JDRF on Diabetes Design

Who’s excited about our new YouTube-based Diabetes Design Challenge, launched yesterday? Ooh, me, me! And guess who else? The national advocacy group JDRF (Juvenile Diabetes Research Foundation). I was delighted to have a talk earlier this week with two heads of their progressive Artificial Pancreas Project: research director Aaron Kowalski (interviewed here before) and head of new technology Cynthia Rice. Here’s a synopsis of what they had to say, mostly in Aaron’s words:

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GOLDEN OPPORTUNITY

When you think about medical devices, they’re most really driven by physicians — pacemakers, etc. These are physician-driven tools. However, diabetes is so unique in that you see your doctor every three months or so — if you’re diligent — and you manage everything the rest of the time. You own the devices, you’re managing them, and you just go in for tune-ups.

Diabetes provides unique opportunities to take these devices and ratchet up their form factor. We think you hit the nail on the head when brought this issue to the forefront. We need smaller, easier, more convenient devices, and we’ve only begun to see these materialize. It’s a golden opportunity.

LIFE POTENTIAL

When we talk about the artificial pancreas, we believe it has the potential to transform life with diabetes. Of course the safety and efficacy have to be there, but we can do that. We’ll show that in the coming years. In fact, the Artificial Pancreas (AP) problem was actually solved in 1970s, with the BioStator machine — but that thing is the size of a large chest fridge-freezer, so it works, but you can’t lug that around.

When we talk to volunteers about new devices and the AP, they’re motivated by things like their 8-year-old granddaughter who was diagnosed recently, saying it’s so hard for her to dress — she needs to get a seamstress to make a special pump pocket in her pants. These are the life issues people are dealing with.D_devices

Pumps and sensors are now very good. They’re helping people. But to really make as wide an impact as possible, you have to concentrate on the form factor, ease of use, and incorporation into other devices (like cell phones). That is huge.

If the majority of people with diabetes can’t easily benefit, then we haven’t reached our goal. We’re hearing from many, many people all across the country, saying this is a critical issue — for toddlers, older patients, people of all ages and walks of life.

THE BALANCING ACT

Our job is to help people do better — get better A1C results, be happier, experience less hypoglycemia, and achieve peace of mind.

If you think about it, these are the two key goals:
1) glucose control
2) peace of mind/ happiness

You have to have both. It’s a difficult balancing act. You can go too hard on blood glucose control and be miserable, or you can go the opposite and be happy-go-lucky but very unhealthy.

If we’re going to impact people positively, then we need to help them with their blood glucose control — to experience fewer swings — but also make it EASIER for them to accomplish. That means issues like not having to lug around so much stuff, not having to think about your BG levels every second of the day, or count every speck of carbohydrate you eat. We talk about good diabetes management from the medical side, but the other side of the equation so important too…


GIVE US CHOICES

People with diabetes are so varied. There’s the 8-year-old kid going to school every day, versus the older gentleman who may be retired and barely gets out of his house. Consumer design takes that variability into account, but traditionally medical design does not. What we really need and want are choices.

Someone who travels a lot might like a meter integrated into their cell phone, whereas parents seem to typically want small products that fit in their or their childrens’ pockets. Some people want a separate handheld controller, while others don’t. Some don’t mind being “tethered,” while others can’t stand it. This is one of the key things we’ve learned in our initiative. Academic researchers have now done many clinical experiments on AP technology. The next phase is to push companies to get on board, especially with creative designs.

One of our core beliefs is the importance of having more than one company working on this in order to stimulate competition and provide a variety of choices. We applaud what you’re doing at DiabetesMine, because it sheds light on this need.

You have to love the folks at JDRF (and not just because they said nice stuff about the blog); they really “get it.” So send them some love. Then send us your contest entries. Oh yes.

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18 Responses

  1. Paul
    Paul May 1, 2008 at 7:22 am | | Reply

    I wish JDRF would focus more on a real cure. I have been type 1 for 35 yrs now and I have raised a lot of money for JDRF doing the Ride to Cure Diabetes events. I have written them myself and I think most type 1′s would agree that we want a real cure not another machine to wear. The cynic in me thinks, “oh great another avenue for companies to make money off of me”. The estimates are that having type 1 costs about $15,000 a year to treat and the way health care is escalating who knows what that cost will be in 10 years. A cure is what is necessary. That is why I hope Dr. Faustman’s research will be the answer. Curing diabetes with a $10 drug that’s been around a lon, long time. That would be so bittersweet.

  2. Kathy
    Kathy May 1, 2008 at 7:44 am | | Reply

    Ditto what Paul said. I don’t hold my breath for a cure anymore, but someday the “8-year-old kid” cited here will grow up…and she’ll be more worried about the effects on her body of having T1 diabetes for 20+ years, NOT the “creative designs” for all the maintenance tools. Yes, we want “peace of mind” and better control in the meantime…but isn’t JDRF supposed to be the one more focused on curing the darn thing?!

    Sorry–rant over!

  3. Max
    Max May 1, 2008 at 8:31 am | | Reply

    I wear a pump (Omnipod). love it – but what we really need to focus on is (everyone together) a CURE. I welcome gadgets and nice designs and making a contest out of this is, I suppose, innocuous enough. But I wish more folks would get behind Living Cell, who is actively cutting to the chase, and make JDRF, ADA, Eli-Lilly, this website, etc. obsolete once and for all.

  4. Allison Blass
    Allison Blass May 1, 2008 at 9:10 am | | Reply

    JDRF *is* more focused on finding a cure. I don’t get why people think that just because they have one project on making life with diabetes easier means they’ve completely given up hope on finding a cure for diabetes. If you’ve ever read their research newsletter or go to one of their research seminars, you’d see they spend WAY more money on finding a cure for diabetes than they do on the Artificial Pancreas Project.

    They also do a hell of a lot of work getting the government to fund the research too (which the government should do because the health of its citizens should always be one of the top priorities).

    I wish people would calm down about the APP project. Just because they think it’s a worthy cause does not mean they have moved finding a cure to the bottom of their to-do list.

    Even if Denise Faustman’s plan does work, does anyone even know how long it would take to get all the subsequent trials and approval by the FDA over and done with? It could be YEARS. And personally, I would like to make sure I’m alive – and fully intact with all my fingers and toes and eyes and kidneys – when it happens.

    - end rant -

  5. Paul
    Paul May 1, 2008 at 10:01 am | | Reply

    -begin rant- :)

    I am in no way putting JDRF down. I have been diabetic almost as long as they have been in existence. I know first hand of the progress they have made over the years in treating diabetes. I also have been a regular contributor over the years. I have never been solicted by them in the past until this last year. Once by phone and once by mail and it was for..you guessed it the Artificial Pancreas Project. Of all the things they got going on why are they pushing this?….makes me wonder.

    -end rant-

  6. David Watson
    David Watson May 1, 2008 at 10:03 am | | Reply

    The problem is that we talk about the devices in absentia of the data that they generate as if the devices were somehow cordoned off in their own little world. If you think of the data as an “information device” then it’s much easier to conceive of a meaningful whole of devices collaborating together to produce an information space that is useful and usable to all of the concerned parties – patients and practitioners. All of these people want to get their hands on the data! The device is merely a prosthetic to achieve that.

  7. carol
    carol May 1, 2008 at 11:48 am | | Reply

    I guess I have a sightly different rant. If Artificial Pancreas technology has been available since the 70′s, why can’t I get one?

    Perhaps I define AP differently. I would like one that will handle diabetes for me most of the time. Continuous monitors must be calibrated and are not very reliable, the loop is not closed, and I don’t know of anything that senses a rise in BG before it happens (thereby eliminating the need for carb counting). I really don’t want more data and would be happy to let a reliable device handle things. I would even welcome the opportunity to be attached to a refrigerator sized one at certain times of the day/night if it would take total control of my diabetes management. So where is it?

  8. RandyB
    RandyB May 1, 2008 at 12:20 pm | | Reply

    I was just diagnosed with T1 a little over a year ago (at age 54) so I can’t speak to the trials everyone has gone through that has had this disease for 20 or 40 years, or more. I do feel that diabetes is so complex that there is probably nothing on the horizon for 10 or 20 years that is going to meet the expectations for a cure. Right or wrong, in the meantime I want the best and latest tools, and data that I can get to improve the management challenges that I have control over.

  9. Bennet
    Bennet May 1, 2008 at 1:37 pm | | Reply

    I think David Watson makes a great point. Data needs to be seen as OURS not the equipment manufacturers’. We the people managing diabetes need that data to be independent of the machines that produce it and use.

    Any meter or CGM feeds the data warehouse. All pumps list too. Multiple ways and programs for using data need to be available.

    Sadly those making the equipment see value in ‘proprietary.’ They invest in litigation of “their” systems over better products.

    If MAC, PC and cell phones all speak internet, why can’t our meters, cgm, pumps and software speak a common diabetes language.

    JDRF’s AP project will do a huge amount of good if it only helps bring standards to OUR data.

    Your Diabetes May Vary, so should the tools you have to address it.

  10. Kevin McMahon
    Kevin McMahon May 1, 2008 at 1:54 pm | | Reply

    At the risk of getting caught up in the JDRF discussion (which I think is healthy), I need to add my own 2 cents about design; you have to get it into the hands of real people in order to test it.

    Read the article (linked below) to understand that progress is being made in the field with tools that were designed based on human factors studies and behavioral psychology. The result is fewer hypos, less time spent hyperglycemic, less time managing, and efficiencies for the clinic staff and endos.

    Diabetech’s technology (my company) is only part of the solution. Ultimately, superior results come from expert application of the tools and the easier the tool the easier it is to maximize results.

    The story ran a few weeks ago and South Texas doesn’t seem to get its fair share of mainstream press:

    http://diabetech.net/pdf/diabetech.business.journal.pdf

  11. Lauren
    Lauren May 1, 2008 at 9:03 pm | | Reply

    I think that we should accept the fact that a “cure” is not realistic. The leading theory is that type 1 is an auto-immune disease. Auto immune diseases can never really be kept at bay without shutting off components of the immune system with very serious drugs. If we need immunosuppressants to protect regenerated/transplanted beta cells from attack by our own bodies, the cure is in many ways worse than the disease. Faced with life on immunosuppressants, I’ll opt for the daily hassles of diabetes management. I think we need to focus on complication prevention. Without complications, type 1 is a royal pain, but it’s not a debilitating disease — that’s what we should work towards, in my opinion.

  12. Sarah
    Sarah May 4, 2008 at 6:58 am | | Reply

    What has JDRF EVER done to make the lives of T1 diabetics easier? What significant progress have they made? I can name 5 huge T1 diabetes breakthroughs in the past 2 years or so, and NONE of them have anything to do with JDRF.

    I personally think the AP is a pipe dream, a waste of money, and a load of crock (sorry to burst anyone’s bubble). Ditto on the first post. I’m not going to attack those who support JDRF. I’m sure the little guys at the bottom fundraising for little Johnny mean well. But if you look at the bigger picture, all JDRF has done was fund the DCCT, which:

    -Was common sense.
    -Found that some complications may be autoimmune or linked to genes or c-peptide levels in some cases (not attached to A1c levels at all).
    -Gave Big Pharma a great platform to push more injections, test strips, and the like. Perhaps Big Pharma paid for the DCCT? So where does all of that JDRF millions in donations go?

    I know I can’t get anything from them other than a letter asking me to organize a “Walk”. It’s like a perpetual scam.

    Nevermind new technology, the old still is not perfected. My pump was recalled twice this year and died 3 times. I have a diabetes association newsletter talking about the “artificial pancreas”…in 1967. If we could do it, we would have by now.

    I personally think that we have made such great strides in autoimmune diabetes that it simply doesn’t make any sense to focus on another piece of junk I have to buy to keep me alive. I think we’ll see a feasible “cure” before we ever seen an AP.

    P.S. Lauren: You are looking at autoimmunity the wrong way. If the theory that beta cells regenerate is true, then removing the trigger (assuming it’s possible) should stop the autoimmunity. In Celiac Disease, the disease (generally) goes into remission with the removal of gluten from the diet. Simple as that. Modulating the immune response without removing the trigger is the most stupid thing scientists have ever tried to do. Doomed to fail. And Type 1 CAN be “debilitating”. Some of us can have very unstable BG’s and are prone to seizures. It’s not always as easy to manage as people have been brainwashed to think. We have new generations of people clueless about how hard it really is to live with T1, and thus, no incentive to understand why we need a cure.

  13. Lauren
    Lauren May 7, 2008 at 4:18 pm | | Reply

    But, what is the trigger? What causes the immune system to form antibodies to islet cells? There could be a viral vector (this is the theory I’ve heard most about), and there are theories that low levels of vitamin D trigger beta cell death. As far as I know, however, there isn’t an identifiable trigger for T1.

    As for autoimmunity, once your body has antibodies to an antigen, it will continue to recognize it as foreign and rally the immune defenses each time it detects the antigen. (The efficacy of vaccines is due to this feature of the immune system.) So, even if the beta cells repopulate, they are doomed once the immune system gets a whiff of them.

    It’s theorized that knocking out memory B cells (through immune modulation) will cause the immune system to stop recognizing beta cells as foreign. But again, that’s experimental, and it’s certainly no cure.

    It’s true that I don’t find diabetes debilitating but I also don’t find it a cinch to manage. I am not a brittle diabetic, however. My BGs are responsive to my management. I’m grateful for that. As long as I can live complication-free I’ll count my blessings.

  14. Sarah
    Sarah May 9, 2008 at 12:28 am | | Reply

    Lauren…you’re a med student…think about this a little more….

    There is much evidence that a virus may be ONE of the triggers involved for typical autoimmune diabetes. The food proteins gluten and casein are also implicated in many studies.The TRIGR study is under way right now. A lack of Omega 3 and Vitamin D may be the clincher in someone genetically prone and exposed to all of the triggers.

    Too many people look at autoimmunity the wrong way. They are taught that is an “organic” misfiring of the immune system. That may be partially true in a sense, but the trigger may STILL be present and continuously causing the disease.

    We *may* have to modulate the immune system, but we *may not* have to as well.

    I have to use Celiac Disease again, which is genetically related to Type 1 and the only autoimmune disease in which the trigger is known (Celiac also seems to need an initial trigger such as a virus). Basically, in people prone to autoimmunity, anything that can increase the “leaky gut” and exposure to food proteins/viruses/factor x may bring on the disease onset. This may be stress, illness, trauma, etc.

    In people with ACTIVE long standing Celiac, you take away the trigger (gluten), and the disease goes into remission and the body heals (in most cases). Not in all cases (Refractive Celiac), but most.

    So I am not sure why med schools keep teaching the theory they do when all recent data says something otherwise.

    I’m not saying all people can regenerate beta cells, most likely euglycemia from a temporary transplant/a permanent transplant/beta cell regenerating drugs will be needed.

    But what I am saying is that many people are STILL looking at autoimmunity the wrong way. The way I once did.

    This is why we have made so little progress until now. We were barking up the wrong tree.

    I know memory T-cells are an issue…but with no trigger, they may not be…

    All I’m saying is that the “old way” of seeing autoimmune diabetes is not helping the cause, and the track record for past research shows. New research is what people should be focusing on.

  15. Lauren
    Lauren May 9, 2008 at 4:04 pm | | Reply

    It’s because I have studied immunology and worked in a lab that employed immunohistochemical assays that I am skeptical of certain theories.

    Once you have auto-antibodies (e.g. GAD65) on board, you’ve got trouble. As long as those antibodies are present, they will recognize islet cells as foreign. That’s one of the problems with transplanted islet cells, no?

  16. Sarah
    Sarah May 12, 2008 at 6:54 pm | | Reply

    Lauren, I also am an Immunology and Microbiology major.

    We simply must not assume that autoimmunity will continue to occur without the presence of the trigger.

    Even if a transplant is still needed, removing the trigger (and thus autoimmunity) will improve the success of a transplant. If one’s own stem cells are used, no anti-rejection drugs will be required (assuming the autoimmunity is removed with the trigger).

    Have you considered that we will only have clinical reactions to any antibodies present only with the presence of the trigger, or that these antibodies will disappear if the trigger is removed?

    Again, look at Celiac Disease, the only autoimmune disease in which the (second) trigger is known. Remove the trigger, remove the active disease process.

    I am not sure why one would assume that autoimmunity is set in motion from only one event. New evidence suggests that it is constant, and many T1′s have constant beta cell turnover with constant autoimmunity (Joslin 50 Year Medalist Study). In other words, the body is trying to constantly heal itself.

    Current human islet transplants are futile and will never be a cure. They fail for a number of reasons, including poor beta cell mass and health, toxic diabetogenic anti-rejection drugs, and yes, continued autoimmunity. Again, dumb career researchers in the lab are not thinking clearly. All Edmonton Protocol transplants do is add more fuel to the fire.

  17. Louis Vuitton
    Louis Vuitton September 29, 2009 at 11:36 pm | | Reply

    I think David Watson makes a great point. Data needs to be seen as OURS not the equipment manufacturers’. We the people managing diabetes need that data to be independent of the machines that produce it and use.

  18. affiliate
    affiliate February 24, 2010 at 11:30 pm | | Reply

    next phase is to push companies to get on board, especially with creative designs.

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