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Foreword by Aaron Kowalski

Making a difference and improving lives – there are few goals more satisfying and powerful. Since I starting at JDRF, I’ve been fortunate to have participated in a transformation that has occurred over the last decade or so and is now a global focus for me. This revolution has improved the lives of thousands of people around the world – including my brother and me – and has challenged the status quo. It’s an honor to write a foreword to this book and for a true visionary – Dana Lewis – who has and continues to make a massive difference in the field of diabetes and has improved thousands of lives playing a pivotal role in a key component of this revolution: the mainstreaming of do-it-yourself (DIY) automation of insulin delivery.

In 2018, I was invited to speak to the employees at a large diabetes company and two children and one young adult spoke beside me to the group about the challenges of living with type 1 diabetes. During the Q&A an employee asked the young woman what it was like to go through high school with T1D and she began to cry. She noted that she was bullied for having diabetes and that had caused her to stop dosing insulin when needed at lunch and other times, and ultimately to completely hide her diabetes. Her glucose levels careened to dangerously high levels and she had to withdraw from school. Fortunately, she has recovered but was scarred by the experience. I highlight this story because it so painfully and succinctly crystallizes the underappreciated aspects of diabetes management, and a huge unmet need for people with diabetes. That is – diabetes is more than glucose control! Diabetes is stress, it’s anxiety, it’s sleep, it’s stigma, it’s carbohydrates, it’s family dynamics, as Dana describes it is fear of hypoglycemia … and it’s impossibly variable. For years I’ve been arguing that diabetes treatments must address both sides of the equation – glucose control and quality of life. Dana and her now-husband Scott saw this and have developed a solution that finally does that: and the response from users has been incredible!

Now, you may be asking why the former lead of the JDRF Artificial Pancreas (AP) Project would be touting DIY systems (actually I hope that you aren’t, but will address the question nonetheless!). It’s because DIY and commercial systems are not mutually exclusive! JDRF has deployed significant resources to speed the development and availability of AP or automated insulin-delivery systems (AID systems). I’m thrilled that Medtronic launched the 670G and have a number of colleagues and friends benefitting from that system tremendously. Having Beta Bionics, Bigfoot, Diabeloop, Insulet, Roche, Tandem, Tidepool, and others developing systems is wonderful. That said, having a robust DIY ecosystem has been a tremendous addition to the space. The hashtag that crystalizes the sentiment in the community is #WeAreNotWaiting. We needed these solutions years ago, not years from now. The DIY community took the bull by the horns, integrated their medical devices with cell phones and watches and other non-medical technologies, and began to rapidly iterate on problems and develop and evolve solutions that added value to them – the community. These solutions address both sides of the equation – they improve glucose control and they reduce the burden of diabetes management!

I must confess that when Dana and Scott told me that they were going to launch OpenAPS that I urged caution. This was despite seeing countless hours of study data demonstrating the safety and efficacy of hybrid closed-loop systems in outpatient real-world clinical trials. But patients developing, testing, and sharing their own systems was uncharted territory and a bit scary! However, what Dana, the DIY community and many people with diabetes will tell you – and I fully agree – is that living with type 1 diabetes, day in and day out, and being your own control system is scary too. The data supports that. In the JDRF CGM trial [1], the average person in the trial spent nearly 10 hours a day above 180mg/dL and over an hour every single day below 70mg/dL, even with significant work and effort (the other side of the equation!) [2]. Hypoglycemia – every single day! The T1D Exchange has shown this quantitatively as well. Unfortunately, severe hypoglycemia is still much too common. Living with diabetes – even with a CGM and a pump – is still very difficult and better tools are needed.

AP systems are not a cure for diabetes. They still require site changes, CGM changes, tweaking and, particularly early in their use, some patience. That said, as Dana points out throughout and in the “Success Stories” chapter – the results can be transformative. My own experience is just that. I use a DIY AP system and can’t imagine how I did it before. Despite nearly 35 years of T1D experience and having worked in diabetes for nearly 15 years it’s still a very hard disease to manage! The impact of an APS system in my life has been less hypoglycemia, a better A1c, less work to get there, and most impactful – better sleep. The near normalized overnight glucose levels never get old. It’s the first time that both sides of the equation have been improved simultaneously for me – better glycemic control and better quality of life.

Congratulations Dana for making such an impact. DIY AP systems are improving people’s lives for the better. This book is an incredibly comprehensive view of how we got here, what these systems are, considerations on potential use, and a detailed view of what to expect if you do adopt an AP system (DIY or commercial). I often say that diabetes is a club that we don’t want anyone to join. But, you will find some incredible people in this club. Dana and Scott are two such people. So are the countless others who have contributed to the development of novel ways to help people with diabetes. The connectivity and technological advances enabling APS are amazing. JDRF remains committed to one day seeing cures for T1D alleviating the need to wear devices and dose insulin. In the meantime, we need better tools to help people to achieve better outcomes – both improving glucose levels as well as easing diabetes management burden. It’s amazing to see this happening so rapidly today.

Aaron J. Kowalski, PhD
JDRF President and CEO
Co-founder of JDRF Artificial Pancreas Project
T1D Dx 1984, Brother T1D Dx 1977

[1] Juvenile Diabetes Research Foundation Continuous Glucose Monitoring Study Group. Continuous glucose monitoring and intensive treatment of type 1 diabetes. N Engl J Med. 2008; 359:1464-76. Epub 2008 Sep 8.
[2] Foster et al. State of Type 1 Diabetes Management and Outcomes from the T1D Exchange in 2016-2018. Diabetes Technol Ther. 2019;21:66-72. Epub 2019 Jan 18.

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