T1D with no insurance?

Hi all,

I’m working on a film that portrays someone struggling with type 1 diabetes. We’re eager to represent this onscreen, as we feel it’s rarely depicted. In doing so, we want to make sure we convey the struggle of living with T1D with accuracy and authenticity.

Does anyone have experience dealing with T1D during a lapse in insurance or without proper coverage who would be willing to answer some questions on what that’s like?

You buy insulin over the counter (no prescription required) at Walmart. This type of long acting insulin is called NPH and was used heavily in the 1990’s.

Syringes can be more of a problem, depending on what state you live in. States often require an Rx for syringes to prevent drug use. Diabetics who live in states that are hard on syringe access can expect problems. In places like Minnesota, where pharmacists are required to supply (even drug addicts) with some syringes, they can get by a little easier.

But, the opioid epidemic has effects on people with valid prescriptions and insurance, too. Patients aren’t permitted physical possession of their prescriptions. Thats because people were forging Rx’s like crazy to gain access to opioids. That makes things more difficult for diabetics. Patients may never get to see their Rx’s or their expiration dates. Paperwork gets lost in pharmacy computer systems and patients have very little control over how this information is managed. I loose access to my supplies somewhat frequently because of that.

I went from ages 18-36 with no issuance coverage. I only finally got coverage 3.5 years ago, opening up the door to better treatment options. So I could offer some pretty informed insight.

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Thanks for your response Robyn. Would it be possible to connect with you somehow (maybe by e-mail) to ask some questions?

As background for what you’re looking at, a couple of things that are frequently misunderstood:

  • “Insulin” isn’t just one thing. There are multiple formulations with different durations and effect curves. You have to know a lot about how your own body works (insulin-carb ratio, correction ratio, other stuff) as well as how the insulin you’re taking works in order to use it safely.

  • “Walmart insulin”: basically the stuff those of us diagnosed back in the 80s to late-90s were on, and it is a very different beast to the analog insulins developed since then. Harder to predict effect times, thus more likely to cause dangerous lows (I speak from 20 yrs experience). It can keep you alive, so yay, but it isn’t like swapping in the generic OTC version of Tylenol or whatever. You have to organize your life around it.

  • “Diabetic coma”: this pseudo-medical term drives me nuts because I don’t know what the person means by it, especially when used by reporters or other non-diabetics. Are they referring to Diabetic Keto-Acidosis (DKA), which results from lack of insulin, or hypoglycemic unconsciousness—what is usually portrayed in TV episodes—which can result from taking insulin? In the case of rationing scenarios, DKA would be the presumptive interpretation, but not always, because allowing yourself to run “high” to save money but not so high as to kill yourself is not a straight-line thing, like adjusting a thermostat. We call it the roller-coaster phenomenon, when trying to control peaks can result in deep valleys, especially if you’re trying to use something you’re not familiar with like the Walmart stuff.

  • Hoarding: ALL T1s hoard, or if they don’t, they should. Applies to all supplies but insulin most of all. Because guess what: if you run out, you can die. You’re always aware of it, even if not immediately threatened by loss of insurance coverage. That’s why it’s humorously referred to as the “zombie apocalypse” stash: “because you never know…” It becomes almost neurotically hard to throw stuff away—kind of a perennial topic on these forums actually. So even if we’re not rationing, we’re all living under that shadow to a greater or lesser extent.

You could do worse than to search “rationing” on this and other diabetic forums to see how we discuss the issue and the media reports around it. There’s a lot of sympathy, because “there but for the grace of god,” but also an oddly judgmental strain in some of the comments you see. I think that’s defensive in a way: reassuring ourselves that WE’D know what to do even if those other poor saps couldn’t figure it out.

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It would be interesting if your key person with T1D participates in on-line or in person interactions with other diabetics.
There are many with insurance that still don’t get good care, for various reasons, lack of insurance is just one situation that impacts ability to get care.
Awareness of low cost alternatives takes interactions with others, good search techniques and sometimes a doctor with “samples” that knows you’re in need.

Insurance (or lack of) is just a small piece of our daily challenges.

I was T1 without insurance for a decade. Buying OTC insulin (this was the 90’s so mostly the old fashioned insulins, not the ridic OTC price for modern insulins we read about), test strips, trying not to get sick, unable to afford a doctors appointment, dang sure unable to pay for any lab tests. The “list price” (what you pay if uninsured) for lab tests are INSANE.

I went through my formative years with only catchphrase insurance (hospitalization, surgery etc…)and Insulin, tests, test strips, and doctors appointments were all affordable. Then low behold insurance became involved in every part of Healthcare and suddenly nothing is affordable. What’s wrong with that picture?? There’s the story.

I had a time where I had no insurance.
I had a pump so I started pumping regular insulin because that’s all I could get and afford at that time.
The pharmacy would sell it with no script.
I also cut my finger testing to once a day. The price has come down a bit for those.
But it was $1 each and once a day was all I could manage.
I would also reuse my cartridges and tubing.
I would buy infusion sets from a website located in Mexico.they seemed cheaply made but it worked.
Luckily over that 6 months I never needed to go to a doctor otherwise I was not going to have any way to pay for it.
It’s like a gigantic ponsy scheme. You need to pay a doctor to get access to things that have prices that are so inflated, no one could pay for them.
Insurance was not possible because if you are diabetic you can’t get insurance.
Except until Obamacare. Now you can but it is still crazy expensive.

If I paid for my monthly needs it would be about $3000 per month.
The system is set up so that we can’t afford it, and if the pre existing rule of Obama care is remove by the Supreme Court, then we ar back to being uninsurable.

It is a real and anxious and scary life to be diabetic especially in the US.
It seems like every year the insulin prices go up and they threaten our insurance coverage.
My favorite moment is when the president made a statement that insulin was so cheap it is like water.
Yes if you pay $400 for 10ml of water. 3 or 4 times a month.