FUDiabetes

US: these two sisters ration insulin because of cost

Worth reading: living with high BG, running into DKA… This should not be possible in our country.

The New Yorker: Living with Type 1 Diabetes When You Can’t Afford Insulin.

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And this is why we hoard our supplies. :worried:

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While clearly this piece of writing is being used by the New Yorker to raise awareness of the issue, I feel like it is troubling that they don’t offer any solutions. If all we keep doing is raising awareness, problems will never get solved, just perpetuated. They could of at least mentioned Walmart insulin (R and NPH), which while not perfect, is certainly better than dying.

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I thought the same thing. While not the best solution there are more affordable workarounds.

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In the photo accompanying the article is a person with a pump. The pump wasn’t free, and the patient knew that they were pretty much locked into an analog costing thousands of dollars per month.

There are countless T1’s who survived quite nicely on R and Lente or NPH.

The cost of modern insulins is a crime and the government needs to bring it under control with the proper laws. But the insulin that is marginally better than the formula sold by Banting for $1 is still readily available for $25.

As @Chris pointed out, why do these publications only complain and show political bias instead of offering a simple solution to keep their readers from dying? They are not doing any good service to the community.

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Not to mention the countless discount programs that every manufacturer of modern analog insulins offer. Nobody is actually paying the “list price.” The “list price” is a fallacy, it is a fraud, and that is the problem.

Unfortunately, some people fall through the cracks or don’t have the resources to navigate the overly complex system to actually get insulin for the real price…

All the problems lead back to the “list price” not even remotely reflecting the actual market price though, and the mechanisms that deliberately obscure what the real market price actually is. I agree it is time for some government oversight.

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Having a pump does not require analogs. My first years on pump were with R. But there is cost for infusion sets if not on omnipod. Agee, if I could barely afford insulin, I would not be on pump.

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This is true for the insurance companies for sure, and a scandal. But unfortunately it is not true for individuals, in particular underinsured or uninsured people with less access to transportation, not savvy about the net or system etc. The “cracks” you mention are huge, and there probably are 10s of millions of those people who do pay list price imho. In fact, we had to buy insulin a couple of times off insurance due to a snafu and we paid full price. Shane Patrick Boyle, a young man with plenty of internet savvy, died because he shorted the insulin he could not afford at list price.

Imho, the simple truth is that nobody should be allowed to go without insulin in our society because of cost, and it should be braindead simple to obtain it when you need it. Anything short of that, imho, is a violation of human dignity and human values.

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I believe the list price is used.

An entity purchasing a drug with no contract can be required to pay the list price. This is the hammer. The contract is the stick.

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I agree with this. And I wholeheartedly think the way to accomplish it is to address the insurance pricing fraud that we’ve seemingly accepted as normal in the USA…

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I thought that too.

I wondered if the print edition had a call out where useful information might’ve been listed and that got lost in the online article. I was sad there wasn’t more of a suggestion.

I read the article aloud to EH and mentioned that I wished we could more easily connect with people who needed insulin, as we have a back up supply and could pass some along. But then again I believe that would be a federal crime or I would be considered a drug trafficker or some such. Made me sad. There is enough insulin out there. Getting it to the folks who need it is the problem. Hard to see a problem with a known solution that’s not able to be used by everyone.

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Here’s a story about " The human cost of insulin in America" https://www.bbc.co.uk/news/world-us-canada-47491964

I picked up on one observation that was new to me, namely that some people are allergic to the Walmart R and NPH, so they don’t have that “easy way” out of trouble.

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Thanks for sharing.

At the end, I read related article on study using powdered insulin, with babies at risk of diabetes, to prevent it. Hadn’t heard about that before.

Stopping Type 1 diabetes from birth

https://www.bbc.com/news/health-44777939

“The idea is to train infants’ immune systems by giving them powdered insulin to offer life-long protection.”

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I wasn’t allergic to NPH, but I was allergic to Lente (prompting my switch to NPH back in the day), just as I’m allergic to Levemir. I suspect both are not exactly true allergic reactions, but rather that both insulins trigger mast cell reactivity (which I’m prone to). Either way, definitely one of many reasons why it’s a problem if the only way people can obtain affordable insulin limits them to one type of each.

Furthermore, while many people can afford $50/month for insulin, or whatever the Walmart pricing comes out to, that is still not exactly “affordable” for all people.

Additionally, it is pretty messed up if the poor and/or underinsured diabetics in this country, who are potentially those with least control over their diets and schedules, are regulated to insulins that require incredibly regimented lifestyles to be effective and safe to use. This group likely includes people with limited access to doctors/medical providers who can help them understand how to use these insulins, people working jobs with fewer protections (or that ignore protections) regarding breaks for food, people who can only afford and/or only have access to highly processed and very high carb foods, and people who may be food insecure and not even have a steady supply of food. In many ways, these are the people who need modern insulins the most to deal with their realities, yet have the least access.

So yeah, it’s super weird that articles and people seem to ignore the existence of R/NPH sometimes, but access to the Walmart insulins doesn’t mean insulin access isn’t a super serious problem, and one that’s unlikely to be fixed unless a lot changes.

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Endos, primary docs and urgent care places should be aware of this, and also have some on hand to give away.

But no… they would be liable and responsible if that person didn’t know how to use these insulins. Its a vicious circle. They may want to help but may be prohibited by their practice if person is not their patient.