There's an EpiPen shortage. Parents of kids with serious allergies prepare for back-to-school without the life saving medication

Originally published at: https://boingboing.net/2018/08/16/theres-an-epipen-shortage-p.html

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It was officially listed as a “shortage” back in may.

And the FDA finally approved a generic today:

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And for those who can’t afford the price tag, there’s always the 30$ epipencil.
(Is it 30$ to make? I can’t remember right now…)

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Auvi q to the rescue. We’ve gotten it free for the last two years for my son. Get their coupon and have your doctor fill out the paper work. Mylan can suck my pickle.

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Auvi Q is apparently $4,500 to your insurance if its covered. Which is well more expensive than Epipen even at their crazy ass prices. Its free if your insurance doesn’t cover it, or you make less than $100,000 a year. Unless you’re on medicaid or medicare or other government insurance. Its very odd. Apparently You pay $360 bucks if you fall into any of the gaps. There’s Adrenaclick. Which is ~$300 bucks for a 2 pack. Unless you go to CVS and then its ~100 And Mylan sells a generic of its own for ~$300 bucks.

All of them seem to be sticking with the original “that’s ridiculous” price point from Epipen of $300 bucks. Only sold in 2 packs. And expiring every six months. And given what Auvi-Q charges insurance companies, none of them are really lowering the price of the drug. Just shifting the cost around to market themselves as helping.

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We didn’t submit anything to insurance. It was completely free. And we make more than 100k so not sure how it all works out. I believe it’s because they are trying to get customers from the fallout of the EpiPen. I’m sure we’ll have to pay next year but it was nice having a couple years off from paying 500 bucks or so.

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A DIY Epinephrine Autoinjector for just over $30

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Something something “invisible hand of the free market”…

It’s just capitalism at work! If you can’t afford a set of epi-pens to save your kid’s life, then you should have worked harder! /s

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The invisible hand gave us all the finger.

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I thought I remembered something about that.

Also:

And then there’s the question of just how worried we should be about expiration dates in the first place.

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From what I understand the 6 month expiration date that’s listed (if its still listed as 6 months bad PR might have gotten to them), isn’t all that strict. An an auto-injector can be usable up to 4 years beyond the expiry. But epinephrine does degrade quicker than a lot of other prescription drugs. Its effected far more by storage. So you shouldn’t expect them to be effective beyond about a year.

I’m supposed to have an epipen around. In case of bees. But the quick expiration is the major reason I’ve never bothered. Its just not a practical thing to regularly pay. For something that’s impractical to keep stored on hand. Just in case of bees. Specifically 3 or more bees. Three or more bees is what I’m supposed to be on the look out for.

I think I was stung once. By a lame as bee that couldn’t even get its shit together to make me swell up violently. Since I was told that more than 10 years ago. I would have thrown out thousands of dollars in epipens. No insurance for much of that time.

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you can buy Epipen as single pens for £45 (~$55) over the counter in the UK so you guys are really being taken to the cleaners.

With the exchange rate, you could order online and get it sent to the US for cheaper than buying locally.

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And that’s really the bullshit. 2 packs used to be $50 bucks I think? And you could get a single for like $30 or something (been a while). They won’t make it over the counter, so you’ve got to pay for a doctors visit/copay for that. Most of the generics. Including the one re-approved today used to be approved and available a. And would have been cheaper than the going rate at whatever point.

If that was still the case, if “the market” had done its job. I wouldn’t see a problem with tossing $20 or so at an epipen for my car, or the house or whatever. Every year or so. Just to avoid getting My Girled. But pretty much since my healthcare was on my own dime, its been insane. I still remember talking with my mom. “oh you should pick up a couple epipens, so and so will call in a script for you. Its like fifty bucks”. When we called so and so we learned they were not fifty bucks. Then we googled it. And learned they were really, really, really not 50 bucks. And they’ve only gotten less 50 bucks since that point.

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That sucks.

We pay about 30 euros per Epipen (without government subsidy). Even that stings when you buy one for home, schoolbag, school, both grandparents house every year.

What I don’t understand is the shortage. Even in Europe there’s a periodic shortage. I don’t get why Mylan rocks the boat with this seemingly incompetent behavior? It’s not like Epipen is a new drug and they have problems manufacturing it or that a factory burned down. Why would they draw more attention to this golden goose when they are already under fire for price gouging? Strange.

The good news is that few years old Epipens are still most likely good:

https://edition.cnn.com/2017/05/08/health/expired-epipen-safety-study/index.html

http://annals.org/aim/article-abstract/2625390/epinephrine-concentrations-epipens-after-expiration-date

Results: We collected and analyzed 31 expired EpiPens
(epinephrine, 1 mg/mL) and 9 EpiPen Jrs (epinephrine, 0.5
mg/mL) (Table). None was discolored. All were 1 to 50
months past their expiration dates. Nineteen of the EpiPens
(65%) and 5 of the EpiPen Jrs (56%) contained at least 90% of
their stated amount of epinephrine.

(You can get the full paper on Sci-hub.tw)

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Every day, in every way, I feel less and less like risking my life on a visit to America. I’m worried it might truly become a “once in a life time experience”.

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Except that the EpiPen shortage is worldwide, and UK and Canada are further down the shortage slope.
https://uk.reuters.com/article/us-mylan-nl-pfizer-epipen/epipen-shortages-seen-in-canada-uk-but-u-s-supply-intact-idUKKBN1HK2YG
A single maker with a single production plant. And ooops…

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yeah, we got that deal from Auvi Q, as well… we were led to believe just the first one was free (tell your friends)…?

Either way, my daughter’s allergies are not horrible and (knock on wood) we’ve never come close to needing to use her Epipen (or Auvi Q)… I wonder if doctors are too quick to prescribe, perhaps not wanting to be responsible if a child DOES have an incident…? I almost feel like my daughter doesn’t really need to have one - at least not one at school AND at home - she’s in high school now, she can just carry one around. I feel like it would be better served being someone else’s epipen.

And, of course, we just noticed the one we were going to send to the school has expired.

Through the magic of the free market we pay ten times as much as other countries for an old drug, the drugmaker can’t be bothered to ensure adequate supply for a regular demand spike, the existing supply is doled out in an entirely arbitrary way to people who maybe could have a bad reaction or people who 100% will die in minutes if they get an exposure to their allergen, we are probably replacing the things a lot quicker than necessary because nobody knows how long they last, but hey that one executive went to jail for maybe tricking some other rich people out of some money and not at all for any of this.

Time for some more tax cuts for the rich, right?

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Don’t worry bro: Most of the bees will be dead by the end of the next decade.

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Allergology was not my strong suit, but as I understand it the problem is that we don’t know how to predict what the next allergic reaction is going to be. For example with peanut allergy, if the first reaction is severe we don’t know what the next reaction is going to be. Might be nothing and might be suffocating to death. And then the next one might be different again.

On the other hand we know some allergies tend to get better (milk and egg for example) with age and some usually don’t (like peanut allergy). And now there are desensitization treatments for some allergies, but they come with some heavy caveats.

Not knowing the specifics, maybe you should talk to a allergist and ask them those questions? Try to find one that has published on the specific allergy.

Keep a second Epipen (at least an expired one) as backup, especially if you live in an rural area. If a severe reaction occurs, one might not be enough or the first might be wasted in an extreme situation.

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