Big Up to all the women who used programming to hack medical devices and enabled their loved ones, themselves, and people living all over the world, to become actors of their condition, to live a better life everyday, and live longer.
Thanks to the Open Source and the #WeAreNotWaiting community, they have made available to those who are ready to take up the challenge, a technology that pharmaceutical companies are taking a long time to develop, and which they are now taking a lead from.
These inspiring women, who are driving innovation by, and for, patients, having designed or helped improve the DIY artificial pancreas, are Dana, Katie, Cal, to name a few.
Type 1 diabetes, which accounts for 5-10% of all diabetes cases, is often confused with its distant relative, type 2 diabetes, which dominates at over 80%. Type 2 is characterised by insulin resistance as insulin is still produced by the pancreas.
Type 1 is an autoimmune disease: antibodies mistakenly attacked the beta cells of the pancreas, the ones that produce insulin - the hormone without which we cannot live - and destroyed them completely.
The onset of the autoimmune reaction that causes type 1 diabetes depends on a combination of genetic and environmental factors, and infections with enteroviruses.
This chronic disease, since insulin must be administered for life, often develops in childhood, though it can occur at any age. People living with type 1 diabetes are more likely to trigger other autoimmune diseases, such as multiple sclerosis or even rheumatoid arthritis.
Increase over the last 20 years of 4% of cases per year with a high prevalence in the under 5 year olds
High mental load
180 treatment decisions made on average per day
Insulin is a high-risk hormone: a few units too many, or too few, can be fatal
This year marks the centenary of the discovery of insulin in 1921
"Ghost population"
For every 2 person living with type 1 diabetes, a 3rd should be alive if they had had access to medical care
Increase over the last 20 years of 4% of cases per year with a high prevalence in the under 5 year olds
The adventure of DIY closed loop systems, also known as DIY artificial pancreas systems, began in 2013. Dana Lewis first created a solution to make her own continuous glucose monitor (CGM) alarms louder. Within a year, she was able to “close the loop” and create a hybrid closed loop artificial pancreas system to automate microadjustments of insulin delivery. Dana looked to the open source world as a way to pay it forward and enable others to self-build their own systems.
Closed loop systems are the holy grail for people living with type 1 diabetes. They allow a considerable improvement in quality of life, in the short and long term: less hypoglycaemia and hyperglycaemia, more time in the glyceamic target range, a reduction in hbA1c, the possibility to exercise more easily, to have a better sleep, and to alleviate some of the mental load.
Loop is an iOS app. It has been developed as an open-source, shared project. The project continues to be a labour-of-love by a community of users - maintained and improved by volunteers.
The Loop app is an insulin delivery system that uses commercial and open-source hardware and software technologies.
The system bring together:
- an insulin pump
- a continuous glucose monitor (CGM)
- an insulin dosing algorithm
- an iPhone and/or an Apple watch
- a RileyLink, a little device that helps them speak to each other by radio communication and Bluetooth
The algorithm predicts future glucose based on basal-rate schedules, carbohydrate intake, insulin on board, and current CGM readings. These glucose forecasts provide the app with the information needed to recommend a temporary basal rate to attain a targeted glucose range in the future.
The #WeAreNotWaiting community is people from all over the world, helping each other on a daily basis via social media - in real life meetings as well, before Covid came into the picture. Making the decision to build your own Loop or OpenAPS system, because it is experimental, is often preceded by a long mental journey. Then you have to gather the components, some of which can be hard to come by, such as vintage insulin pumps with the compatible firmware.
It's also a real challenge to build your own app, install Homebrew, get familiar with Xcode, GitHub, manage your own data in the cloud building a NightScout website - one of the cornerstones of the DIY closed loop systems.
The pioneers of these artificial pancreas systems helped each other, and passed on their experience and expertise. This willingness to share is the essence of the community.
A big thank you to all the inspiring women who keep it going today: Dana, Callie, Katie, Hanne, Melody, Andrea, Adriana, Katarina, Melissa, Mary Anne, Renza, Saskia, Justine, Maite, Dawn, and so many others.
