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Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.’”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?’”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

34 Comments Post a comment
  1. This is so incredibly encouraging! It seems rather cumbersome but for great blood sugar control — worthwhile! My son is very excited about the possibilities with the bionic pancreas. He’s 13 now. I hope he goes off to college with one. Thanks for your update.

    07/30/14; 10:55 am
  2. Thank you for this awesome article!

    I’m excited about the future in technology and can’t wait until every person with T1 has their very own Bionic Pancreas!!!!

    07/30/14; 2:15 pm
  3. This is amazing. That video made me tear up!

    07/30/14; 2:27 pm
  4. Katie S. #

    My only problem with this system is the bulkiness and extra equipment. I certainly don’t want to go to work every day with a big GO BIONIC belt on (though I can totally see how that could make you one of the coolest kids at camp :-) ).

    Hopefully they will work that out and shrink this down before it comes to market. Otherwise, it is incredibly exciting!

    07/30/14; 2:40 pm
  5. Laddie #

    As someone approaching Medicare age, I don’t expect that I will ever get the opportunity to use this technology. But I do think a benefit to seniors will be the increased acceptance of the value of CGMS and ultimately the coverage of this device by Medicare. If you can trust a CGM to keep children alive in a closed-loop system, how can you say it is precautionary and not valuable for Type 1′s on Medicare?

    Have you started planning what you will do with all of the extra time in your life when you don’t have to constantly worry about and deal with your blood sugar???

    Thanks for updating us and I love the Tallygear belts!

    07/30/14; 3:09 pm
  6. Michele #

    WOW! I was teary through the whole article and video. These beautiful children all deserve to have this great technology. Let’s remember the the first insulin pump was huge and worn on your back. The technology will continue to improve every day. This is so exciting. So much hope in the video! Thank you to all who have dedicated yourselves to working on this! Words cannot express my gratitude.

    07/30/14; 3:39 pm
  7. Michelle #

    It looks wonderful in theory, but the system is sending correction from the cgm. That was specifically said not to do that from the instruction manuals. then again most people use the senso more than a week. However i found sometimes there number vary +/- 20

    07/30/14; 4:19 pm
  8. Okay, I was tearing up until I saw the picture of the girls… then I lost it. Just the thought of this actually becoming reality – to see this being tested in real-world applications… it’s just overwhelmingly joyful. 25.5 years into this disease, I’m not sure I could ever be “cured”, but this? This would be a dream come true.

    07/30/14; 5:00 pm
  9. Tammy Kuhn #

    I’d like to post this on my FB page but know some people cannot afford $100. Will any donations in any amount be accepted? I feel as many would donate because one of our high school mates recently died after having a pancreas/kidney transplant. Even though it has been over 20 years since we graduated. It hit us all very hard.

    I know many in my family would also probably donate a smaller amount as my son has type 1.

    Please let me know and I’ll post if smaller donations can be accepted.

    Thanks!

    07/30/14; 5:40 pm
    • Tammy — Thank you for such a thoughtful inquiry. My daughter, Addy, was one of the girls interviewed for this article.

      Donations of any amount are welcome. I’m so sorry to hear about your classmate…what a generous thought to make a donation in his memory.

      Here is the page where online donations are being accepted:
      https://www.bu.edu/alumni-forms/forms/eng/damiano/

      07/30/14; 6:46 pm
      • Michelle S. #

        I just made a donation and it was very easy to use the website. I hope the T1 community can help raise funds. I so agree with Kerri that the thought of money getting in the way is just crazy making…. I want one for myself but even more for all the kids out there. I was at a diabetes hockey camp yesterday and those wonderful parents need this to help their kids fulfill their dreams!

        07/30/14; 8:09 pm
  10. David A Ferrie #

    I’ve had T1 Diabetes since I was 9 Years old,8/12/69 that was almost 46 years ago. “I’m Getting Pretty Tired Of Riding This Out Of Control Rollercoaster!”

    07/30/14; 7:46 pm
  11. Regina #

    This is exciting. Although by my research other companies are much further ahead in Artifical Pancreas Technology. Glucagon is controversial and will be too expensive. I would rather a smart and less bulky device like Medtronic has. Treating lows with glucagon seems reactive- why can’t we prevent them with less insulin? All research in this area is exciting, but I will be investing my money elsewhere for my child’s health.

    07/30/14; 10:02 pm
    • Nancy Murphy #

      The amounts of Glucagon are very small. The body naturally uses insulin and Glucagon produced by the liver to control non-Diabetic blood sugars.

      I’ve used Medtronic’s sensor technology and it was so highly inaccurate (more than 60% of reading were generally off by up to 100 or more pts.) I regard it as dangerous and moved to the Dexcom G4 which is phenomenally accurate with 99% of readings literally within a couple of points of the actual blood sugar.

      Nancy, RN – T1D (1969),
      Mom to Grace, T1D (2011) Also in the Bionic Pancreas Study

      07/31/14; 1:34 pm
      • Kurt #

        WOW – is the Medtronic CGMS really that bad? My daughter Mandy (T1 since 1999) is using it with better results than your comment suggests is possible. I know that early versions of it were poor, but I would worry a lot more if the measurement is still so imprecise.

        08/28/14; 9:47 am
  12. Rachel Frey #

    Kerri, my family and I are so excited for this technology! My question is how do I get my daughter in one of these trials??!!

    07/30/14; 10:33 pm
  13. I don’t know if this is the “answer” but I do know that it will get us closer to one! Research like this has gotten us to where we are today and I am excited for the future.

    Plus those girls up there in that picture (and their moms) are two of my favorites!

    07/31/14; 12:30 am
  14. Jenn #

    As the mother of a daughter with T1, I am so hopeful that this will become a reality before she’s a teenager. Excellent article Kerry!

    07/31/14; 8:24 am
  15. Sheri #

    Definitely not a perfect solution, but well on it’s way. As far as I’m concerned, if they can get the glucagon costs and stability under control, wearing an extra pump is a small inconvenience when you think about better control without having to “crab” count. As always, thanks for your perspective, Kerri!

    07/31/14; 9:12 am
  16. Jamie #

    Thank you for the updates Kerri – cried tears of joy watching that video. Such hope!!

    08/1/14; 1:56 pm
  17. It may not be beautiful to look at, but looking at it is simply beautiful :)

    08/1/14; 10:21 pm
  18. Nikki #

    As a mum of a stoic, patient 5 year old with Type 1, I also cried happy tears for much of this video. Then I sent it to all my friends with the link to donate and then I donated to the Bionic Pancreas fund myself! Charlie uses the Dexcom G4 and the Vibe pump and we are already so grateful for this technology – we sleep better, we relax better and we are so excited by this Bionic Pancreas!

    Thanks to all the people who are working towards something that will help kids be kids and not mathematicians, scientists, dieticians and nurses! Though they are all great professions, 5 is a little young to pursue them! (That being said, Charlie will surely know decimal points when it comes time for them – the silver linings!)

    08/2/14; 3:49 pm
  19. K. #

    Why does the system use Glucagon instead of Glucose? It seems like using Glucagon would be pushing your body into a chemical process at every “externally”-induced low (i.e. because we are introducing insulin from outside the body to deal with x-y-z number of carbs) – maybe that’s a somewhat inaccurate analogy, but surely someone knows what I mean by this?). I wonder if, long-term, that might spell trouble in terms of making your body produce Glucagon to deal with every low, rather than introducing Glucose, which seems to me like a less “intrusive” solution. I’m just trying to understand the process. Seems promising, but seems like it would wear down the body over time, no?

    08/2/14; 11:10 pm
    • From what I know, the system doesn’t encourage the body to produce glucagon, but instead a second pump is worn with glucagon inside. Therefore allowing the second pump to administer glucagon as needed.

      08/3/14; 3:37 pm
    • Both insulin and glucagon are hormones produced by the pancreas (alpha cells produce glucagon and beta cells produce insulin). Even in normal, healthy pancreatic function, both insulin and glucagon work together to maintain normal glucose levels. In T1, insulin is non-existent and glucagon function is severely impaired (that is, if a person even continues to produce glucagon at all. Many people with T1 do not).

      Incorporating glucagon to work alongside insulin makes sense when the technology is intended to mimic the pancreatic functions necessary for glucose control. This is a true Artificial Pancreas.

      Beyond that, highly concentrated glucose cannot be infused into the subcutaneous layer without the risk of poor absorption and tissue necrosis.

      08/3/14; 5:39 pm
  20. I am crying so much over here! In a good way, but yeesh!
    When I was diagnosed as a child, the week before Halloween, in 1987, I was told “not in your lifetime” and over the years my face was laughed at so many times at the mere IDEA of using a pump, to the point that I stopped seeing an endocrinologist for over a decade.
    When I met my new (and current, because I just followed her when she moved) one, we clicked immediately, and she said that the other docs’ claims were untrue- we wouldn’t know if it would work for me unless we tried, but it would take some work, since I’d never been taught about carbs/bolusing etc. Now I have been on the Ping for 2 years and I mostly love it.
    When I saw the first video I ever saw about the bionic pancreas several months ago, my jaw dropped and tears fell. I was so happy to see that there is tangible evidence that progress happens- and even happier that it is helping Barton & Joslin kids! The 9 years I was at CBC were wonderful!
    it never ceases to amaze me the wonders of medical science and research. I hope that the bionic pancreas can one day become common and easy for people with T1.

    08/4/14; 12:08 pm
  21. This is fantastic! I’ve heard about plans for something like this in the past, but I never realized how close it is to being a reality. It’s very inspiring stuff.

    08/6/14; 12:18 pm
  22. elsiroomom #

    “No. It’s a little heavier but I don’t care. Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”
    This brought tears to my eyes.

    08/8/14; 2:23 pm
  23. Thanks for this, Kerri.

    08/14/14; 2:47 pm
  24. Jess Riggins #

    Kerri,
    I’ve followed your blog for a couple of years now and many posts have really hit home for me but I’ve never commented before, well I just can’t help myself any longer! This is so amazing, I had tears streaming down my face while reading your words! I agree that this makes me feel more hopeful than I can ever remember feeling in my 17 years with T1D. Can’t wait to see the next steps!

    08/14/14; 7:16 pm

Trackbacks & Pingbacks

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