A $250 Biohack That’s Revolutionizing Life with Diabetes

Yes, the OmniPod has no direct connection to the Dexcom CGM, I have to observe BG moving up and enter the number into the OmniPod for it to calculate a correction dose. So, for example, overnight this could still mean programming multiple corrections throughout the night after a slow-carb hard-to-dose meal.

For the last year we’ve been going to Clara Barton camp which is for kids with T1D. Most of the counselors are also living with T1D and one night they did a panel with several of them and a room full of parents.

We got to hear some very important perspectives, but one thing we consistently heard is that every kid with T1D will go through these burn out periods.

While of course it’s a health concern and we never want to see those high numbers, there will be time periods where blood sugar control slips and the A1Cs head up and it’s a totally legitimate reaction as a teenager to be seeking some space from this condition which just never lets up and insists on setting us apart from our peers multiple times throughout the day.

Just like us software engineers will hit a wall and “burn out” from pushing too hard for too long, I think it’s not possible for the human brain, certainly an adolescent brain, to handle the constant never-ending burden of carb counting, dosing, checking, correcting, day in and out.

Switching devices might help, but of course is also a massive investment in time and energy to come up to speed on a new system, nevermind the financial side of it.

One thing we heard from several of the counselors was that in those periods of burn-out, they didn’t need their parents to “fix” anything and often rushing in to try to make changes to fix it ended up counterproductive because it’s ultimately not something that can be fixed but just be overcome. They didn’t need to hear how important it was, they knew that better than we as parents even. Burn-out is a real thing that they are entitled to do. Listen, let them vent, let them cry, let them cheat even if it causes a temporary high, not because that’s the lifestyle you want to encourage but because somehow you have to find these moments to get space and control and feel like it’s not the T1D dictating everything all the time.

Even with OmniPod which is a neat little device, there are weeks when one child will just say, “You know what, I just really don’t want a pod on this week” and we pull out the Lantus from the back of the fridge and do injections for a few days, and yeah BG control goes to shit, and then we go back to the pods with renewed appreciation for the convenience, yes, and the trade-offs.

The Dexcom CGM is cloud connected, and of course you configure which devices can see your BG and also what times of day it’s shared. So we also heard some interesting and at times hilarious stories about the power struggles of college kids sharing (and not sharing) their BG numbers with their parents.

Most importantly just know burn-out is universal and inevitable and also will pass.

Anybody knows of other projects like this?

Basic principle is to try to build new habits of how we eat gradually changing only 1 or 2 things every week and re-enforcing what works/cutting what doesn't. Typical diets (in my community) are 70 percent carbs, 30 percent veggies. We started by basically reversing this ratio. We also completely eliminated sugar & processed carbs (ie. flour - basically no breads & only whole grains) - but apart from this, I didn't fundamentally change what I ate. Then we progressively started reducing eating window over 10-12 weeks to < 6 hours in a day and started adding 2/3 day fasts. However, there are many routes & it works best if customized to individual.

And what do you suggest we do when an open-source "biohack" results in something like this ?

https://en.wikipedia.org/wiki/Thalidomide

Note the mistake made, and just how subtle it was. During testing a somewhat more ad-hoc process was used to produce the drug that did not result in the bad isomere, and then it was sold with multiple isomeres in the actual drug. Regulators at the time thought that isomeres did not matter and it took years for the effects to become clear. Of course regulators did not test for things they didn't know about. Neither did the companies (not just one). Crucially the drug was NOT tested for the effect on pregnancies (and was therefore not to be taken by pregnant women, like many drugs and even some non-drug products like famously alcohol).

Furthermore: there is at least some amount of "guilt" on the part of some of the mothers: the medicine was NOT approved for use during pregnancy, and stated this.

Result: >10.000 crippled children.

Where is the guilt to be placed for this incident ? I would argue that the primary guilt is with the regulator (government) and a small amount with (most of) the mothers for taking unapproved medicine, with the rest of the mothers following doctors' prescriptions (which of course means those doctors prescribed unapproved medicine). Needless to say, the company was blamed, and forced to pay (essentially in trade for not going to prison). The German government denied any responsibility, and several other governments (famously Spain) went further: they denied anything had happened at all.

So let's say there is a timing bug in this "open source pancreas", and it starts pumping insulin into the patients bodies without cause, say at the unix epoch transition. I would guess that at least half of them won't survive.

What happens next ? Given the Thalomide incident we can make an educated guess: whatever the law says, and despite patients "accepting the risk", even when the patients explicitly make mistakes in the treatment, you can bet the government will go after whoever they can arrest, and force them to pay millions of euros, or throw them in jail for the rest of their life.

People cannot be trusted to accept responsibility for the result of picking their own treatments, even when fully informed about the risks.

You're sort of skipping over the bit where a bug in the software (or a hardware issue) kills the user. That's the crux of "being blamed" and regulation.

You might say in response it will "almost never" happen, but when it happens to your loved one it most certainly matters a lot.