Wearing the Bionic Pancreas: An Interview with a User

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Dr. Edward Damiano, the creator of the bionic pancreas currently undergoing trials, speaking at the Joslin Symposium on type 1 diabetes earlier this year.

Scott Scolnick is a sales territory manger for Tandem Diabetes Care, Inc. the insulin pump company which makes the tslim insulin pump. He is also a person who has had type 1 diabetes for about 35 years. He received the news that he had type 1 as a 15 year old vacationing in Israel. The doctor who diagnosed him at the time didn’t give him much hope of living past his forties.

Despite the M.D.’s grim prognosis, he has survived that hurdle and now uses an insulin pump and continuous glucose monitor (CGM) to control his blood glucose levels.  I talked with Scott about his experience as a participant in the Massachusetts General Hospital trial of the “bionic” pancreas.

Massachusetts General is conducting clinical trials of the artificial pancreas created by Edward R. Damiano, Ph.D., Associate Professor at Boston University, in an ambulatory setting. The device (nicknamed a bionic pancreas) has been previously tested in a tightly controlled inpatient environment on adults and teens. This is the first time it has been put to the test in anything resembling the real world.

How did you find out about participating in the study?

Through a colleague of mine. She was looking into it and thought I might also be interested.

Tell me a little about your experience?

I was connected to two pumps and a continuous glucose monitor which communicated with an iPhone application. One pump delivered insulin and the other glucagon. The pumps were tslims and they used the Dexcom cgm. We stayed at the Wyndham hotel in Boston for six days and five nights. At night we had to stay in the hotel room hooked up to an IV which checked our blood glucose in 30 minute intervals, but during the day we were free to do whatever we wanted as long as we stayed within 3 miles of the hotel.

What was the best thing about wearing the bionic pancreas?

I never had to know my blood sugars. We were offered the information if we wanted it but most of the time I didn’t want it. It was great to feel like everyone else.

So how did things work out?

The experience was amazing. My blood sugars were never above 252mg/dl and I only had one minor low while I was exercising. My maximum blood glucose for a 24-hour period was 252mg/dl and my average was between 106 and 128mg/dl. And I tested the bejesus out of that machine. I ate things I haven’t eaten in years in quantities I never touch. I had 5 slices of pizza for dinner one night, a hot fudge sundae, fried clams, French fries, and Chinese food at 10:30 at night (I rarely touch it—it isn’t worth the effort figuring out how to dose for it with the pump), and sushi–. I usually only get sashimi, but not this time. And it didn’t matter. I exercised like crazy without having to think about going low. The low I had happened when my blood sugar was 84mg/dl and the cgm showed that it (my blood sugar) was heading down. An idea that I had was perhaps they could add priming does of glucagon for exercise the way they have the priming dose of insulin set up for meals.

So you never had to test your blood glucose yourself—it was all done through the CGM?

No we checked before mealtimes and exercise for the study protocol as well as the DexCom calibration—but you didn’t have to know the result. You could give yourself a priming bolus if you wanted; otherwise the machine took care of all the adjustments.

Tell me about the priming bolus. What was that for?

Since the bionic pancreas is reacting to blood glucose levels, rather than anticipating them, the priming bolus for food let you get ahead of the curve if you wanted to. You had several options to choose from when giving the priming bolus: a smaller than usual, usual or larger than usual meal or just a bite.

Was there any downside to wearing the pancreas?

At night you had to be attached to an IV; your BG was measured through the IV. That was annoying. And you had two infusion sets which you had to change every 24 hours. But those were minor frustrations and this is only the testing phase.  They are going to be making many modifications as they conduct more trials.

What was the best thing about your experience?

Not having to think about it (having diabetes) (how much food I am eating, what my blood sugar is and what direction it is going in)-not having my brain be full of this stuff.  When I was exercising I could concentrate on what I was doing and just listen to the music, instead of always having to keep focusing on what my blood sugar was doing. Even my interactions with my family were better.  No tension about whether I was going too low or too high. It is unbelievable how much stress diabetes puts on your family

It sounds like you found the experience life-changing. How did you react when the trial was over?

I was a bit down, having to go back to checking, counting carbs, always being aware of my blood sugars was depressing. I guess it was similar to the experience of having a great, relaxing vacation, there is always a little bit of sadness when a good thing ends.

Do you think the artificial pancreas will really come to fruition?

Yes, you know when I was diagnosed in the 70s, they said there would be a cure within 10 years and people have been saying the same thing year after year.  This is the first time I believe it might be so. I think its close enough that they could work out the bugs in the next few years

*The artificial pancreas would replace the functions of the human pancreas but it doesn’t cure the disease.

23 Responses to Wearing the Bionic Pancreas: An Interview with a User

  1. JR says:

    This is excellent. When they have this worked so that we can use an android or iOS app and perhaps combine the two pump system into one machine with dual tubes or a dual channel tube… it will be very liberating. I’ve always wondered if it were possible to have the infusion set, via the canula maybe, also send bg levels. Personally I can not wait for tech like this to make out to the rest of us. Next best thing to a cure. Thanks!

  2. Annette RB says:

    I am amazed at progress I have seen in insulin treatment since 1958. From one glass syringe my mother or I had to boil to sterilize before each injection and using the same stainless steel needle for weeks..months..years…in England and the USA.
    Mothers used to sharpen the needles. If only mum and dad could see and know about my insulin pump, CGMS, BG meters and being a Joslin/harvard 50 year Medalist in a study to find the cure! oh how my heart beats thinking of a bionic pancreas ;)

    • Sherrie Johnson says:

      Annette,
      Sounds familiar your stories about glass syringes and those dull needles. I was 14 back in 1861 when diagnosed. Just joined the medalist program at Joslin. A very good group of people.
      Life is good to me and I am good to it. I have been on a pump for 24 years now. I have always taken a proactive approach. I am forever optimistic for the future of us all. Sherrie

  3. Staci Rullo says:

    Sometimes when I have highs and lows all over and my brain isn’t exactly right; most long term type 1′s will agree ourselves and our families suffer a great deal.
    I am soon to be 56 and have been type 1 for 53 years. I don’t know what normal is.
    Time for a break please. Thanks for the article. Hopes are high.

  4. Aymeric Lecanu-Fayet says:

    Scott, thank you for volunteering to help bring the artificial pancreas closer to reality.

  5. Janet Gunn says:

    Wow, Scott this is great information thanks for telling us about your experience. We all look forward to the day we don’t have to think about it!

  6. Jennifer Vescio says:

    This is so promising! Glad you caught a break for a bit. I know there will be a cure – or at least a more livable treatment- for my 7 year old daughter someday. Thanks for sharing.

  7. Cindy Shaler says:

    Thank you, Scott, for being a test subject for the rest of us! This summer is my 60th year with type 1 (I’m 63 now) and I’ve heard since I was a youngster that there will be a cure in only 5, 10, 15 years. I stopped listening a long time ago. It’s good to give back through the 50-Year Medalist Study and having a bionic pancreas before I die would be neat–but I won’t hold my breath. I have hope for younger people, though.

  8. Arlene Cohen says:

    My husband was a 50 year Joslin medalist. He passed way 4 years ago.I remember his using glass syringes and sharpening needles. He was so happy when he got an insulin pump. If he were alive he would be so excited for the future of these new inventions.
    I thank all the people who work on these projects and those who become guinea pigs to advance the work of improving life for Diabetics.

  9. This technology is really quite exciting. I had 2 Brothers with Diabetes and were diagnosed with the disease in the late 1930′s and early 1940′s by Dr. Elliott Joslin, Sr. I was diagnosed by Dr. Elliott Joslin in 1966 at the age of 25. I am on the Medtronic pump and CGM. I would love to participate in the trials.

  10. Donald Husband says:

    Scott It is great that you are aiding in the development of the artificial pancreas. I have been a type 1 diabetic for 58 years and a Joslin medalist. I just celebrated my 80th birthday. I am a brittle diabetic with both highs and lows ranging between 57 and 350. I have always exercised to aid in maintaining a healthy body. but cannot seem to control those wide swings in my glucose level. I hope the development of the monitor and pump comes about soon to aid others with this problem.

  11. I, too, stopped listening long ago to the predictions of a “cure” in “5,10, years” because I’ve been too busy living with TiD. In the memory of my best friend, Karen, z”l, for my son-in-law, Scott F., for myself, (T1D for 43 years and counting), and for all the other people with T1D I know and love, I pray that this research is successful.

  12. Thank you for sharing. I’m turning 54 and Bering Diabetic for 26 years is no fun. Trying to worry about where your blood sugar is going is so tiring. Beeing like a normal person feels good. You give us HOPE. Thank you.

  13. ReneeMM says:

    Thank you, Scott, for being brave and courageous enough to do this. It is people like you that will positively improve life for the rest of the diabetic world. You are so right about the stress this disease puts on a family! I happen to have a very calm, quiet husband, but he too, suffers from Type 2 and has high blood pressure to boot. He’s so patient with me. He gets low as well; he calls is “shaky”. Oh do I know. I was diagnosed with Type 1 after being treated as a Type 2 for over 6 years. I honestly believe that a severe underarm infection I suffered for over 3 months and 3 rounds of antibiotics knocked my pancreas out of being!! I lost over 50 lbs. in that ordeal but hope to keep it off to stay healthier. I don’t recommend this as a way to lose weight! Since January 2013, I have been wearing an insulin pump. What I am ever amazed at is how POSITIVELY exercise affects my blood sugar! I cannot stress this enough for people. But you must be careful—a low can sneak up on you if you are really really busy!

  14. teresa says:

    How do you get chosen to be one of persons who get to participate in a study? I would love not to have to take multiple shots daily. I’ve been diabetic 37 yrs.

  15. surinder singh MD says:

    KEEP THE AMAZEMENT GOING.

  16. surinder singh MD says:

    WONDERFUL

  17. Wendy Weinberg says:

    Amazing article! I am 45 years old and have had T1D for 15 years. I have also been told about a “cure” within the next 10 or so years. I am not hopeful for a cure anytime soon, but love the idea of a bionic pancreas in the near future and would be happy to sign up for a trial myself! I could not imagine the absolute joy of having a diabetes vacation :)

  18. Fiican says:

    Reading this kind of news give hope and I worry a little bit for my 5 years old daughter’s future. She knows nothing else, but having diabetes. My wish for her is that one day she can eat anything other kids eat. Hope that day will come soon for me and her.

  19. Ann Marie Montello says:

    Scott, thank you for your effort with this bionic pancreas. I am a Type 1 for 48 years and am 59 years of age. My doctor, when he diagnosed me, told my mom that my life expectancy would be ten years less, and that I should never have children as it is too risky. I have two beautiful and healthy adult children with children of their own. Back then,I was on the beef and pork insulins and had so many issues with them being a foreign protein in my body that the high doses were horrible. I have been on a pump for 30 years, several actually and just love it. I also did the CGM for a year but did not like it due to bleeding into the cannula frequently from being on Plavix and aspirin for my six heart stents. For those of you who were told that this would be cured in ten years, I had a doc saying five years and that was in 1970. I am looking forward to this new pancreas actually as I cannot remember when I could eat anything in any amount whenever. It would be fun for a few days, but I know me and I know I would get back on track shortly. I would worry endlessly about getting pounds added on so that alone would stop me. Not doing so badly as at my age .I am normal weight, and a certified aerobics instructor, when not working my real job, over 30 years. Life has been an ongoing struggle and this pancreas will surely make it different for us all. God Bless the doctor who is heading this project, he must be Italian! ( lol )
    Ann Marie Montello

  20. Peter Munro says:

    Thanks for your efforts! I think many of us would loved to have changed places with you for a short (not simple) break from T1D. Fingers crossed for all of us!

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