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Is a "closed-loop" CGM and Pump a Cure?

Discussion in 'Stickies' started by Sarah Maddie's Mom, Jan 6, 2010.

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Is a "closed-loop" system a cure?

Poll closed May 6, 2010.
  1. Yes

    4 vote(s)
    1.7%
  2. No

    224 vote(s)
    96.1%
  3. I don't know

    5 vote(s)
    2.1%
  1. wilf

    wilf Approved members

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    Funding from donations should flow ONLY to researchers working on a cure.

    The pharmaceutical industry has a vested interest in keeping D around as a manageable condition that conflicts with finding a cure, and should not be getting any money from donations in my opinion.
     
  2. Flutterby

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    And when we parents raise money for a cure, we sure are not raising money so JDRF can give to a FOR PROFIT company to make MORE money off of it.
     
  3. Jacob'sDad

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    Yeah it kind of leaves a bad taste in my mouth about doing the JDRF walk next month. Calling it the "Walk to Cure Diabetes", when they are funding something that is not a cure by any stretch of the imagination, is either an outright lie, or only a partial truth. We may just skip it. I'll have to think about it.
     
  4. Christopher

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    If people feel that strongly then why not just stop giving money to them? Or maybe you have...
     
  5. buggle

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    We can give our donations *directly* to the research project we want to support. That way, there's no uncertainty about where the money is going or how it's being used.
     
  6. Toni

    Toni Banned

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    The point re J&J having ample streams of income is well taken. And that individual researchers will need the funds more. But if JDRF is entering into a partnership with J&J on the AP, won't JDRF also profit financially? Which would leave more money in the coffers to fund research? I did not think JDRF funding was a donation, but that JDRF would share in the profits on this venture; I would be absolutely against outright donation.
     
  7. Darryl

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    A couple of things that would be nice to know:

    If products are ultimately designed, patented, and sold for a profit, does the JDRF get any financial benefit that they can reinvest into research, or is this just a "grant"?

    Why is J&J singled out for the receipt of the $8M in JDRF funding? Why not Minimed, Dexcom, Insulet, ....?

    I've been looking on the JDRF website and have not found anything there. Does anyone know?
     
  8. Sarah Maddie's Mom

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    Darryl, this is a start http://www.jdrf.org/index.cfm?page_id=103249 (though you've probably seen it) and Badshoe has written about it on his blog - need to find the link, I think he wrote about it in 2007

    I agree. Simply not enough transparency or information about these ventures.:rolleyes:
     
  9. Sarah Maddie's Mom

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    I'd like to suggest, that if a spokesperson for JDRF were to come to the forum and engage the parents who have concerns and questions about the JDRF/J&J partnership and the "AP" project, it would go a long way toward advancing our understanding and how we share and discuss this news with the friends and family members to whom we turn when organizing our JDRF donation drives.
     
  10. Christopher

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    I understand people's passion about this topic, but most companies/organizations are not in the business of coming on Internet forums and explaining or justifying their business decisions. It will be interesting to see what happens here.
     
  11. WestinsMom

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    Well, they sure don't mind monitoring it. :D

    I did go over a post something on the forum over at JDRF...no surprise that I haven't gotten much but pro JDRF comments (other than the few that I know that went to look at it).
     
  12. Flutterby

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    MOST companies are not. BUT JDRF obviously knows that we are discussing it.. didn't someone already show up and discuss things about the AP, but our questions went unanswered. :rolleyes:
     
  13. Christopher

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    Yes, that was Aaron K, who said he was a researcher working on the AP project. I thought it was nice of him to stop by but I would hope he is spending most of his time working on his research. :cwds:
     
  14. Darryl

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    I don't know whether Aaron or anyone else from the JDRF would get involved in this format of discussion, as the JDRF is a large organization with many constituents, and they likely would restrict their public communication on sensitive issues to forums such as their own website.

    Perhaps Jeff could step in, contact the JDRF and J&J, and get some answers to questions that would help us understand all sides of the situation..




    I'll start a list of questions I can think of. Feel free to quote and add any more.
    • Why is J&J the apparant sole beneficiary of $8M in JDRF funds for closed loop development?
    • Why is J&J a recipient at all, given that they have ample resources to design the closed loop software if they wanted to - vs. allocating the $8M to projects that are consistent with the JDRF's fundraising mission statement?
    • Will the JDRF exclusive partnership with J&J lock out other companies from access to patents or proprietary technology developed using JDRF funds - or is J&J being set up to be the only provider of closed loop systems?
    • Is the JDRF funding any research on improved sensors - since the closed loop system is impractical and will not pass FDA human testing without improved sensors?
     
  15. Christopher

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    I would disagree that a device that could improve the lives of some people with diabetes is "impractical". I am not sure what you mean by "FDA human testing" but if you are talking about clinical trials, how would it not "pass" them?
     
  16. Jordansmom

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    LOL. You have your DD use any of the current CGMS sensors and then get back to those of us who have a CGMS about whether or not you think automatic insulin dosing by a closed loop system is impractical (to put it mildly) with current sensor technology.

    Doesn't the FDA require CGMS to be marketed in a way that explains that the technology should never be used to dose insulin without confirming readings with a finger stick? Doesn't that tell you that currently sensors aren't accurate enough to hand over dosing or pump shutoff? Regardless of any advancement in the "artificial pancreas", it absolutely remains impractical without improved sensors.

    Did the thousands of families who Walked for a Cure for JDRF this summer do it to improve Dexcom sensors?
     
  17. Christopher

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    Have you contacted the JDRF to voice your concerns? Just curious.
     
  18. Jordansmom

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    I have contacted them in the past about not participating in fundraising and activities because of their opposition to Faustman's research.

    I havent had an opportunity to contact them about their recent announcement. I am always one to back up my personal critism with a letter where its appropriate.
     
  19. Christopher

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    Understood. Did they ever reply? I wonder if you and the others who feel the same way got together to contact them if it would increase the chance of a reply. Just a thought.
     
  20. Jordansmom

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    No reply from JDRF. But you have a good idea. Some of us like minded people should put some action behind our talk. :)
     

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