Advertisement

19 Responses

  1. Cherise
    Cherise January 20, 2010 at 7:45 am | | Reply

    Amy- awesome news! They are going to address many of the issues i thought about when making my pump decision. Hope they can get all the kinks worked out.

  2. Paul
    Paul January 20, 2010 at 7:48 am | | Reply

    “A cure is still our ultimate goal, and we’re still spending 80% of our research budget on pursuing that. But you have to appreciate that a walkaway cure is not around the corner… We probably overpromised on that in the past. We believed too many overenthusiastic scientists.”…..wow, that will bring in a lot of donations. 40 years and over 1 billion dollars spent and he says that…. unbelievable. Then again I have been hearing a cure is 5 yrs away since I was diagnosed in 1973.

    I don’t get this whole AP thing to begin with. From what i read it will do what I am already doing now. I have a medtronic pump and CGMS. I have alarms that go off at 180 and 60 and I act accordingly. I don’t need a computer algorithm to tell me what to do. CGMS has to be dramaticly improved before AP can become a reality. I can only imagine the lawsuits that will occur if someone goes low while driving while using an AP and kills someone. Why any company would want to take this on is beyond me.

  3. kt
    kt January 20, 2010 at 9:11 am | | Reply

    wow, negative nancy! of course an artificial pancreas is not going to happen before the sensing technology improves. but baby steps? certainly the technology that exists today is an improvement over its absence.

  4. Melissa
    Melissa January 20, 2010 at 1:37 pm | | Reply

    I learned very early on in having this disease that money given to JDRF was money wasted. Now with their 2 “partnerships” I don’t think they should even be calling themselves “nonprofit” any longer. They have completely lost site of what their original goal was. How much did they donate to Denise Faustman? Oh, that’s right, nothing. How about LCT? Again, nothing. Anything that looks promising as an actual cure, JDRF avoids like the plaque, or does their best to discredit.

  5. Audacity
    Audacity January 20, 2010 at 1:43 pm | | Reply

    I literally do not even know what to say about this. I am absolutely speechless. This is wrong on so many levels, I can’t even believe that people on this board are supporting it.

    Do you realize that the JDRF has now turned into a full blown investment company? Now they allocate funds where they feel they can earn money. Forget a cure. That doesn’t matter now. And they still get tax exemption from the government. What the JDRF has done here is called up their Stock Broker and purchased shares of BD (with a promise that it will go towards Type 1). This is not “Dedicated to Finding a Cure”.

    Aaron, instead of making up these bogus PR spins, why don’t you provide us with some transparency? For instance, how much of our Cure money did you invest and for what percentage of the profits? How have previous deals like this panned out? How much Cure money has JDRF invested in billion dollar companies and what is your returns on it, in its lifetime?

    Most importantly, I want to know how much money was lost between my $1 donation to you, to your investment in BD? How much got “middle-manned”? This will be very important in my decision to spend another 500 hours fund raising for you or instead buying stock in these billion dollar public companies next year?

  6. Colleen
    Colleen January 20, 2010 at 6:27 pm | | Reply

    Wow. There’s a lot of negativity here. Does anyone remember when JDRF was just JDF? I kind of miss those days. We had an organization that could fight for us in every fashion without being overly criticized.

    Anyway, I have always understood that one of the goals of JDRF was to better the treatment of type one diabetes and it’s complications so that we can all make it to a cure.

    They, for example, funded studies for the sole purpose of getting insurance companies to pay for CGMS for patients more regularly. And it worked! I don’t know about anyone else but I highly doubt I’d have my CGM without those studies. And I’m certainly not going to stop supporting the organization that made it possible for me to get it!

  7. Chris Stocker
    Chris Stocker January 20, 2010 at 8:12 pm | | Reply

    I agree that smaller and less painful sounds like a great idea to me. Ultimately, I would love for their to be a cure, but before that happens, I would like everything that I have to do to manage my diabetes become easier and less painful.

  8. katerina
    katerina January 20, 2010 at 11:42 pm | | Reply

    Well thats it for me I’m not going to give any more money to the JDRF. If I decide to support the big pharma companies I can always buy stocks!

  9. Melissa
    Melissa January 21, 2010 at 9:47 am | | Reply

    There is a reason most insurance companies don’t want to cover CGM. CGM is worthless for most people with diabetes. The margin of error is so great on CGM systems that they cannot even replace fingerstick testing, you still have to do as many, or almost as many, fingerstick tests. While it is a great tool to figure out trends, it’s hardly worth the cost to use on a daily basis for most PWD – just ask your doctor to set you up with one for a week to trace trends. I would much rather they come up with a fingerstick monitor that has a much smaller margin of error than to continue inventing devices with large margins of error.

    How many differnt monitors, pumps and “cute accessories” do we need before we start focusing on an actual cure?

  10. Anne Findlay
    Anne Findlay January 21, 2010 at 11:10 am | | Reply

    I want a cure as much as the next person but I would welcome changes that would allow me to live my life with reduced stress over lows and highs. Obviously the AP won’t be a cure. But if I can spend most of my day in excellent control without having to worry about it? I’ll take it.

    When I was diagnosed in 1988, I was told a cure was about “5 years off.” While I still hope for that, living better with diabetes in the meantime would be a big help.

    CGM technology will continue to improve. Different people have had different experiences. For me, I was able to cut down on my BG testing, and the accuracy was good enough to drop my A1c by 1%. (Still, my insurance won’t cover it because I am not having seizures or going to the ER for bad lows.)

    I think the JDRF does have to be careful with these investments; openness with donors and strict follow-through with corporations needs to be in place… I think they should have some say in the pricing of the end result. What use is all of this if it is so expensive that no one can afford it?

  11. Melissa
    Melissa January 21, 2010 at 11:49 am | | Reply

    Anne – I agree with you that tools that actually improve our health would be welcomed. My point though is that at this point in time CGM is hardly worth the money and effort since it cannot replace fingerstick testing because the margin of error is too wide. Not to mention they should work on closing the gap of margin of error on traditional fingerstick monitors as well, those aren’t so hot either. I use an insulin pump, without it I most likely would have died. But there are at least a dozen different insulin pumps on the market and 3 times as many glucose monitors. You can pick size, color, function, etc. I don’t want another tool that “might” improve my A1c by 1 to 2%. It’s time for a cure. As you stated, in 1988 they told you a cure was 5 years away. They told me the same thing when I was diagnosed in 1998. And they’ve been saying “5 years away” for the cure since insulin was discovered in 1922 – that’s 88 years, according to the estimate of a cure being 5 years away since then we should have 17 different cures by now.

    The JDRF was founded by parents of children with diabetes with the specific goal of finding a cure for type 1 diabetes – there are plenty of drug and device companies out there working on better tools, JDRF needs to stick with its original goal of curing this disease or give up it’s non-profit status and join the rest of Big Pharma. I’m not donating money to JDRF if it’s not going to finding a cure. I make enough “donations” to Big Pharma every time I check my levels, dose up insulin, etc.

  12. Cathy
    Cathy January 21, 2010 at 1:16 pm | | Reply

    JDRF… if you are listening PLEASE dontate some of your millions of dollars to Dr. Faustman…. she needs 8 million to start Phase II of her clinical trial and only has 2 million. What’s 6 million to JDRF?? Pocket Change?? JDRF can still do the “side” stuff but this would really help give us donators much needed confidence in JDRF.

    I feel my checkbook calling me to write another donation to Boston and Dr. Faustman!

  13. Melissa
    Melissa January 21, 2010 at 1:50 pm | | Reply

    I highly doubt JDRF will ever donate to Dr. Faustman. She applied for grants with them the first time around for a mere 2 million and they turned her down, and then turned around and attempted to discredit her! Besides, a grant to Dr. Faustman that leads to a cure won’t have the pay-off a partnership with Big Pharma businesses does. In fact, with these business partnerships they’re probably crossing their fingers a cure isn’t found before they can reap in the profits.

  14. Melitta
    Melitta January 21, 2010 at 10:30 pm | | Reply

    I am a pragmatist, and I really support what JDRF is doing with these partnerships. I believe that for me personally, technology is what will significantly improve my life (I don’t believe that I will see a true cure in my lifetime). We Type 1s don’t have the numbers to get the money/advances moving our way, so I am grateful to JDRF for making it happen.

  15. Penny
    Penny January 22, 2010 at 8:18 am | | Reply

    JDRF scientists have known for over 10 years about the positive ‘curative’ effects from Vitamin D supplementation amidst epidemic levels of Vitamin D deficiency. This is a fact yet where is their campaign to wipe out Vitamin D deficiency through education and awareness? Well?

  16. Marco Bianchi
    Marco Bianchi January 22, 2010 at 9:57 am | | Reply

    Melitta has capture my way of thinking. Technology is the only answer. Period. I was diagnosed 30 years ago and this “5 year cure” was used then, and as i can read still used now. JDRF funds great research, but even the fundamental science work they support is still in its infancy. Cure is the aim but nowhere near. For those who keep putting off the hard work needed to manage diabetes well (in the idea that a cure is coming soon) the spectre of long-term complications might become a reality. closed-loop sytems will be our best option, therefore if JDRF funds those developments, i’m fine with that. Your other option is to is to buy JnJ and Medtronic stocks.

  17. William Lee Dubois
    William Lee Dubois January 22, 2010 at 1:51 pm | | Reply

    Slightly different view point here: if is that shallow, what are the risks it will pull out?

  18. Insulin Pump Subsidy for Children accounced « Health Insurance Australia

    [...] Another Commercial Partnership: JDRF and BD Join Forces to Improve Insulin Pumping (diabetesmine.com) [...]

Leave a Reply