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Epipens -- unbelievable


OnMyOwn
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I just went to fill my son's epipen prescription. The pharmacist called to warn me it was going to be $1200! Last year, it was $400.

 

I had heard about how Mylan has been increasing the price and the backlash they were getting over it. Ii had read that they had increased their epipen coupon from $100 to $300 and that they had an assistance program so that families with income under $100,000 wouldn't have to pay anything. I had also heard that they had released a generic.

 

Well, there is a new coupon for $300 off, but they have tripled the price, so even with this new coupon, it will cost me double what I paif last year -- $800. The generic (distributed by Mylan) costs $881. The plan to cover families who make under $100,000 only offers coverage if you don't have insurance.

 

If anyone finds any other options, please let me know because we won't be paying these prices. I've been carrying these epipens around for almost 17 years now and we've never even used one. I've got to find another alternative.

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Adrenaclick is what I use. Download the GoodRx app and search for it locally, with use of the coupon with the app it tends to be more in the $200 range.

 

This works if your doctor has specified autoinjector epinephrine. If they specify Epipen then you need to call them and ask them to rewrite the prescription for the generic/unspecified brand.

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I truly wonder how the board or shareholders of Mylan sleep at night. I would worry that there was a specific circle of hell just for Pharma executives. So glad I am no longer in that field.

 

I am so sorry. Hope you find an affordable, effective solution solution that doesn't put one dime in those money grubbing $&@?!&'s pockets.

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Adrenaclick is what I use. Download the GoodRx app and search for it locally, with use of the coupon with the app it tends to be more in the $200 range.

This works if your doctor has specified autoinjector epinephrine. If they specify Epipen then you need to call them and ask them to rewrite the prescription for the generic/unspecified brand.

 

 

Thanks. I'm going to check this out.

 

 

Did you check with more than one pharmacy?  While the whole controversy regarding the prices of the EpiPens is very real, and I absolutely don't support Mylan's raising prices, etc....ultimately the actual end price is in part due to the pharmacy that you get it at.  It might not make THAT much of a difference, but you might find different prices if you check around at CVS/Walmart/Walgreens/Rite Aid/Kroger etc. 

 

But beyond that, I agree with Arctic Mama's post about asking the doc to write the script specifically for the competitor.

 

I will check, but this pharmacy has always been reasonable with all of our other prescriptions. I will check at Walmart, but even if they are $200 cheaper, we're still looking at paying $800. And that's just for one set. We're supposed to have two.

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I have to go pick one up from the pharmacy tomorrow. The allergist also gave us one of the $0 copay coupons, but I haven't looked closely at it.

 

Y'all are scaring me with these prices. I'm going to be standing there at the counter peeking out from behind my hands when they show me what my share is.

 

Ironically, my neighbor is a biochemist who makes epipens.

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Our allergist refuses to prescribe any epinephrine other than Epipen.  She says all the other options are too confusing or hard or dangerous.   :willy_nilly:   What is really dangerous is people with severe allergies not having any epinephrine on hand because they can't afford the Epipens.

 

Wendy

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My Dr gives us a $0 coupon. I used to print it from their site. Ask the Dr about a better coupon

 

 

I have a good coupon. The problem is our health insurance also stinks since the changes in the health care law. We now have at least a $6000 deductible before they pay anything and that includes prescriptions. So, we don't get to where we're just responsible for the copay until we've paid $6000 out of pocket.

 

 

I have to go pick one up from the pharmacy tomorrow. The allergist also gave us one of the $0 copay coupons, but I haven't looked closely at it.

Y'all are scaring me with these prices. I'm going to be standing there at the counter peeking out from behind my hands when they show me what my share is.

Ironically, my neighbor is a biochemist who makes epipens.

You'll probably be okay unless you have a high deductible plan that also includes all prescriptions in the deductible.

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Our allergist refuses to prescribe any epinephrine other than Epipen. She says all the other options are too confusing or hard or dangerous. :willy_nilly: What is really dangerous is people with severe allergies not having any epinephrine on hand because they can't afford the Epipens.

 

Wendy

That's ridiculous and I hope my ds's allergist doesn't tell me that.

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I had my doc prescribe an 1mg ampule of Epi and bought a box of syringes. Grand cost - 4 vials of Epi - 11.04 and 100 syringes 24.00. OH and I bought a toothbrush holder for .97 to hold the syringe. :laugh:

That is very tempting. The problem is that I'm dealing with a teen and I can't see that working out at this point. I could see using that for a replacement for the epipens I usually keep in my purse, though.

 

ETA: You know, I may ask about this after all. My ds was so good about carrying his avi-q injector because it was small enough to fit into his pocket. He's never going to carry these huge epipens around with him, but a small vial of epinephrin could be put in a case in his pocket.

Edited by OnMyOwn
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The problem is dosing it in an emergency. An overdose can easily be damaging or fatal, and drawing it up properly by a sufferer during anaphylaxis is difficult, and by a bystander is worse. My doctors up here refuse to do it even though I know how to give myself injections because of that.

 

I can see it being allowed with a child by their primary caregiver, but it's not reliably safe and accurate for someone who doesn't have a medical guardian around of some sort or another. I wish they did allow it but even in an emergency situation they wouldn't prescribe me a vial because it is a life intervention drug to be used on myself and needs to be dosed by someone competent, which I could not provide would be available to me at a given time.

 

I really wish it was practical for self administration, because we have no prescription coverage!

Edited by Arctic Mama
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My friend who actually has to use an epipen almost yearly for her child, wrote a FB post about that. That she would never, ever be comfortable using a vial and syringe, because it's completely impractical in an emergency situation, and that there is NO way her child would be able to administer it himself. 

I had a friend who got the generic (no insurance) for like $200-300 but I can't find the post anymore. :(

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What I find particularly disgraceful and unethical about the epipen thing is that the mother of the Mylan CEO used her position as head of the National Association of State Boards of Education to push to mandate epipens in schools. That is such a conflict of interest that it should not be legal.

 

I hope all who need can find a cheaper generic solution.

Edited by regentrude
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My friend who actually has to use an epipen almost yearly for her child, wrote a FB post about that. That she would never, ever be comfortable using a vial and syringe, because it's completely impractical in an emergency situation, and that there is NO way her child would be able to administer it himself.

 

I had a friend who got the generic (no insurance) for like $200-300 but I can't find the post anymore. :(

I have friends who have to use them weekly.

For occasional medical emergency use, I think a parent would have difficulty using a syringe.

 

However, for families with medical training, who are used to emergencies, it would be doable. (this I say as a mom to a now deceased medically fragile child- parents can & do learn to do emergency medical procedures on their children at home in life & death situations on a frequent basis- emergencies involving trachs, vents, seizures, anaphylaxis... ICU level care, parents "can" do it)

 

Teachers, bystanders, kids, parents who only use an epi pen occasionally, no.

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The whole epi-pen deal (and similar meds being raised merely for profits for stockholders/CEOs) makes me  :cursing: .

 

One thing to consider.  That trip to Canada just might be cheaper than buying them domestically and can make for a nice field trip while homeschooling.  That way at least you get some benefits of the higher cost rather than the corporations and people running them.  Once per year (or as needed) you could head to Niagara Falls, Toronto, Montreal, Halifax, Ottawa, Vancouver, etc, etc, etc.  If you took a long trip, you'd probably spend more, but if you go during the week off season, sometimes you can find great deals.

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FWIW, giving injections is really simple. I gave them to my horse *all the time* when I was a young teen. Sub-cutaneous as well as intramuscular. Both are really easy. *really* easy. 

 

FTR, I think Mylan has done a very scuzzy thing, and I hate drug companies. 

 

Yep, I've given intermuscular shots and they really aren't that hard.  I would even be amenable to the allergist requiring me to attend (and pay for) a training seminar at their office before they would prescribe ampules of epinephrine.  Or they could offer pre-filled syringes - they don't keep as long as Epipens, but having to go in and get a new syringe every few months would be a small inconvenience (and a very small cost) if it meant not having to pay for Epipens.

 

Our allergist won't even prescribe Adrenaclick because the needle doesn't retract after use.  REALLY?!?!  I manage to care for a child with life threatening allergies on a daily basis and I'm responsible for recognizing and treating his anaphylactic reactions, but I can't be trusted to properly dispose of a needle?

 

Wendy

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I have friends who have to use them weekly.

For occasional medical emergency use, I think a parent would have difficulty using a syringe.

 

However, for families with medical training, who are used to emergencies, it would be doable. (this I say as a mom to a now deceased medically fragile child- parents can & do learn to do emergency medical procedures on their children at home in life & death situations on a frequent basis- emergencies involving trachs, vents, seizures, anaphylaxis... ICU level care, parents "can" do it)

 

Teachers, bystanders, kids, parents who only use an epi pen occasionally, no.

 

They have to use an epipen weekly? Wow, that stinks. :( 

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I would like to share my friend's post. She has more experience with severe food allergies than anyone I have met, and she made it public I believe so it would be shared. I think people who just think, "Injections are easy" are kind of oversimplifying things. If someone already has experienced giving their rapidly-dying child/self a life-saving medication by syringe injection, then obviously they know they can...but no one I've talked to yet who brought up this solution has actual experience with it.

https://www.facebook.com/dorin.jordan/posts/10154504465419700

 

Obviously there are people who are 100% confident in their abilities, but from my perspective, it helped me to see why this was not a helpful suggestion to make to  parents of allergic kids. 

 

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And what did people do before Epipens? I'm in the camp that parents can learn to do medical procedures if they have to. I had to learn to draw up valium in a syringe and administer it rectally through a feeding tube for my dd to stop life-threatening seizures. Then Diastat came out, and while I got those for the school to use, I continued to draw up valium myself for many years because it was about 1/10 the cost of a Diastat (that's with insurance). I also had to learn how to administer ACTH injections intramuscularly for this same dd. If they make Epipens prohibitively expensive, the medical establishment will need to prepare parents to be able to administer life-saving shots as an alternative to parents not having an epipen because they can't afford it.

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And what did people do before Epipens? I'm in the camp that parents can learn to do medical procedures if they have to. I had to learn to draw up valium in a syringe and administer it rectally through a feeding tube for my dd to stop life-threatening seizures. Then Diastat came out, and while I got those for the school to use, I continued to draw up valium myself for many years because it was about 1/10 the cost of a Diastat (that's with insurance). I also had to learn how to administer ACTH injections intramuscularly for this same dd. If they make Epipens prohibitively expensive, the medical establishment will need to prepare parents to be able to administer life-saving shots as an alternative to parents not having an epipen because they can't afford it.

 

I agree! As a parent of a diabetic child, I know you can learn anything to help your child. If someone had asked me two years ago if I could stick a needle in my child, I would have looked at them like they were nuts. There is something about your child being in a crisis that erases all doubt and fear about jabbing a needle deep into their thigh!

 

We have to buy Glucagon kits in case of a severe low. They cost a little over $300 each. We have to put saline into a vial with powdered solution, mix it up, then draw a certain amount into the syringe and jab the needle into the muscle of her thigh. We have to do this while our child is unconscious/unresponsive and while we are very likely panicking. I think parents of kids with allergies are not being given enough credit by saying they need a pen that does it all for them. I can understand having a pen on hand for someone other than a parent who may not have been trained, but parents are very capable when they know their child's life is on the line.

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Our allergist refuses to prescribe any epinephrine other than Epipen.  She says all the other options are too confusing or hard or dangerous.   :willy_nilly:   What is really dangerous is people with severe allergies not having any epinephrine on hand because they can't afford the Epipens.

 

Wendy

 

 

I would find a new one or ask your family doctor.   What do they think we did before Epipen?  Pulled it out of vial and injected ourselves.   I preload one syringe (or 3 in this case as the vial holds three doses) but still......... that's a CYA response. 

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 Before Epipen, doctors routinely taught parents and children to draw up epi and inject themselves.   I was 7 and had to inject myself.  At the age of 9, a kid on the playground did it for me.  It most certainly can be and was routinely done before EpiPEn.  Again, most people would preload a syringe and then carry that around for roughly 6 months before it goes bad. 

 

Doctors used to train their patients to care for themselves.  Every visit to every doctor, they had me and my mom show them how to draw up epi and inject it.   When i was little, they would act out scenarios as if I was having a reaction to better prepare me for the possibility.   I can remember drawing up a vial and the nurse shaking my arms from behind to simulate a reaction.   Kids can do it unless unconscious.  

 

My mom made sure every adult I was with knew how as well.  

 

 

 

 

 

 

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Before Epipen, doctors routinely taught parents and children to draw up epi and inject themselves. I was 7 and had to inject myself. At the age of 9, a kid on the playground did it for me. It most certainly can be and was routinely done before EpiPEn. Again, most people would preload a syringe and then carry that around for roughly 6 months before it goes bad.

 

Doctors used to train their patients to care for themselves. Every visit to every doctor, they had me and my mom show them how to draw up epi and inject it. When i was little, they would act out scenarios as if I was having a reaction to better prepare me for the possibility. I can remember drawing up a vial and the nurse shaking my arms from behind to simulate a reaction. Kids can do it unless unconscious.

 

My mom made sure every adult I was with knew how as well.

Due to liability, prevalence of allergies, or individuals being outside of medical assistance (like an adult sufferer living alone or without an aid) that practice has pretty much fallen out of favor. Reactions can happen extremely quickly, and with the blood pressure drop and lack of oxygen coordination to make it over to a purse, let alone have a stranger draw up a correct dose, isn't reliable.

 

Preloading syringes does help and is a viable solution, but I have had to travel with them and haven't found them any more compact than a two pack of autoinjectors, and less convenient. It's more cost effective but so is buying internationally from an approved, inspected pharmacy (NABP can help you locate one) or using another brand of autoinjector epinephrine.

 

I do think parents at home with their kids should have the option of drawing up a syringe and maybe just saving the autoinjector for when you're out and about, as that would give some cost effective alternatives, but there is a reason things like naloxone and epinephrine have autoinjector formats by and large these days - the administration of these immediate reaction life saving drugs is often done by strangers or untrained personnel on someone who cannot give instruction themselves, and therefore the delivery has to be reliable.

 

The fatality rate among diagnosed anaphylactic allergy sufferers used to be higher than it is now. While some of that may be due to the wider presence of epinephrine and public awareness, a fair bit of the mortality change happened when administration of intramuscular adrenaline became more reliable.

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I would gladly pay the price of the Epipen today if I could have the AuviQ back. 

 

I have seen my child turn blue, it isn't a great feeling even when there are 2 nurses right there! I have done IVF 2 times and did 3 frozen cycles. Drawing injections isn't a problem for me. I would even be able to administer it to my child no problem, provided they were not dying or struggling to live at that moment! 

 

I wanted the Auvi Q because I wanted it to be idiot proof for me. In crisis situations normally it doesn't hit me till after the fact. However past performance is no guarantee of future results and idiot proof is where I would like to be. 

 

I think my son will need one more epipen and then he will not be in danger anymore and need it. He has almost outgrown his food allergies. However I am in a different camp. Yet another reason for me to want an Auvi-Q. That way even my older son could administer it if need be. 

 

I get that they are only doing what the market will bear, but it seems greedy and they really should just look at it the other way. If they were to make it cheaper, they could sell more of them and make it up that way. Same pie, just a different way to cut it. (Sell 100 at $300 profit, make $30,000 profit. Sell 1,000 at $30 profit, make $30,000 profit.) They could market it as a life saving device that all children need. How many of us would gladly get a $20 script for something our child may or may not need one day? That is my point. 

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The fatality rate among diagnosed anaphylactic allergy sufferers used to be higher than it is now. While some of that may be due to the wider presence of epinephrine and public awareness, a fair bit of the mortality change happened when administration of intramuscular adrenaline became more reliable.

 

I'm sure that is true, but life is full of hard, crappy, unfair decisions and in general I think people should be free to opt for an imperfect choice for themselves and their families if they judge it to be the lesser of all evils.

 

If the choice comes down to spending a grand on Epipens that may very well never even get used for one child or spending that money on a neuropsych evaluation for another child whose mental illness impairs their day to day function, I think parents should have the right to sign a waiver and choose the ampule of epi even knowing about the increased risk.

 

Wendy

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Wendy, I use them myself and have no prescription coverage, I understand the issue and it makes me furious. We have been specifically asking for the allergist to only specify the dose and medication type so we can work with our pharmacist to find the most cost effective option. I use Adrenaclick I believe I paid about $140 for mine at Walgreens the last time, with the GoodRx coupon. I was one of those begging an urgent care doctor to send me with a syringe and epinephrine because we could not swing that emergency $500 appointment while I was on a work trip AND till the prescription. He ended up taping a preloaded syringe for me so it wouldn't lose pressure and I wouldn't react again on the plane in a few hours and die, but it took a lot of begging to get them to do even that.

 

I'm totally not opposed to epinephrine vials and syringes in the right circumstances, but if the child is in a group setting or away from home, or like me as an adult with nobody to help, it is a poor choice and pretty much considered against best practices for allergists to allow at this point. When you're fighting best practices, especially in something so high liability, it is extremely difficult to get a provider to justify because it's on their heads if something goes wrong (as far as their insurance is concerned).

 

And really, I don't mind paying the adrenaclick cost with coupon and shoppping around for the cheapest pharmacy. I refuse to buy Epipen brand and refused Auvi-Q as well when it was available, because they were both hellishly expensive. I was forced into buying an Epipen one time because it was 10 at night and the doctor had gone home right after I left, but I didn't realize until I got to the pharmacy that he specified the brand. Grrr.

 

I totally agree with the sentiment in theory and always look for health cost savings (we are fighting massive medical debt right now :( ) but as I said with Naloxone, Epinephrine, and other similar types of drugs the autoinjectors are definitely more foolproof for a bystander or self administration in the moment. And given that an overdose of epinephrine could be fatal and underdosing could cause a rebound reaction the move away from that in this country makes sense. If people couldn't sue their doctors for their own failures in medication dosing it would be a different ball of wax.

 

Unfortunately the state of things means we all get to go broke :(

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Wendy, I use them myself and have no prescription coverage, I understand the issue and it makes me furious. We have been specifically asking for the allergist to only specify the dose and medication type so we can work with our pharmacist to find the most cost effective option. I use Adrenaclick I believe I paid about $140 for mine at Walgreens the last time, with the GoodRx coupon. I was one of those begging an urgent care doctor to send me with a syringe and epinephrine because we could not swing that emergency $500 appointment while I was on a work trip AND till the prescription. He ended up taping a preloaded syringe for me so it wouldn't lose pressure and I wouldn't react again on the plane in a few hours and die, but it took a lot of begging to get them to do even that.

 

I'm totally not opposed to epinephrine vials and syringes in the right circumstances, but if the child is in a group setting or away from home, or like me as an adult with nobody to help, it is a poor choice and pretty much considered against best practices for allergists to allow at this point. When you're fighting best practices, especially in something so high liability, it is extremely difficult to get a provider to justify because it's on their heads if something goes wrong (as far as their insurance is concerned).

 

And really, I don't mind paying the adrenaclick cost with coupon and shoppping around for the cheapest pharmacy. I refuse to buy Epipen brand and refused Auvi-Q as well when it was available, because they were both hellishly expensive. I was forced into buying an Epipen one time because it was 10 at night and the doctor had gone home right after I left, but I didn't realize until I got to the pharmacy that he specified the brand. Grrr.

 

I totally agree with the sentiment in theory and always look for health cost savings (we are fighting massive medical debt right now :( ) but as I said with Naloxone, Epinephrine, and other similar types of drugs the autoinjectors are definitely more foolproof for a bystander or self administration in the moment. And given that an overdose of epinephrine could be fatal and underdosing could cause a rebound reaction the move away from that in this country makes sense. If people couldn't sue their doctors for their own failures in medication dosing it would be a different ball of wax.

 

Unfortunately the state of things means we all get to go broke :(

 

Unfortunately our allergist refuses to prescribe Adrenaclick (or anything but Epipen) because it is "too dangerous" since the needle doesn't retract after use.  I tried to explain that as homeschoolers we did not have to worry about anyone inexperienced needing to use and dispose of the injector (DS is always in the care of myself, DH or my parents), but the allergist just called it a nonnegotiable office policy and blew me off.  This is the only allergist office in the vicinity that accepts our insurance so they pretty much have a monopoly and can make whatever stupid rules they want.

 

I certainly don't think an ampule and syringe or pre-loaded syringes are the answer for all situations, but I think they can be a viable choice in some situations and can be a life saving alternative in cases where families simply cannot afford Epipens and therefore do without or use them long after they have expired.

 

Wendy

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That's so stupid, given that those administering subcutaneous insulin just have a syringe and cap - the adrenaclick has a casing that functions the same way as any other sharp. Can you transfer your records to a GP or ANP and explain that you are under specialist care but need his particular prescription written a certain way? There is nothing to prevent them from doing it with a diagnosis in place.

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Yes, why not order from Canada? I would, unless something prevents it.

I started looking into this, but apparently many of the internet "Canadian" pharmacies are not legit and you may be taking a risk that the medication you think you are ordering is really not that at all.

 

http://www.consumerreports.org/drugs/dont-order-epipens-from-canada/

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The cheapest price I can find for the adrenaclick is $340 at Walmart with a coupon. So, better than the epipen, but still getting pretty expensive.

My GoodRX app currently has Adrenaclick 2-pack genetic auto injectors available for $192.98 here locally in Alaska. The prices are higher at the other pharmacies but the app lets you shop around and find the cheapest. Did you download it and check or are you using another means?

Edited by Arctic Mama
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My GoodRX app currently has Adrenaclick 2-pack genetic auto injectors available for $192.98 here locally in Alaska. The prices are higher at the other pharmacies but the app lets you shop around and find the cheapest. Did you download it and check or are you using another means?

I just checked again and it now is the price you say at Walgreens with the goodrx coupon. Interesting because when I checked yesterday the $350 at Walmart with the coupon was the cheapest one that popped up for me. Thanks! I'm going to stop by the doctors office on Monday and try to get these prescribed.

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And FWIW, this is an issue with other lesser-known, auto-injectors that usually don't have any insurance coverage at all. 

 

We're aware of one that is $4,000 with virtually no insurance coverage. The doctors have to prescribe it because of protocols in certain situations, but no one gets them. We know someone who died because they didn't fill the prescription and couldn't get to an ER in time, but thankfully it's an extremely rare situation.

Edited by G5052
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