So that was overwhelming...UPDATE

[lexi]

My family was interviewed by CBS news about the rising cost of Epi pens. We feel so honored to share our story and raise awareness for food allergies and the rising cost of Epi pens. We currently pay more for Epi pens than we do for car insurance on two cars!

Here's the link to the news story. I'm hopeful there will be positive changes in the future (and cheaper options)!

http://www.cbsnews.com/news/allergy-medication-epipen-epinephrine-rising-costs-impact-on-families/

But having a news crew descend on my house for four hours was so overwhelming! They wanted to interview my 3-year-old! Ah! Thankfully she cooperated. But wow was I nervous about the whole thing!

 

And they showed a second story on the evening news with different footage! I did not know they were airing the story again. But yay for helping to raise awareness!

 

http://www.cbsnews.com/videos/rising-cost-of-life-saving-epipen-leaves-some-at-risk/

 

 

Edited August 17, 2016 by lexi

[bolt.]

That's terrible! (About the price of epi-pens, not the story. The story is good.)

[Soror]

You guys did great and made me all teary! Thanks for speaking out, hopefully this awareness brings some changes.

[FaithManor]

Thank you for doing this. We've been trying to raise awareness locally, without much success. DH is allergic to wasp/bees and our insurance refuses to pay for epi-pens.

 

This year he had our doc order a vial of epinephrine and some needles and syringes. It isn't ideal in such an emergency to have to draw it up ourselves and make sure we get the dose right. But, with two in college and the cost of one pen adding up to college texts - our local pharmacies are charging $400 + for one pen and $550.00 for a two pack - we went this route.

[Mergath]

Wow. I can't believe the company actually said they raised the price to better reflect the value the product provides.

 

In other words, they know some of us might die without epipens, so they'll charge us as much as they damn well want to.

 

:cursing:

[Scarlett]

My family was interviewed by CBS news about the rising cost of Epi pens. We feel so honored to share our story and raise awareness for food allergies and the rising cost of Epi pens. We currently pay more for Epi pens than we do for car insurance on two cars!

 

Here's the link to the news story. I'm hopeful there will be positive changes in the future (and cheaper options)!

 

http://www.cbsnews.com/news/allergy-medication-epipen-epinephrine-rising-costs-impact-on-families/

 

But having a news crew descend on my house for four hours was so overwhelming! They wanted to interview my 3-year-old! Ah! Thankfully she cooperated. But wow was I nervous about the whole thing!

I saw that story! Did the interviewer ask your dd, "do you know why it is so important to have your epi pen"? And your dd said, "you never know, what has someone eaten, did they wash their hands"?

 

Was that her?

[FaithManor]

Wow. I can't believe the company actually said they raised the price to better reflect the value the product provides.

 

In other words, they know some of us might die without epipens, so they'll charge us as much as they damn well want to.

 

:cursing:

This. They don't give a damn about human life.

 

Our acquaintances whose infant had infantile spasms due to DUP15Q condition found this out the hard way. The med required to stop his 200+ per day seizures cost $750,000.00. for one month. Yes, you read that right. The med was purchased in the 1950's from a German pharmaceutical company for $50,000.00. It costs less than $100.00 per dose to produce. There are about 6000 children per year that need it.

 

4.5 billion dollars.

 

The cost to produce when they bought it at $50,000 was back then, $2.50 a vial. They now charge over $23,000 per vial. 

 

And children will die with out it. Most insurance companies have a life time maximum benefit of 1,000,000. Once his spasms were stopped - about 30 days - he did not require more of this med, but we are talking about a DUP15Q kid here so a life time of needing medical care. He'll run out of insurance long before he's even four years old, and the taxpayer will take over which as a taxpayer I am happy to do, but this is how I feel....there is something rather immoral about our Big Pharma system.

[Carol in Cal.]

And the claim always is that it costs so much to develop and qualify drugs, which is true; but the bottom feeders that buy up old patents and then skyrocket the prices should be controlled.  That's just not right.  

[Mergath]

This. They don't give a damn about human life.

 

Our acquaintances whose infant had infantile spasms due to DUP15Q condition found this out the hard way. The med required to stop his 200+ per day seizures cost $750,000.00. for one month. Yes, you read that right. The med was purchased in the 1950's from a German pharmaceutical company for $50,000.00. It costs less than $100.00 per dose to produce. There are about 6000 children per year that need it.

 

4.5 billion dollars.

 

The cost to produce when they bought it at $50,000 was back then, $2.50 a vial. They now charge over $23,000 per vial.

 

And children will die with out it. Most insurance companies have a life time maximum benefit of 1,000,000. Once his spasms were stopped - about 30 days - he did not require more of this med, but we are talking about a DUP15Q kid here so a life time of needing medical care. He'll run out of insurance long before he's even four years old, and the taxpayer will take over which as a taxpayer I am happy to do, but this is how I feel....there is something rather immoral about our Big Pharma system.

Stories like this almost make me wish I believed in hell. Because these monsters should be held accountable for every baby that died for lack of this drug.

[FaithManor]

Stories like this almost make me wish I believed in hell. Because these monsters should be held accountable for every baby that died for lack of this drug.

I know. I know.

 

Friends are lucky. U of Michigan had some charities that contributed about $300,000 of it to help preserve some of his lifetime medical. God bless those charities. When they call us, I donate a little every time.

 

I bet you anything there are a lot of dead kids over this. I would imagine some of these $#&*^#$&^ insurance companies don't cover it at all, and a lot of hospitals won't have charities lined up that can manage a price tag like that, and the hospital simply couldn't absorb all that, and still stay open.

 

Our health care system is so broke it staggers the imagination.

[Garga]

Aha! I wondered what the heck was happening in the past few years. I know we used to get our Epipens for a lot less, and then last time I went to get one, the pharmacy said, "That'll be $765." I just about passed out.

 

It is the same story: new high deductible insurance. I thougth, "Huh. I guess it was always that much, but there wasn't an rx deductible or something." But no. It sounds like the actual costs have gone up.

 

I left the Epipen at the pharmacy that day. I didn't have $765 for it. Our two epipens (for dh and ds) are expired, but not by much. You can look at the medicine inside and it says not to use if it's cloudy. It's not cloudy yet, so we're just going to let the medicine get a little old. I mean, if I get both Epipens replaced, it's $1500. (Looks like some people pay only (only!) $600, so I'll have to shop around. So that when I replace both epi's is only $1200.).

 

I am sooo angry hearing that the cost did in fact used to be under $100 and now it's astronomical.

 

Oh, and that story about the meds costing $750,000.00. Floored. Furious. HOW do people sleep at night stealing from the families of sick babies?

[FaithManor]

 

 

Oh, and that story about the meds costing $750,000.00. Floored. Furious. HOW do people sleep at night stealing from the families of sick babies?

Have you ever watched Looney Tunes? These people are the Yosemite Sam's of the world.

[mommyoffive]

I had no idea.  Wow.

[Karen A]

Your family was awesome, Lexi!!! :-)

 

How did you get contacted to be on the news?

 

I need to fill two new Epi-pen Rxs next month.  We have new insurance and I have NO idea what it will cost.  

 

I met a family who carries this alternative to Epi-pens:

 

http://www.epinephrineautoinject.com/

 

No idea the cost of those, but something I'll check into to see what is less expensive--especially for the set that will not be at school.

 

 

[Guest]

I have to prop adrenaclick auto injectors. Way cheaper than epipen brand. It still is major ouch for us and I don't replace them unless the fluid had changed color as per my allergist's instructions, but with Goodrx we can usually find them at half the cost of the name brand.

[Miss Tick]

Sing it sister!

 

I remember picking up a prescription behind somebody whose medicine cost "One Sixty Three" and they were counting out change. I walked up and the guy said something like "Four Seventy Two", and I paused and asked (genuinely and hopefully) "dollars or hundreds of dollars?"

 

My son has never had a severe enough reaction to need to use it. That always adds some (guilty) layers to my thoughts about paying that much every 12-18 months.

 

Is it still cheaper in Canada?

Edited August 16, 2016 by SusanC

[BigMamaBird]

Oh my goodness!!!  I saw that segment on our local noon news and my first thought was "Six kids?  I wonder if they homeschool."  

[lexi]

I saw that story! Did the interviewer ask your dd, "do you know why it is so important to have your epi pen"? And your dd said, "you never know, what has someone eaten, did they wash their hands"?

 

Was that her?

Yes. That was one of my girls. I was so nervous when they put the cameras in her face to ask her questions.

[J-rap]

That is absolutely horrible!!  Things like this make me so darn mad.  

 

Great story though.  Thank you for raising awareness.

[luuknam]

This year he had our doc order a vial of epinephrine and some needles and syringes. It isn't ideal in such an emergency to have to draw it up ourselves and make sure we get the dose right.

 

Aren't you supposed to keep those refrigerated though? (I had one of those when we did allergy shots at home).

[happi duck]

You guys were great! Thanks for raising awareness!

[lexi]

Your family was awesome, Lexi!!! :-)

 

How did you get contacted to be on the news?

 

I need to fill two new Epi-pen Rxs next month. We have new insurance and I have NO idea what it will cost.

 

I met a family who carries this alternative to Epi-pens:

 

http://www.epinephrineautoinject.com/

 

No idea the cost of those, but something I'll check into to see what is less expensive--especially for the set that will not be at school.

Yes. I'm going to look at those. When I priced it they were only $100 cheaper than Epi pens when you used the coupon. So it wasn't a big savings.

 

I saw a post on a food allergy FB page that CBS was wanting to do a story about he price and wanted to talk to families. I contacted the blogger who had posted it and she gave me the contact info for CBS. I called to share our story. I had NO idea they would come to my house for a story. I was very unprepared for all of that. It came together very quickly. Whew! I just thought I was going to give them a few quotes to use. Did not know they would want to fil our family. So that was a very crazy four hours last Wednesday. And it meant so much cleaning up! Lol!

[sbgrace]

Lexi--that's so fantastic! Thank you for being a voice for so many of us!

 

 

Your family was awesome, Lexi!!! :-)

 

How did you get contacted to be on the news?

 

I need to fill two new Epi-pen Rxs next month.  We have new insurance and I have NO idea what it will cost.  

 

I met a family who carries this alternative to Epi-pens:

 

http://www.epinephrineautoinject.com/

 

No idea the cost of those, but something I'll check into to see what is less expensive--especially for the set that will not be at school.

 

I posted on another thread, but I did that in June of this year. If I used insurance, the cost savings wasn't significant ($400, compared to $600 for epi pens here/probably $500 with the coupon). However, if I didn't run it through insurance, the pharmacy had a coupon I could use which made the set $200. It wasn't cheap, but I was carrying past expired pens because we just couldn't do the epi cost.

 

I plan to keep doing those types unless things improve with epi pen prices.

Edited August 16, 2016 by sbgrace

[redsquirrel]

I've been seeing a lot on social media about the cost of epi pens.  It is just disgusting. It's not like they can justify the price beyond 'we know people need it'.  And having seen people need to use their epi pen it's not like it's an optional luxury. No one uses one for fun.

 

The thing is, some kind hearted legislator will create some legislation and maybe the cost will come down to the consumer...but not the actual cost. The insurance companies will force someone to eat the cost, maybe the gov't, so that means all of us. They don't care.

[Ali in OR]

This. They don't give a damn about human life.

 

Our acquaintances whose infant had infantile spasms due to DUP15Q condition found this out the hard way. The med required to stop his 200+ per day seizures cost $750,000.00. for one month. Yes, you read that right. The med was purchased in the 1950's from a German pharmaceutical company for $50,000.00. It costs less than $100.00 per dose to produce. There are about 6000 children per year that need it.

 

4.5 billion dollars.

 

The cost to produce when they bought it at $50,000 was back then, $2.50 a vial. They now charge over $23,000 per vial. 

 

And children will die with out it. Most insurance companies have a life time maximum benefit of 1,000,000. Once his spasms were stopped - about 30 days - he did not require more of this med, but we are talking about a DUP15Q kid here so a life time of needing medical care. He'll run out of insurance long before he's even four years old, and the taxpayer will take over which as a taxpayer I am happy to do, but this is how I feel....there is something rather immoral about our Big Pharma system.

 

My oldest dd had infantile spasms 4 times (last 2 at ages 8 and 9 despite the name). It is a horrible seizure pattern that is described as chaos in the brain. The treatment mentioned here and that worked for dd is called ACTH. 18 years ago when she first had it, I believe the cost was around $1,000 for the injectable meds. And the treatment is horrible. It's a very powerful steroid that made her so irritable, particularly when she was weaned off of it. ACTH was an "orphan drug" even then, and there was a program in place to get the limited supply to the people who needed it most. Now it sounds like they just jack up the price to ridiculous levels. I think it had gone up to about $12,000 the last time we needed it (insurance paid for us), and I remember hearing when it had gone up to $100k several years ago. My dad is a doctor, and he says they used to use ACTH "like water" (i.e. it was very cheap), so I don't think the price reflects the difficulty of making it. I don't know that dd's life was in danger due to the spasms, but perhaps even worse would be a life in a permanent seizure state of chaos in the brain.

 

I would absolutely use an epi-pen past the expiration date. Meds are just routinely dated at one year, regardless of how long the meds last (I would check with the doctor and do other research to determine how long I could expect to use it safely). For dd's diastats (rectal valium "pens" to stop seizures), we now get them for just a $10 copay, and I do make sure I have a new one for school every year. But I take any that I haven't used by that one year point and I will still use them at home. Before diastats were covered by insurance, dd's doctor used to prescribe injectable valium that I would draw up and then administer to her through a feeding tube inserted rectally (which is how they administered it before diastats were developed). One vial was about $10 but provided enough to stop many seizures. Not as easy or convenient as a Diastat, but probably saved us hundreds of dollars over the years we used that system.

[Hen]

Lexi,

 

I follow you on instagram, didn't realize you were a hive mom :)  

 

I hope this mess with the system gets changed.  I have 3 kids with asthma and 3 years ago, I went to the pharmacy to pick up an $8 inhaler and a $20 steriod inhaler, and they suddenly were costing something like $50 for the inhaler and $120 for the steriod.  I left them there, and gave my kid my used inhaler.  We had 2 kids sharing for the week while I tried to figure out what to do.  I ended up getting the albuterol solution which was still cheap and the liquid steriod and using a relatives old nebulizer machine...and then I switched insurance to kaiser.  Somehow, the inhalers at kiaser are the same old price.  :confused1:

[melbotoast]

Thanks for doing that! We have expired epi-pens at the moment. We paid almost $400 a couple years ago. Our allergist would not prescribe the generic for us because he said it was not reliable. It was about $100 less I think. 

[Carol in Cal.]

Calling our health care mess a 'system' is far too kind.

[Scarlett]

Yes. That was one of my girls. I was so nervous when they put the cameras in her face to ask her questions.

I was not watching it closely but I did stop and watch your dd talk. She did really well. And they are both adorable.

Edited August 16, 2016 by Scarlett

[moonsong]

Wow, this thread is making me sick:(

[cjzimmer1]

 

 Most insurance companies have a life time maximum benefit of 1,000,000.

 

I thought that was one of the things that was changed with Obamacare - no lifetime maximums. 

[nd293]

This is fascinating - I've never heard anyone in Australia complain (two kids at school with serious nut allergies). I looked it up - the standard over-the-counter price is $99 (although one of the allergy foundations says "$100-$150) but if you have an approved prescription following an anaphylactic reaction you only pay $37.50 (government subsidised). Why the huge price difference?

 

It's shocking...

[lexi]

Apparently they did a story on the evening news with different footage of our family! I had no idea. So, hooray for raising awareness to the soaring cost of Epi pens!  

 

Here's the link to the second story:

 

http://www.cbsnews.com/videos/rising-cost-of-life-saving-epipen-leaves-some-at-risk/

 

 

[cintinative]

Thank you so much for spreading the word. I waited until my epi-pen liquid went brown before I got a new one because of cost.

[cintinative]

http://www.slate.com/articles/health_and_science/moneybox/2016/07/epipen_costs_have_soared_450_percent_in_the_past_12_years_for_no_good_reason.html

 

" In September, reporting by Bloomberg Businessweek blew open the story about Mylan’s quest to make the EpiPen a cash cow; the device alone now makes up a full 40 percent of Mylan’s profits, thanks to a series of strategic marketing campaigns, public policy changes, and price hikes"

[Hypatia.]

My son just saw that on the news tonight! He asked if I saw it and said every time he sees something about Epi-pen, he thinks of when he had to inject me last year after an accidental injection of pine nuts. 

[Seasider]

Wow. I can't believe the company actually said they raised the price to better reflect the value the product provides.

 

In other words, they know some of us might die without epipens, so they'll charge us as much as they damn well want to.

 

:cursing:

I liked your post, but only to stand in agreement. There's actually nothing to like about the situation.

[kbutton]

Wow. I haven't gotten a new one in a while and had no idea the cost went up that much!

[Anne in CA]

I'm proud of you for going public with the right thing!