Patients have developed an application as powerful as a real pancreas to treat diabetes.
Diabetes, a capricious disease
I was 12 years old when my immune system knocked out the beta cells in my pancreas, which make insulin. At the first symptoms, I was on vacation in Paris with my family. I started to urinate like crazy and drink gallons of water to compensate. I have no recollection of the beauty of the Champs Elysees, but I remember very well all the public toilets I had to stop at.
It was 1986 and the treatment for diabetes was different then. The doctors I was sent to see said I could eat anything as long as I injected myself with enough insulin to restore balance. You can manage your diabetes and have a good life, they said. Which is not far from the truth, but it is not straightforward.
Diabetes is a capricious disease; living with and understanding it is no easy task. Normally, the pancreas makes insulin, a hormone that regulates the level of glucose in the blood. Some people with diabetes don’t produce enough (this is called type 2 diabetes, which is much easier to control), others not at all (type 1 diabetes). In either case, the body is unable to metabolize the absorbed sugar. When the level of glucose in the blood (blood sugar) drops or skyrockets, serious health problems threaten.
Type 1 diabetics
Fortunately, new medical and technological advances are now allowing type 1 diabetics like me to lead fairly normal lives. With insulin pumps, it is no longer necessary to give yourself the injections; through a thin tube that enters the abdomen, these small devices deliver a programmed and constant dose of medication. A sensor placed under the skin takes a continuous glucose measurement (CGM), which is transmitted every five minutes to a smartphone. Managing type 1 diabetes remains a full-time job. If it isn’t done right, you will feel terrible. Or you will be very sick. Or you will die.
The magic number for blood sugar hovers around 5 millimoles per liter of blood. Reaching this plateau is a challenge, even if you benefit from cutting-edge technology. There are a number of factors that diabetics need to consider when determining how much insulin to take: what they have eaten (and will eat) and what exercise they are doing (and what to do next). From stress to sexual activity, everything can affect blood sugar levels. To get by, you have to think like a pancreas – not easy, since no one knows how it does.
How about an artificial pancreas?
What if a computer could do this work for you, some sort of artificial pancreas? This is the eureka of diabetes management. Currently, the diabetic must rely on the insulin pump and CGM to control their blood sugar. Unfortunately, these two technological tools do not speak to each other. It is up to the diabetic to decide, monitor and take into account all the factors. But a so-called “closed-loop” artificial pancreas uses a code to connect these factors, just like a real pancreas would. Once connected, the loop operates in the background, just like any other organ.
Science fiction? Officially, it will take a few more years before diabetics can benefit from an artificial pancreas. But unofficially, that’s another story.
I met Kate Farnsworth and Pina Barbieri in November 2017. The two live in the greater Toronto area and are mothers of teenage girls with type 1 diabetes, aged 13 and 15. Kate Farnsworth told me about her fear when she learned in 2012 that her eight-year-old daughter Sydney had diabetes. She had then embarked on a frantic quest for information – and hope.
In May 2014, she discovered the Facebook group CGM [MGC] in the Cloud, an international network of over 30,000 members who believe that you are never better served than by yourself. Kate Farnsworth then decides to follow the instructions proposed by the group and adapts the MGC device of Sydney which she then couples to a smartwatch, which allows her to check her daughter’s blood sugar remotely, wherever she is. she is. She even manages to program an alarm to be warned when rates drop too much.
Two years later, she learned of a group of amateur coders in the United States, most of whom, themselves type 1 diabetics, were looking to improve the efficiency of their devices. By pooling their experiences, these amateur coders had succeeded in creating an iPhone program called Loop (Android created OpenAPS at the same time). Loop is not available on the App Store or through official channels – no doctor will prescribe it. Its users have to find the manual online and build their Loop app themselves. This free code paired with the insulin pump and MGC together forms an artificial pancreas. Kate Farnsworth knew right away that Sydney needed one.
No more blood sugar management
Entrusting my life to homemade software hacked by a few computer enthusiasts is nothing to reassure me. The technology sounds revolutionary – provided it works – but it’s a bit like being blindly relied on. I have lived with diabetes for 33 years and find it hard to believe that a few lines of code can understand my body better than I do.
“My role as a mother completely changed when Sydney was put on Loop. The micromanagement of her diabetes that I had previously provided was taken care of by the system which does just about everything, ”says her mother. No more worried awakenings at night for fear of low blood sugar; Loop is here for that. “I sleep through the night and in the morning Sydney wakes up most often with the same blood sugar as the night before when I went to bed,” she adds. That’s wonderful.”
“Yes, she can really sleep,” confirms Pina Barbieri.
An alarm goes off. This is Pina Barbieri’s watch. Her daughter Laura’s blood sugar rose to 17.3; this is very high. The mother texted: “Everything okay?”
- Yes, I’m taking more insulin.
I am disturbed by this mother-daughter exchange. For me, blood sugar has always been an intimate affair: shame when it was too high, pride if I hit perfection with 5 or 6, and anguish when she dived. As if a daily report card assessed my lifestyle. I was responsible for managing my diabetes and needed to keep it private. Only my doctor knew my blood sugar levels. Listening to Kate and Pina, I wondered if I hadn’t got it all wrong.
Fear makes me hesitate
For a few months, I limit myself to reading Facebook messages from the Looped group, which I joined in January 2018 and which has some 6,500 members worldwide. A thousand of them have adopted the method. Others, like me, are just curious. After receiving so much from Loop, Kate Farnsworth wanted to do her part for the community: she is the origin of the Facebook page and is one of the two volunteers who spend hours daily updating information, answer questions and offer advice.
What I am learning makes me hesitate. On the one hand, for Loop to work, you need an insulin pump that can be hacked and reprogrammed, and they are rare: when the company Medtronic noticed a flaw in the safety of its products, it changed the design. . Since, impossible to put the pump and the MGC in loop. In other words, Loop users have to find old devices that are no longer warranted. In addition, they must order a RileyLink in the United States – a Bluetooth device that allows an iPhone to communicate with the pump. When the materials are in place, they have to build their Loop app themselves.
I don’t know what to say to Pina when she calls me to invite me to join others in a Loop-making session she wants to host with Kate. She will provide me with an old pump that can be hacked. She will also leave me one of her daughter’s RileyLinks provided I replace it. The total cost of this artificial pancreas that will change my life? Two hundred and fifty dollars. The generosity of this woman whom I do not know amazes me and I thank her. But when she asks me to set a date, I stay evasive.
I decide to get started
The days go by and the dream of a Loop continues to tickle my imagination. I contacted Graham Ladner, Scientific Evaluator of the Medical Devices Directorate at Health Canada. I would like to discuss this homemade artificial pancreas with him. The insulin pump is usually considered a Class III medical device, Graham Ladner tells me, but creating a “closed loop” by making an automatic connection with the MGC puts it in Class IV, with more restrictions and difficulty. increased for obtaining market approval. Because, like humans, machines also make mistakes.
With an artificial pancreas in a loop, the MGC could for example overestimate my blood sugar at 16.5, whereas it actually stands at 7. The pump would then automatically send too much insulin, with the consequences of a significant drop in my blood sugar. blood sugar and the risk of unconsciousness.
But even with normal use, the insulin pump is not without risk. According to a CBC investigation in November 2018, these pumps have killed more people than any other medical device on the market. According to Health Canada, between 2008 and 2018, they would have been a determining factor in 103 deaths and more than 1900 serious incidents. This risk only increases when you leave it all to a computerized algorithm. “Closing the loop puts the patient at new risk,” adds Graham Ladner.
After this conversation, I find the Looped group on Facebook. To be honest, I don’t know what I’m looking for. A confirmation ? The ideal solution? I read a comment from a mother who expresses her frustration with having to manage her child’s diabetes. Loopers offer him their support and offer an avalanche of advice. My throat is tight and I break down in tears. Is it the fatigue of living for more than 30 years with diabetes? I then decide to get started. Will the Loop be more efficient than what I already have? I don’t know, but for the first time, I won’t be alone in this adventure.
So here we are on a Saturday morning to build my Loop. Kate Farnsworth hands me an old Medtronic 554 pump. Pina Barbieri hands me a box the size of a lighter: the RileyLink. Once connected, the two devices will exchange with my MGC and the Loop code to tune my artificial pancreas. Around a table, Kate Farnsworth walks us through the steps of coding. A message appears on my computer screen: “This is an experimental project and it is not approved as a treatment protocol.”
At the end of the afternoon, I transfer the app I made for myself to my phone. After connecting a few finicky wires to tiny battery packs, I activate the RileyLink. Immediately, all the data of my blood sugar and CGM appear. On the right, the screen displays the amount of insulin determined by the algorithm. On the left, a small circle lights up in green. This means that I am in a closed loop. My artificial pancreas is working.
The following days, the two women continue to guide our group. At first I feel a bit overwhelmed and afraid of forgetting something. When the RileyLink kicks in or the bluetooth goes off, I have a moment of panic before everything starts up again. The system is far from perfect, everyone agrees, but after a first night’s sleep, my blood sugar reaches its ideal value of 5.0 in the morning. The next day too. And the day after.
A life changed thanks to Loop
I have been using the Loop app for two years. Every morning, my blood sugar is almost perfect. The Looped Facebook group is growing exponentially and now has over 23,000 members. In April 2019, the Omnipod insulin pump became compatible. And in a move that surprised many, Medtronic recently announced its desire to have its insulin pumps and CGM talk through Bluetooth and the Tidepool app – in plain English, an official form of Loop.
With the changes coming, I’m curious about how Kate Farnsworth sees the next step when the government approves an artificial pancreas as good as Loop – if not better. Will she have a hard time abandoning the community she helped create? “Honestly,” she says, “I would be happy to free myself from this volunteer work.”
When the time comes, she may see things differently. After all, thanks to Loop, I no longer see my health the same way – life is more than a report card.
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