A heart-breaking story…
These stories anger me. BUY THE $25 INSULIN AT WALMART! It’s only $25!!! I’ll buy it for you if you can’t afford that!
That’s the first thing every person diagnosed with diabetes needs to learn.
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I’ve been thinking about this story and getting progressively angrier and angrier. This man did not have to die. I hate the state of insurance and health care in our country; I think insulin price-gouging is absolutely unethical. But given that it is what it is, every person, when they are diagnosed in the hospital, should be given an emergency insulin access plan, which is written out, step-by-step, and put in the same binder we have for other basic rules.
For people with a certain income, they need to be given phone numbers with step-by-step instructions for signing up for low-cost rebate cards if possible. They need to be told about Walmart Insulin and if possible given instructions on how to transition to R if they can’t afford Humalog or Novolog. They need to be told if there are endocrinologists in the area who have samples they can access on short notice. And everyone needs to know the rules in their state for how they can get emergency insulin without a prescription.
There’s a lot to absorb in the hospital, so I’m not sure everyone should go over and memorize every page of that information, but IT SHOULD BE GIVEN. I think given how common insulin rationing is, these contingency plans should be a huge part of the education in the hospital. We’re given a binder with sick-day rules and what to do if we have ketones, even though most people won’t encounter that in the first year or two of diagnosis – this should absolutely be part of that.
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@Sam I agree with your sentiment, and it angers me too, but I wonder if many people do not realize they can buy Walmart insulin OTC with no Rx. Most people I think equate insulin as an Rx only item, so Walmart doesn’t become an automatic part of the solution.
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Part of the problem may be that, from what I read on these forums, many (most?) people diagnosed with T1D as adults aren’t hospitalized. I could be wrong, but it seems that most kids seem to get a few days of hospital admission to get stabilized, while adults just get handed a prescription for insulin and syringes and maybe an appointment with a CDE. I think it’s also the reason a lot of adults don’t know about checking for ketones, sick days rules, and so on…they just aren’t given a binder of information like those of us diagnosed as kids.
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We could all collaborate on creating a clear and concise guide to living with T1D and then share it with the world as a simple website and a simple printable PDF.
Or maybe one already exists and we can help get it into the hands of more new T1Ds?
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@ned I think this is a great idea. I also think the key would be getting it into the hands of the doctors or CDEs that many people deal with. If you’re on a forum like FUDiabetes you’re likely already much more clued in to your options than someone who is diagnosed in their internist’s office and doesn’t seek out online information/communities.
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I was in hospital and most of the in-house training was a blur, other than how to do pen injections, fingersticks, and respond to hypos. Never heard of R until I found the online community!
I really personally disagree with anyone screaming get r and n! at least for long term situations. Forgot your insulin on a trip and no other options in the world and you know how to use it and talked to your doctor in case of emergencies? Sure . Uninsured for like a week and run out of insulin? Sure. But not for long term like this guy probably could of ended up being. NPH and R are so rigid and hard to use compared to analogs. It’s super dangerous to advise people who have only used analogs to the older insulin when their doctor has not advised them on how to , and they can’t get a doctor appointment due to no insurance. Patient assistance programs, medicaid applications, marketplace applications, and trying to find ways to get it out of pocket like admelog and basaglar which are cheaper and admelog has a $99 a vial and $150 a box of pens (5 pens) discount coupon. All should be exhausted first before someone long term uses N and R (maybe only using it in the meantime) . I lost my insurance for 6 months and survived on a large humalog and lantus stock pile, extras from friends, and samples from my doctor who was very understanding. NPH is too difficult for me to use with my active lifestyle. I can’t go low , even though I only work part time, I can’t go low at my job, I’d put my entire job on the line. I don’t have lows with basaglar/lantus and humalog/admelog. They just work easier. I’m not alone on that I’m sure. Sure, you’ll live, but at a major cost: your complication risk is higher, your a1c will likely suffer, and people with hypoglycemia unawareness should really avoid nph like the plague as well…especially since they can’t afford a CGM .
NPH and R also tell the insurance companies that we want these insulins , instead of the better analogs, and they are encouraged to stop covering analogs. Starting to see more people who can’t easily get an analog on their insurance that they pay for every month, not even medicaid (though those are starting to prefer non-analogs too) . It’s a really dangerous side effect, it’s telling them we want cheap older insulin instead of the better stuff.
Sorry for the essay btw, but people screaming about N and R really worries me.
And yet people did it for decades…
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They had specific instruction, as others have brought up here…they don’t teach new diabetics how to use NPH and R. I was never taught it and could not get to learning how to use it without visiting my CDE…impossible with no insurance.
Also more complications, more lows and highs, more unpredictability, more problems than most people do with analogs unless they were super lucky and mastered it. Harder to do for an uninsured stressed person who is trying to make ends meet and may work somewhere that doesn’t allow the inflexibility of NPH and R.
Hence…
I never really received specific instruction on how to manage with analogs either, aside from about a 10 minute session on how to wash my hands and dispose of sharps properly. We’re all pretty much self taught in this condition. That’s why I’d like to be well versed in backup plans before they’re necessities instead of after.
Btw I use R frequently now… I really don’t find it that much different from novolog/ humalog, in a lot of cases I think it works better
Everyone’s needs, capabilities and experiences differ, which is what collectively makes us better as a group. My experiences with R & NPH were not those of most D-peeps. Would I use it everyday? Only if that was the last option. R& NPH require way too much structure for my everyday life unless I want my life to be about R & NPH. If I happen to be in similar circumstances as last time, I will run to Walmart to buy R&NPH and be thankful that I can even afford that.
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Despite the naysayers’ views of R, my endo seems to think that R would be a much better option for me than the faster acting Novolog, Humalog, and Admelog, not because they act much faster, but because they are gone from my system much faster that the longer lasting characteristics of R.
So much so that I’ve been advised to work through my existing supply of the faster acting insulins, and then my prescription will be changed to R for normal, routine use.
Other than the longer pre-bolus period, and the longer, flatter IOB curve, I have used R without any real problems when I was experimenting with my “what if” scenario solutions. I’ve not yet done any testing/experimenting with N, but I would definitely want to have some sort of solid concept of just how that might need to be dosed as a replacement for Lantus/Basaglar, in the unfortunate event that those treatment options were to become unavailable to me, for whatever reason.
Everyone is different, but the one thing that does remain constant, is that, when all is said and done, we are all ultimately the only ones who are responsible for determining what needs to be done to watch out for ourselves and our diabetes.
Do diabetes patients desperately need advocacy?
I doubt anyone here would disagree with that.
But until things change from the way they are at present, all options should be on the table, until there is a solid medical reason why they shouldn’t be.
Convenience, while a valid concern, if only a small part of what must be addressed.
Nothing is convenient enough if you can’t afford it to start with.
And the slow death that comes from untreated diabetes is decidedly inconvenient, or, it certainly seemed to be so to me, as I watched my father succumb to just that same fate.
Like others, when I see these types of stories, the first thing I think of is how long the person could have effectively managed their condition with the affordable OTC insulin options that do exist. Part of the problem, it seems to me, is that we are all ‘brainwashed’ by the health care community at large, who only want to tell us about the high priced, (and VERY profitable) bells and whistle treatment options on the market.
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My training on R & NPH came from Google and other D-blogs. I was forced onto it due to finances. You can figure it with just a little online research, assuming you are motivated to do so.
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Some of us have discussed it elsewhere; R is doable, just requires pre-bolusing more and works better eating lower carb. It’s NPH that’s the disaster for many, and while many of us used it for a long time, plenty of us also ran much higher A1cs to account for its unpredictability and tendency to drive lows, especially overnight. Sure, I’d use NPH if my options were that or no insulin (and I did), but I would fight tooth and nail before having to go back on it, and my control would almost assuredly suffer for it. And of course, it may work ok for some folks—but I know my experience with it is fairly common.
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Fifty years ago no one told me how to use R and Lente insulin. I was concerned enough to sit down and draw graphs so I would know what to expect.
Most people with diabetes are not so stupid that they wouldn’t be able to figure it out. It’s not rocket science. Help is available.
It’s amazing to me that it is not common knowledge that R and NPH insulin is available for a reasonable cost.
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