This is a very personal post, which was inspired by a recent conversation I had with @ClaudnDaye about the future of our T1 kids.
When my son was diagnosed, I had a hard time accepting that I would not be able to “solve this” for him, and that I could not take it all on me. When I realized how much time my son spent every day to do a good job at treating and planning, I got less accepting yet: how much of his life, every day, would need to be dedicated to diabetes instead of just living?
But my perspective has changed in the past year. I don’t see any prospects for a cure (check @joshualevy’s blog for more info). On the other hand, I see extraordinary progress in how technology decreases the risks of diabetes and, soon, the time spent in daily treatment:
CGM alarms have given us a better chance to avoid life-threatening lows and highs
CGM Follows have given PWDs the ability to add redundancy in responding to alarms
the very first closed loop systems are now significantly reducing the likelihood of deadly lows (predictive suspend on low)
while CGMs have actually increased, imho by a lot, the time cost of diabetes treatment (because now you can do a lot more, if you are willing to spend the time), upcoming developments already on the horizon with closed-loop systems will, in my opinion as a control engineer, dramatically improve automated self-regulation and decrease daily treatment time.
So I feel that, in the two areas I worried about most—sudden death and the time demands of diabetes—there is great progress already or very soon upcoming (the next 2-3 years), and much more progress afterwards. I believe that it will be the same as chess: the first algorithms were simplistic, but the ones we see now are better than human players. I am convinced that, in the next 10 years, closed-loop algorithms helped by specialized AIs will manage closed-loop systems better than human patients can.
I feel tremendously relieved on these two fronts as a parent: the stranglehold I felt over my love for my son has become a lot lighter, and I am so optimistic for his upcoming life, compared to how I felt at diagnosis!
But I am also more concerned. As a US citizen, I am more worried every year about whether he will be able to afford treatment all his life. As long as we are alive I have no fear: luckily, we can afford the best treatment for him. But what will happen later? Will he sometime feel the need to ration his insulin—like a quarter of US PWDs, as recently found by an ADA study? Will he have, someday, a month where he cannot afford insulin because of some stupid reason, like Shane Patrick Boyle?
Since he was diagnosed, a significant part of my life has become focused on diabetes treatment and how to do it best. Like any parent, I want his care and his future to be the best it can be. I learned all I could (and keep on doing so every day) to give him the best care we can, and to teach him how to treat himself with the best possible processes and outcomes.
Now I feel that I owe it to my son to take the next steps. I think I need to find a way to get more involved, when we get back to the States, in bringing about better care for D. But I also feel that I need to become more involved in making it possible for him, and all other PWDs, to treat this disease regardless of his (and their) financial situation. I used to think that his was primarily a technical issue—not anymore. As a technical person, I see the first area as an easier one for me to broach, but, despite my discomfort, I don’t feel that, as a parent of T1, I can ignore the other.
Here is the horrific story of Patrick Shane Boyle, if you have not read it yet: