For DIY ‘loopers,’ diabetes educators play important role

BALTIMORE — A person with diabetes who wants to build a do-it-yourself, closed-loop insulin delivery system already has access to the information needed to create the automated system; however, the support of an engaged diabetes educator is needed to help ensure good outcomes, according to two speakers here.

Diabetes educators should be supportive if a patient approaches them about using a DIY closed-loop system, also known as a DIY artificial pancreas, and to answer any questions without judgement, Jessica B. Kirk, MSN, RN, CPN, CDE, a nurse manager at the University of New Mexico, said during a presentation at the American Association of Diabetes Educators annual meeting. Many DIY users, who rely on online community support groups, speak of unsupportive providers when asking about using a DIY system, Kirk said, with providers sometimes noting the system could be dangerous.

“Someone talks to their doctor or the CDE about wanting to do the system, and their doctor or their CDE says, ‘Absolutely not, I will not support you in this,’” said Kirk, who has lived with type 1 diabetes for 25 years and built and uses a DIY “Loop” system. “What does that person do? They find a new doctor, they find a new CDE. Those are the overwhelming comments in the Facebook groups. We tell them, ‘Find someone who will help you, or we’ll help you.’”

Kirk said weary CDEs should take time to get familiar with the DIY systems, understand how they work, and support patients who are considering building and using them.

“Sometimes the first instinct when dealing with something unfamiliar is just to say, ‘No,’” Kirk said. “But, really think through that. Why are you saying no? Are you concerned that this person doesn’t understand insulin action and glycemic response? Ideally, any patient we have who has diabetes, we want them to understand that, whether on injections, CGM and injections, or hybrid closed loop. Our goal as CDEs, always, is to get people to understand insulin action and glycemic response and what their role is in that. We need to educate people to the best of our ability, so they are able to make the best, educated decision that they can.”

‘We are not waiting’

There are several quality of life factors that are driving the move to a DIY closed-loop system, Brenda Weedman, MS, BSN, RN, CDE, lead nurse for the Vanderbilt Diabetes Center’s Pump and Device Clinic at Vanderbilt University Medical Center, said during the presentation, including reports of improved sleep (the #1 community-reported benefit), reduced anxiety and frustration, reduced disease management burden, improved HbA1c and increased time in glucose range.

The hashtag #wearenotwaiting, Weedman said, has become the rallying cry of people in the diabetes community who have developed platforms, apps and cloud-based solutions, reverse-engineering existing products to improve their diabetes outcomes.

Weedman, who has lived with type 1 diabetes for 35 years, said the DIY “OpenAPS” system has given her peace of mind since she and her husband built it together over Labor Day weekend last year.

“These systems don’t get tired,” Weedman said. “They don’t get distracted. They don’t sleep. I wake up at 120 mg/dL every single morning. Talk about starting your day off well. I haven’t experienced that since my diagnosis until I started doing this.”

The DIY community includes more than 1,000 users ranging in age from 1 to 75 years, Weedman said, most with type 1 diabetes. Users range from endocrinologists and nurses, to software developers and biochemists, to parents of children with type 1 diabetes and college students. Many adopters, Weedman said, had no previous technical experience.

The community, she said, is self-supported through a 24-hour, global online support group, as well as a “strong safety message” and guidance to assist new adopters.

“Somewhere in the world, there is a ‘looper’ who is awake and is willing to help you,” Weedman said.

Basic system components of the DIY closed loop system include the following:

  • Medtronic insulin pump built before 2010 (U.S.), Dana RS (Sooil Development), or Accu-Check Combo (outside U.S.);
  • Microcomputer or iOS app that issues commands to enact a temporary basal rate;
  • Communication circuit board (Riley Link, Explorer Board);
  • Continuous glucose monitor (CGM), such as Dexcom, Enlite or the Freestyle Libre; and
  • Monitoring device, such as a smart phone or smart watch.

The DIY landscape includes three systems to date, Weedman said, including OpenAPS, Loop and the AndroidAPS, which is primarily used in Europe.

DIY limitations

The DIY systems have several limitations, Weedman and Kirk noted. Older pumps required to build the system are becoming scarce and prices are rising, whereas access to pump supplies can become an issue. There is no pump or system warranty, and the OpenAPS system requires lithium batteries. Older systems are particularly vulnerable to water damage, and device monitoring is still necessary. A new learning curve can also overwhelm some patients and CDEs, and there is no “1-800” number to call when things go wrong, Weedman cautioned.

The online support community, Weedman said, works hard to provide support for anyone who needs it, though individual education is important.

“The DIY community, they’re early adopters, usually, and we’re not afraid of diabetes,” Weedman said. “I was diagnosed in the 1980s. I didn’t have a blood glucose meter, I didn’t have a pen. I didn’t have Lantus, I didn’t have glucagon. I had 911 and my parents and regular and NPH insulin. So, what am I afraid of? I have all of those things now, and I’m a whole lot smarter, and I was 17 [years old] then. I’m not afraid to try new things.”

Safety, liability concerns

A CDE working with a patient who plans to use a DIY system should be aware of safety and liability concerns, Kirk said. Understand how the DIY system makes decisions, Kirk said, and make sure patients understand that as well. Kirk recommended referring interested patients to the community Facebook groups, including Looped, CGM in the Cloud, xDripG5, and Nightscout for Medtronic, to discuss concerns.

“These systems are making the exact same treatment decisions that patients would make,” Kirk said. “They’re using it as their insulin pump. They’re using it as their CGM. It’s just a little system they’re adding to that to help make more accurate decisions more quickly. A patient can go in and set a temporary basal every 5 minutes. Chances are, they would not do it nearly as accurately as a mathematical algorithm.”

CDEs still needed

Any patient wanting to build a DIY closed-loop system already has the needed support to build and run the devices, Weedman said; however, the diabetes educator is still part of a much-needed support team. The CDE should work collaboratively with the patient to negotiate appropriate goals and glucose targets, such as time in range, time in hypoglycemia and time in hyperglycemia, and negotiate appropriate post-meal and exercise ranges, just as one would with any other diabetes devices. CDEs, Weedman said, can also navigate challenges, such as locating a compatible DIY insulin pump, accessing pump supplies, fine-tuning the settings and troubleshooting glucose patterns.

“CDEs are still the key. You don’t have to be a tech expert to do this,” Weedman said. “All the things that can happen with open looping can happen with closed looping. [Patients] still need us very much.” – by Regina Schaffer

Reference:

Kirk JB; Weedman BJ. “You built a what?!” Preparing for conversations about non-commercial automated insulin delivery devices. Presented at: American Association of Diabetes Educators; Aug. 17-20, 2018; Baltimore.

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It’s good to read that medical providers are starting to look at their patients’ use of DIY systems with an open mind. We want our providers to understand that our looking to non-traditional patient-sourced treatment methods can be both effective and safe.

I just returned from a weekend type 1 retreat in San Diego put on by Dr. Steve Edelman and his Taking Control of Diabetes or TCOYD organization. Stanford endocrinologist Bruce Buckingham presented a survey of a wide array of treatment tools including CGMs, insulin pumps, and the spectrum of medicines used to primarily treat type 2 diabetics but also useful in many type 1 diabetics.

Dr. Buckingham then introduced a younger associate of his, Dr. Rayhal Lal. Dr. Lal gave a comprehensive review of all the do it yourself systems currently in use. The overall tenor of his presentation was one of competent respect for the clinical values these systems hold for the patient.

I love that the DIY #WeAreNotWaiting closed-loop systems for treating diabetes are being presented by the traditional medical community and are being seriously considered and treated with the respect that they deserve. This is no small thing. These DIY systems are not FDA-approved, are experimental in nature, and like anything that treats medical conditions come with their own risks.

Medical clinicians and researchers are by their nature a conservative group since they all adhere to the idea that any medical treatment must at first, do no harm. The DIY system patients and enthusiasts place safety at the top of their values and these systems have performed safely for millions of patient-hours.

Support of our traditional medical providers is helpful when we patients adopt these non-tradtional methods. I think these providers are smart to embrace this patient-led movement as we all try to live better with diabetes!

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I was very blessed to attend this retreat here in San Diego! And was so thrilled to finally meet Terry face to face verse over the internet. He has been my go to person on this looping process! I love talking with him about the technology and I love seeing how great his CGM tracings look.
I am so very fortunate to live in San Diego where the diabetes medical community is great. And I have an endo who has never said no to anything I have asked about or questioned. We have done a few things not in “standard”treatment plans and he along with my CDE’s have been very supportive. I do feel if I can get my hands on a pump that is compatible, my medical team would be very supportive and helpful and of course the DIY community will be the same.
And the cool thing about our wonderful community, Dr Lal asked who thought they might have one of head magic pumps and magically the gentleman in front of me raised his hand. So afterwards I asked he’d be willing to sell it. So he has my name and email and when he gets back to Delaware, he will check to see if it’s the right one and sell it to me!!!
Who knows I maybe looping sooner than I thought!
And I have such wonderful things and important things to say about this retreat. Again, learned a lot and learned so much from people during down times. We are a very helpful, supportive and fun group!

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In a nutshell…

#wehaveseenthefutureanditworks

No wonder us loopers are so evangelical…

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