Have you heard the latest news about the artificial pancreas and closed loop technology in the diabetes community? In September 2016, the U.S. Food and Drug Administration approved new technology that will automatically regulate basal insulin for people with type 1 diabetes.
This week’s community discussion was joined by Dana Lewis and Scott Leibrand, founders of the Open Artificial Pancreas System project, to discuss everything you need to know about this new technology. We were also joined by members of the diabetes community and Jewels Doskicz, RN and T1D, as our moderator.
Q. What do you think about the terminology around hybrid closed loop artificial pancreas technology? Is the terminology confusing?
A. Dana and Scott: I don’t mind naming, but I do think people are confused by the term. It’s important for each company to set expectations about what systems do.
Jewels: In my experience, simple, direct terminology is usually the best approach in medicine, and yes, it is confusing. Hybrid makes my mind think glucagon and insulin in the artificial pancreas (AP) system, but that isn't the case.
• I think "artificial pancreas" can be confusing. For me, a true AP would have no intervention from me at all.
• I think most people hear "artificial pancreas" and think "technological cure" which it is not. That misconception bothers me a lot.
• “Closed loop” within the diabetes community is preferred but outside no one really knows what a closed loop is.
Q. How would you describe the next set of AP technology (pump + sensor + algorithm) coming to the market?
A. Dana and Scott: To me, hybrid closed loop is a good description of next-generation technology. But regardless of name, companies must set expectations. I've also heard "automated insulin delivery system," but that as an acronym is misleading.
Jewels: The adjustable basal is a partial solution to the diabetes equation, not the whole package. The predictive technology still has our guessing in the process for carbs. It's not truly an "artificial pancreas."
• I tell people it's a bit smarter than the pump I have. It will be able to turn off insulin when low or nudge it up when high.
• I describe it to non-PWDs as having my devices actually talk to each other.
• I will describe it as a device that will protect you from hypoglycemia and severe hyperglycemia, but you still need to interact with the pump.
Q. Do you think it will be hard to switch from what you have now to a hybrid closed loop? What might prevent you from switching?
A: Dana and Scott: Access to info about what the hybrid closed loop is doing (and why) will be critical for me to make a switch to a commercial system. Admittedly, my answer will differ from many because I have had the fortune to be wearing a do-it-yourself (DIY) hybrid closed loop.
Jewels: I will get my daughter rolling with it, but I may hold out for a future version patterned after Bigfoot Biomedical’s example. Adjustability and customization are key with products we are attached to and interrupted by. The new Dexcom app is fixed at a scream for urgent lows. I wish they realized we are more than patients; loud isn't always best.
• Nope! I can't wait. My pump already stops basal upon low. The predictive highs and lows have been great. Sign me up!
• I think cost, insurance, and understanding the system are all barriers to adopting the artificial pancreas.
• Biggest barrier, as with most medical devices, is getting a system that works and can stay working for the length of the warranty.
• I really have had a hard time getting on board because it does feel a bit intimidating to take on such a task. Am I smart enough?
Q. What do you think it will be like to wear a hybrid closed loop? What might encourage you to switch to one?
A. Dana and Scott: For me, the best experience with a DIY hybrid closed loop has been gaining the peace of mind of sleeping safely overnight. This is not a cure, though. I still must rotate pump sites, calibrate sensors, etc. That being said, a hybrid closed loop has a learning curve, but generally means less work less often for results I want.
Jewels: Anything that may lighten the load that my child with T1D carries is a positive change in my book. After 32 years of managing diabetes and nine with my daughter, I can't even begin to imagine the pleasure we will find in AP technology.
• I think it's great! It will reduce diabetic burnout and improve general quality of life.
• I look forward to a smarter pump. Each one I've had gets smarter. Though I'm sure I’ll be checking it often for the first few weeks.
Q. What do you hope to learn before evaluating a hybrid closed loop option? Will this info come from PWDs or companies?
A. Dana and Scott: I want to ask the same questions to commercial systems that we ask of any DIY system: Is it safe? How do I know? How can I trust it? Much of this needs to come from companies. I’m hoping they are transparent with how their systems work, which is critical for gaining trust in my opinion. I realize an acceptable risk for me is not necessarily same for any other person. Choice of technology is a personal decision.
Jewels: I'll be diving in with my daughter, and we'll go from there. I imagine my most valuable info will come from the diabetes online community. Fingers crossed tech support is staffed well. Thirty minute to one hour wait times seem customary, and it’s frustrating with new product rollouts.
• I would want to learn how the correction of high blood glucose levels works. Other PWDs are a great source of info!
• From companies, I need to know and have constant feedback on what the algorithm is doing and why.
• Companies seem able to get it packed up in a way that just works, so I'm not as concerned about how. But I am interested in PWDs’ takes.
Q. What do you wish companies knew when launching a hybrid closed loop or other AP technology? What would you tell them to do differently?
A. Dana and Scott: That there is a learning curve, and helping people access their data will make a world of difference to succeeding with new tech.
Jewels: Listen to patient input. Give us free access to manage alarm settings—diabetes needs to be quiet in certain situations.
• Don't overpromise.
• Ease of setup and quick actions are a must.
• Wish they would be real with us. It's not an "artificial pancreas." Stop selling. If it's worth it, we will come in droves.
Thank you to all of the members of the diabetes community that participated in our artificial pancreas discussion, and a special thank you to Dana Lewis, Scott Leibrand, and Jewels Doskicz.