Tuesday, November 28, 2017

Living with diabetes

I was seeing a lot of discussion of insulin on Twitter last week, much of it related to Alex Azar's nomination for Health and Human Services, and this article:

It especially focused on the two deaths mentioned: Shane Patrick Boyle, whose GoFundMe for insulin was $50 short, and Alec Raeshawn Smith, who aged off of his parents' health plan and was trying to ration his insulin.

I did try going without insulin once. It only took me a few days to end up in the emergency room. That's what you call false economy: when attempts to save a little cost a lot. I tried because I was uninsured at the time.

Insulin was a big expense even when insured, with pretty hefty co-pays. Uninsured it was going to be impossible. My doctor provided some samples, but in the last appointment I could afford she ended up recommending I start using Relion insulin. This is a Wal-Mart brand.

Previously I had avoided shopping at Wal-Mart because of their business practices and their destructive nature. Currently they are the only way that I have insulin (and pants). I can get by on about $75 per month. Otherwise it would be closer to $1000. I still need help from family members affording the Relion, but without it I would be dead.

It is great that Relion exists and is affordable, but there are some drawbacks.

Least important is that it only comes in vials, not in pens. That is less convenient for travel and dining out, but I don't do those things as much as I used to anyway.

It's more important to know that there is not a straight conversion. Previously I had been taking a long-acting insulin (Lantus) once nightly, plus a fast-acting insulin (originally Novolog, but my insurance had me change to Humilog) before meals.

With Relion, I take both of them twice a day. There is a greater probability of my getting low blood sugar between doses, so I have to be careful. I am lucky in that my body usually does a good job of telling me when my blood sugar is dropping. Having it sneak up on you can be really dangerous.

Since the Relion works differently, it shouldn't be at all surprising that you can't just convert the doses straight across. My doctor worked out what would probably be the right doses. It doesn't require a prescription, so anyone can go in and buy them. Without some medical supervision, though, that can be really dangerous.

Also, while Relion works -- and maybe this is just my no longer supervised dosage -- I don't think it works quite as well as what I was previously on. I am not sure because I can't afford test strips.

I added that parenthetical note about the change to Humilog for a reason; my insulin was not changed nearly as often as my glaucometer, the device I use for testing my blood sugar.

That would be worse if they weren't always giving out free glaucometers, but that's the thing: they give you free meters so you will buy their strips. The insurance company tells you which one to use. Last time they insisted on OneTouch Verio, and gave me one. No problem, except now that I am uninsured I have noticed that I seem to need the most expensive strips.

It's weird that an insurance company would specify a more expensive product, except that there are probably some sort of kickbacks or deals going on, where it is made worth the insurance company's while. It is not great for those who become uninsured.

I admit, I was not always scrupulous about testing back when I had strips. Sometimes I would just forget, especially when things got hectic. It was easier because when I was testing regularly the results were generally good, but you can't assume that everything is working fine, especially when things are hectic enough that it could be affecting sleep or beverages or things like that. I have never been a perfect patient, but there's a big difference between just forgetting to test my blood sugar and not being able to afford it.

I do need to get back to the doctor soon. That's one expense to worry about, but also, they will want to see what kind of scores I have been getting. They can order an A1C test (labs are so expensive) but they will want meter results. It's stressful.

And I am one of the lucky ones.

Which reminds me of the two who died. I don't know this, but I see that at least one is younger, probably both, and I wonder if they had Type 1 or Type 2 diabetes.

I only mention that because it is common to associate diabetes with obesity and feel that these are self-inflicted problems. So here's something to think about. While they always mention the rise of Type 2 diabetes in conjunction with the growing obesity crisis, I never hear them mention that Type 1 diabetes is also on the rise, perhaps because there is no easy explanation for it. It is nonetheless true. I know several parents dealing with it now, and they hate having their children be sick, and they did not cause it.

It's just something to think about.

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