Actually, the policy at JDRF's involvement in private companies was featured in The Wall Street Journal back in 2007 (see http://www.jdrf.org/files/Research/Industry/WSJ_1_26_07.indd.pdf for details), and was a function of former CEO Arnold Donald's policy to make investments to advance diabetes research. More detail is available on the JDRF website from an interview with him (see http://www.jdrf.org/files/About_JDRF/AD_Interview_DCU_1106.pdf). Details are also disclosed in the organization's annual report, though this won't be included until the 2008 report comes out next year.
Thanks Scott for providing background to the basic idea of a not for profit (JDRF) funding for-profit pharmaceuticals. Everyone go read the links - I'll wait ....
... Cool idea huh?
I think it is a great idea to try to bridge the academic work to real world of approved therapy. I look at it like this: Lots of mice get cured - maybe this will help move those cures to people.
One of the links Scott provided says:
Every donor or volunteer should feel that they are totally connected to JDRF. They should feel that they are proactively communicated with. That their connection to type I is understood by JDRF. They should be treated with integrity and caring and know that their opinions count. It doesn't mean we are always going to do exactly what a given volunteer's opinion is, but if they understand why we’ve done something, even if they would do it differently, it creates the basis of the possibility of alignment.I agree.
Earlier the articles says," My personal analogy again is the single mom barely making ends meet, and she's scraping every penny she can to give to JDRF so that her child can be cured, and we have to honor that penny like it’s the hardest earned penny on the face of the earth."
IDDP projects are valuable. As such they must pass the hardest earned penny of the face of the earth test. We all should have the opportunity to find out how each JDRF IDDP investment of hard earned pennies is honorably aliened with a potential cure. The way to do that is transparency.
I am sure JDRF has some real smart people working on the IDDP program. Heck I have even talked with some of them. So OK maybe they weren't so smart to get on phone call with me but anyway.... Smart people still need to explain what they are up to. The sign of a real smart person is their ability to explain complex stuff in simple terms.
To help make my point here is an analogy that will more than likely do little but prove I am not such a smart guy. One of the reason the financial industry crashed and burned this fall was credit risk swaps. These are instruments of spectacular complexity. Congress decided that since they are only available to big smart firms, like say AIG, that they, Congress, didn't need to regulate the market for swaps. The idea was that the super smart guys buying and selling the things would be a balance each other and the market would be self regulating.
That didn't work out real well.
In part because a free market assumes there is information. But nobody was reporting what their position in swaps was. Not knowing AIG was awash in swap risks the market couldn't accurately price AIG. In case you missed it We the People are on the hook for a few hundred billion in loans to the super smart guys at AIG.
The moral of the story is that information is critical.
I am all for IDDP projects. In the interest of respecting hardest earned penny of the face of the earth the single mom as well as the rest of us should have some idea of how many pennies are involved, what the the pennies are trying to achieve and if it is wildly successful how will JDRF get the pennies back.
In the specific case in point, I don't think it is asking too much to know if Osiris signing a potentially billion dollar deal for a product an IDDP investment was helping into trials counts at a milestone for repayment. If so, then JDRF can do another similar deal with someone else as another step on the path to a cure.