Andrew Calabrese lost his pancreas to Type 1 diabetes at a tender age of three years. His parents Heidi and Jason decided to everything in their power to ease the suffering of their child. A software engineer by profession, Andrew’s father Jason decided to devise a system to help him with the regulation of the insulin level in his body.
Jason succeeded in building an artificial pancreas system using OpenAPS. Open Artificial Pancreas System is a free online tool developed by a Type 1 diabetic Dana Lewis in December 2014. OpenAPS provides a template as well as a toolset via the open source platform to devise systems to alleviate the suffering of Type 1 diabetic patients.
Jason learned the techniques to modify an old insulin pump to automatically regulate blood glucose levels in the body. The system was augmented with a continuous glucose monitor (CGM) sending blood glucose data to the pump. The pump uses this data to change the temporary basal rates.
Andrew started using OpenAPS to keep a tab on the insulin level in his body after consultation with his physician. Andrew even totes it along to his school. Jason is quite happy with his contraption and gushed about the peace of mind it has brought him:
“OpenAPS is there when I can’t be. It’s cut the time Andrew spends below 80 mg/dL in half.”
The OpenAPS platform and toolset has been used by more than 50 families to ease the plight of their loved ones. Though work on the commercialization of such products and systems is in the works, the lengthy due procedure keeps any significant progress in check. The techies have taken the lead and have gone ahead to bring these systems to life. Meanwhile, FDA cannot exert its control over the DIY pancreas systems because it is meant to regulate enterprises, not the individuals.
Bruce Buckingham, a pediatric endocrinologist at Stanford University, commented on the market perception of such systems:
“It is clearly for people who have some expertise in computer programming. What it shows is that people are anxious to get something going.”
Meanwhile, Jason has admitted the system is prone to vulnerabilities resulting from component failure, etc. however, he feels it is still better than nothing.
“Diabetes is dangerous anyway. Insulin is dangerous. I think what we are doing is actually improving that and lowering the risk.”
Would you be willing to adopt such a system for your loved ones suffering from diabetes?