A DIY diabetes kit

There isn't really a simple answer to the question. The insurance premiums themselves will depend on your job, the employee cost share (the percentage of the premiums that you pay with before tax dollars).

Or if you are buying your own plan through the ACA, the cost will depend primarily on your family income. The unsubsidized cost depends on zip code, sex, age, and whether you smoke tobacco, but assume $300 per month per adult, $150 per month per child. The subsidies which reduce the cost of premiums and also out-of-pocket costs, they start at effectively 100% if you earn $0, and phase out as your family income goes up to about $80,000.

Once you've paid the premiums, then you start paying for the care you use in terms of deductibles, co-pays, co-insurance, up to some annual out-of-pocket maximum. The details depend on the plan, but the basic rule is you can pay more premiums and your out-of-pocket maximums will decrease. But, doing the math, you can rarely "save" month by paying more in premiums for lower maximums, even if you know you will max it out, since insurers know that it's mostly sick people who will opt for the higher premiums in the first place. But it is convenient to only have to send one check a month, instead of constantly writing checks for every script, appointment, etc.

If your co-pay is, let's say, $25, expect to be paying that amount ~15x every 3 months for T1D. Everything is it's own script (blood strips, ketone strips, needles, glycogon, insulin, lancets, etc.) so you get hit with a lot of individual $25 co-pays, although they are not all being filled every month.

If you end up having to go to the ER after a particularly bad low, expect that could max out your out-of-pocket expenses for the rest of the year. So keep an eye on that annual out-of-pocket maximum, which typically will be $5,000 - $7,500. After you hit that maximum, all other benefits are paid 100% by insurance. For a particularly bad year, it helps to note, the family maximum annual out-of-pocket will be 2x the individual maximum.

Another factor is if you want to use the latest tech (CGM, Pods) your insurance likely will cover it, but not always, and there's probably a 20% "durable equipment" co-pay (which counts toward your maximum). This can increase costs for a year you are buying new expensive equipment to get started.

If you are getting insurance through work, and you lose your job, you are allowed to continue paying the full share of the premiums and keep your insurance, through a program called COBRA. That's worth it especially if you've maxed out your out-of-pocket and there are a few months left in the year where you can get 100% coverage. Otherwise, it's usually cheaper to switch to an ACA plan.

Bottom line, fully un-subsidized insurance costs for a family actually using the benefits (paying most if not all of the out-of-pocket maximums) are between $20k - $30k per year. Most Americans don't realize this because the ~$15k premiums are part of their pay package but don't really show up clearly on the pay stub.

Yes, I should have mentioned it. We had a sensor pile. For a while they had us send them back (or was that just the OmniPods?) and eventually they started just shipping replacements whenever we bothered calling.

I had a particularly bad experience with the G4 CGM. I know that some people do actually really like the device. I don't know if it's that my kids are stick-thin and consequently don't have many good insertion points, so the sensor would more likely than not be in muscle tissue, or any number of other possible reasons... But I spent much more time cursing Dexcom's name and holding back the desire to throw the damn thing across the room than actually reading useful data.

Sort of different problems. People are definitely working very hard on b-cell replacement with stem cells, there was a cool nature (I think) paper a few months that I can't find now. Definitely would be Nobel-prize worthy and would help a lot of people.

Yes, I have lived with relatives with diabetes and understand that it's quite complex. I don't think anyone with diabetes would suggest that it should be ok to just start taking insulin without a doctor involved, which is (to my understanding) the basic argument for whether a drug should require a prescription or not. You can make a separate argument about whether it should be a longer prescription, or about the failings of a system where seeing a doctor at all is prohibitive for some people, or the fact that the medication is outrageously expensive (which is not directly related to the need for a prescription at all).

This is all completely valid and useful advice, but just not really for infants or young children. You can weigh out to the gram every carb on the plate, and dose 15 minutes before eating, but you never know how much they'll actually eat. So then there's things like planning the "backup food" you are going to bribe them with to cover the carbs they've already been dosed for. Similarly, you can pack a lunch and instruct the nurse on how to dose it, but unless they're bringing their empty plate back to the school nurse for inspection, it's all just guessing and hoping.

Clearly there are different phases to the disease. There is no amount of testing, diet, and routine that will keep my 4 year old within 100-150 range for 24 hours straight, let alone a week. Yesterday I saw him fall from 423 to 72 in 45 minutes with no bolus and only .25 units IOB. Activity level alone doesn't explain it, and the doctors even at Joslin Diabetes Center are not particular great.

For example, a couple months back my son was having persistent lows even after what we were certain were accurate tests and dosing. We called to discuss adjusting carb ratios, and they tried to tell us to go from 1 unit for 30grams to 1 unit for 25 grams. It took 30 minutes on the phone to explain they were telling us to go the wrong way. We ended up going all the way up to 1 unit for 60 grams to stop the lows that week, and then gradually brought it back down to 1 unit for 30 over the next month. Was it a virus? Growth spurt? No idea...

Another common occurrence, testing before dinner and being in range, dosing 18 carbs for a meal of chicken, broccoli, and peas, testing before bed and seeing slightly above range but with IOB (insulin on board, meaning he's still burning through insulin that was previously dosed) and the calculations saying he should end up near a 150 target. Then test again 2 hours later (e.g. 10pm) when he's at 0 IOB, and some days he's at 420, other days 60. Same meal, same portion sizes, etc.

We've also had "fun" watching blood sugar plummet in the middle of the night even with 0 IOB and the basal fully suspended. How can blood sugar fall below 60 while he's sleeping with zero basal insulin AND zero bolus insulin in his system whatsoever? Haven't heard a good answer to that one yet...

The point is, T1D for kids means constant vigilance, make no assumptions, don't trust numbers from a doctor you don't understand and agree with, and be ready to question and adjust expectations month-to-month.