German, was asked about conflicts between researchers’ intense professional and personal rivalries along with their interests in scientific knowledge or development of products for the diabetes market and lay members’ goal for a cure. German said, “I would not tolerate anything going on, other than what’s contributing to a cure.”
Since the cause of T1D is a defective, autoreactive immune system that attacks the diabetic’s pancreatic beta cells, how about curing the disease by first finding then removing the cause?
I hope German’s future rationalizing is recorded when his diabetic son asks why German tolerated JDRF hogging research money just to blow it on research here and abroad for embryonic stem cells, islet transplantation and more recently, continuous sensors for closed-loop pumps. Although I’m not a lawyer, I can distinguish between “cure” and “treatment” without a legal opinion.
Will those great embryonic stem cells and islet transplants fare any better than the body’s own insulin producing cells against an uncured immune system defect?
How does partnering with insulin pump companies on continuous sensors ”cure” diabetes or even normalize blood glucose? Will insulin injected subcutaneously with a closed-loop pump normalize b.g. regardless of the pump program’s algorithm?
Please consider that sub-Q insulin has a duration of 3.5-4 hours versus I.V. insulin’s duration (not peak) of 50 minutes. A normal pancreas infuses insulin into the liver’s portal vein. That is what keeps blood glucose from soaring after meals. Insulin is released at the start of meals and circulates throughout the blood stream in 7 seconds. It does the same when a bolus is taken I.V. But all the sub-Q insulin doesn’t even get into the blood stream for hours and then still has to react with muscle and other tissue before blood glucose, that is elevated by then, can begin to drop.
The only thing diabetics have seen from JDRF for many years is an obscene violation of the public trust. After 36 years, billions of dollars, executives paid in excess of half a million a year, and now a real possible cure ready for human trials (that JDRF refused to fund), I’m under impressed with continued funding for fruit-fly and zebra-fish research.
Your article quotes the 4/8/05 letter from former JDRF president and CEO Peter Van Etten. In that, Van Etten said the decision not to fund research by Drs. Faustman and Nathan as well as many other regeneration proposals, “reflects a change in JDRF’s significant focus on, or ongoing support for, regeneration science.”
I suggest the reason for this change in JDRF’s funding policy was that Faustman proposed human trials. That would be a serious threat, and could cause an abrupt end, to fraudulent fund raising under the guise of “cure” research but used instead to research profitable treatment drugs for the pharmaceutical industry.
The pharmaceutical industry’s disincentive for cure research was presented in your 10/03 cover story, “Curing a profitable disease is not a good business decision.” I would add that curing is not a good business decision for professional fund raisers, either.
The only research I’ve heard of that has taken the intuitively obvious approach of trying to cure diabetes by first finding the cause, then removing the cause to see if beta cells will regenerate, and is FDA approved for human trials, is the unique research being conducted at Massachusetts General Hospital. But JDRF denied funds to support this research not just once but three times.
While Type 1 diabetics may not have a choice whether to patronize insulin and test-strip manufacturers, directing our time, effort or money to an organization that directs those resources away from a cure is idiotic if not suicidal.
I hope enough people who are truly concerned about curing diabetes will send contributions directly to the researcher of their choice. Diabetics have to stop funding the morally corrupt alliance between professional fund raisers and career researchers bent on perpetual fund raising for perpetual research that is blocking the cure.
For those interested, contributions for Dr. Faustman’s type-1 diabetes research can be so noted and sent to Massachusetts General Hospital East, c/o Ms. Lynne Murphy, Administrative Assistant, Building 149, 13th Street, Room 3601, Charlestown, MA 02129.
0 comments - Jul 1, 2006
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