Millions of people around the world have type 1 diabetes. But as anyone with type 1 diabetes knows, there isn't much technology available on the market for diabetes. So, people with type 1 diabetes, including U of A graduate student Jonathan Garfinkel, decided to take matters into their own hands, with the hopes of pushing the health-care industry and regulators to develop better treatment for type 1 diabetes patients.
What did they do to improve treatment methods? Well, the patient-led movement decided to use free instructions from the internet to build an artificial pancreas. "Diabetics have developed, programmed, and are now living on the most sophisticated form of insulin delivery currently available in the world," said Garfinkel, a Ph.D. candidate in the Faculty of Arts. Garfinkel documented his own experience as a type 1 diabetic who was living through the technological advancements.
So what did Garfinkel do? He joined a Facebook group and downloaded the instructions on how to build the "loop." The loop is a system that connects a smartphone to his insulin pump and round-the-clock glucose monitor. Typically, Garfinkel would have to monitor and adjust his own insulin doses by pricking his finger for a glucose test. But through this DIY technology, Garfinkel can have his smartphone measure and adjust his insulin dose for him, replicating the function of a real pancreas.
The Facebook group has around 12,000 followers and invented the hashtag #wearenotwaiting. This hashtag is in reference to the fact the type 1 diabetes community is impatient and seeking better systems to monitor their condition. At the moment, the only commercially available closed-loop system is in Canada. Other than that, no other technology exists or is available for patients.
"It's changed my life," Garfinkel wrote.
Garfinkel used to struggle with controlling his diabetes at night. This would result in him waking up with dangerously low blood sugar levels, which would cause sweating and confusion. "For the past two years, since I've been on the Loop, I've had consistent overnight blood sugars," Garfinkel said. "The technology has lessened the burden."
And Garfinkel isn't the first person who has tested this DIY treatment. "I've known for a couple of years about parent groups who have hacked into their children's glucose sensors so that they get a text when the child has low blood glucose levels, so they can call the teacher and make sure the child is safe," said Light, a pharmacologist who is director of the Alberta Diabetes Institute and Dr. Charles A. Allard Chair in Diabetes Research. "This is the logical next step."
What the health-care system is beginning to realize is that this DIY remedy is outperforming any products on the market. "What's really interesting is that this bio-hacked loop system is actually outperforming many of the commercial products, and that's driving the industry to make better products and to come out with them faster for regulatory approval."
Light isn't shocked by the fact the patient-led DIY movement has created improved and effective treatment methods. "Within a few years, I think we will see mainstream, commercially available, Health Canada-approved systems that are better than the current versions." This truly shows the power and effectiveness of patient-led therapy. "This is a patient-led therapy," said Garfinkel. "It's free and was developed with a pay-it-forward mentality...We patients aren't angry, we're just taking the initiative. We don't want to wait for the industry to develop what we need."
And for patients who have been waiting years for change, it's finally come. "It's kind of giving Health Canada and the pharmaceutical companies the middle finger," Garfinkel said. But is the loop system illegal? As Garfinkel explained, it's not illegal, but it's not government-approved either. The loop system remains in a gray area. "Nobody is selling anything—it's all open source," Garfinkel wrote in the Columbia University journal Intima: A Journal of Narrative Medicine.
Light is currently working with the Alberta Diabetes Institue to research and understand the loop system and how it can be developed further as a diabetes management technology. "A better glucose sensor is our ultimate goal," Light said. "It's high risk but potentially high reward, so we're working on that project right now."