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Three blonde, blue-eyed siblings are named Suzy, Jack and Bill.  What color hair does the sister have?:
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Posted by: hezzier
« on: May 29, 2018, 10:01:30 AM »

Well, he has a set of epi pens at school as a back up so he would only carry the auvi’s to school.  If he was going anywhere else he would need to carry a set of epis, which we have plenty of.  Finding a pair of pants or shorts that fit epis in the pocket is nearly impossible.  Once he gets to HS, they carry their backpacks everywhere.  Most kids don’t use the lockers because the building is so spread out that it’s not convenient to use them.  So we just have one more school year to get through.
Posted by: spacecanada
« on: May 29, 2018, 09:18:49 AM »

Istudies have shown that epinephrine autoinjectors are good for up to four years, with something like 80% potency, but I would never let a primary device expire.

Someone in my local allergy group is in contact with Kaléo and in discussions about bringing them back to Canada.  Apparently the $300/device cost is too high for insurance companies here to cover.  (That is the cost she mentioned, in Canada.). The new robotic manufacturing method has made these much more expensive to make.  So she is building a case from local families to bring to Kaléo showing demand here... But I doubt many people will pay $600 per set, when people already complain that $100 is too much for one EpiPen, and many people here still don't carry two.  Me, I'd pay the $600 for infinitely more comfortable devices when training every day - seriously.  Allerject fit in all my pockets, EpiPens fit in NONE, not even my cycling jersey, and waist pouches are starting to injure my back when running long distances. 

This link may be helpful here with regards to temperature:
https://community.kidswithfoodallergies.org/blog/researchers-review-effects-of-heat-cold-on-epinephrine
Yes, yes... I know the source, but it's a good article.
Posted by: hezzier
« on: May 29, 2018, 09:05:25 AM »

So bummed that we cannot get anymore of these.  What's the latest theory of how long they are good for?  I think DS's set expire this month.
Posted by: TwoDDs
« on: May 29, 2018, 08:22:34 AM »

Also just got free Auvi's subsequent to allergy appointment.  14yo is thrilled to have them back.
Posted by: GoingNuts
« on: May 27, 2018, 02:02:41 PM »

DS saw his allergist Wednesday AM before heading back up to school.  Allergist wrote him a prescription for AUVI, so he’d have both Epipen and Auvi.  He asked if there were any discount cards, and his allergist said they would ship them directly to him with no copay. He had them by Friday morning. 
Posted by: nyguy
« on: October 17, 2017, 02:56:48 PM »

For how long are they good?  THAT is the question.  One that shouldn't even be the case for a company setting the market price on these at a total of $15,000 for 3 twin packs.  Rescue medication more than half the price of my new low end car should not be something I have to wonder about. 

Calling fulfillment took place long before I posted here.  Lots of shrugging, not terribly convincing any substantial thought was popping on that end.  I would not accept any other piece of equipment for deployment in the field that was handled under conditions clearly contraindicated let alone for a patient, never mind my own kids.  I'm not opening up to debate if I'm done with them.  I AM.  Last time I went a few rounds directly with the head of brand when they were with Sanofi.  Kaleo clearly cannot unfornicate distribution with any durable consistency.

I'd complain directly to Kaleo, but as someone who keeps my epinephrine on my person, the size and form factor is really critical to me as I carry it on my person (in a jacket or in my pants pocket) and not in a backpack or separate carrying case.

The ASPN people are not the people who have real action, they just send it out randomly to a network pharmacy. Calling fulfillment is going to get you ASPN, not Kaleo.
Posted by: name
« on: October 16, 2017, 01:57:37 PM »

For how long are they good?  THAT is the question.  One that shouldn't even be the case for a company setting the market price on these at a total of $15,000 for 3 twin packs.  Rescue medication more than half the price of my new low end car should not be something I have to wonder about. 

Calling fulfillment took place long before I posted here.  Lots of shrugging, not terribly convincing any substantial thought was popping on that end.  I would not accept any other piece of equipment for deployment in the field that was handled under conditions clearly contraindicated let alone for a patient, never mind my own kids.  I'm not opening up to debate if I'm done with them.  I AM.  Last time I went a few rounds directly with the head of brand when they were with Sanofi.  Kaleo clearly cannot unfornicate distribution with any durable consistency.
Posted by: spacecanada
« on: October 14, 2017, 10:43:21 PM »

So long as they didn't freeze they should still be good, according to a Canadian study a few years ago.  Heat is far worse for epinephrine autoinjectors than the cold.  Allerjects/Auvi-Qs are supposed to be water-resistant too.  I would call the company before discarding them. 
Posted by: name
« on: October 13, 2017, 09:42:07 PM »

They arrived today.  COLD to the touch with a COLD PACK inside the insulated jacket.  I am done with Auvi-Q.  Soup sandwich.
Posted by: hezzier
« on: August 14, 2017, 07:29:13 PM »

Well, our luck has run out.  Called in for our 3rd refill of Auvi-Q and the guy on the phone apologized that it was taking forever.  It seemed like it was all good and gave me a delivery date.  He called back later saying that we needed a pre-authorization but that he had put in the paperwork for it so it might take a couple days.  Allergist office called asking why they got a request for a pre-authorization for a prescription that was done back in March.  I explained to the nurse that they had made a mistake and sent us the Auvi-Q on the free program so we were trying to get our third set.  There is really nothing that they can do.  I may try and call back tomorrow and see if what happens.

A real bummer since we are down to one set of Auvi-Q's since DS left them sitting on his desk in the sun for a week.
Posted by: nyguy
« on: June 20, 2017, 10:23:44 AM »

Parents refilled Auvi-Q while ExpressScripts still paid for it. Shipped and arrived within two days of requesting refill.

I'm now getting a new scrip to ASPN (Direct Delivery) and seeing how much they sit on it now that my PBM (Caremark) will not cover Auvi-Q. Bet it takes weeks.

In the meantime, Express Scripts is suing Kaleo (manufacturer of Auvi-Q and Evzio, an autoinjector for opioid overdose).

A lot of the lawsuit is redacted (sensitive info), but Express Scripts is saying that Kaleo had price protection rebates that they paid to Express Scripts (some of which were sent to customers e.g. insurers, and some of which Express Scripts kept for admin overhead). They say from 2014 up until March 2016, Kaleo paid these price protection rebates as they increased the price of Evzio. Then from that point onward, Express Scripts alleges that they invoiced millions to Kaleo for the price protection rebates as agreed, but Kaleo paid them in part rather than in full (breaching the agreement). A lot of the interesting stuff that spells out the exact terms is redacted in full, but basically on February 1st 2016 they quintupled the wholesale acquisition cost of Evzio from a little over $900 to $4500+, and basically immediately stopped paying the price protection rebates thereafter (they paid barely any of the invoiced amount in May 2016, and stopped paying the price protection rebates at all in June 2016).

What the redacted portions block out is the really interesting part - they are likely specific figures and percentages of the rebate scheme. I suspect the rebates are far in excess of what is normal for a brand name medication (where 50% maybe would be normal), allowing the larger PBMs like Expressscripts to get pricing where they deemed the whole thing worth covering, and allowing Kaleo to negotiate less bargain prices with smaller PBMs or just get wholesale reimbursement of the list from permissive insurance plans.

Considering Kaleo only has two products on market, playing fire with one of the biggest PBMs in the US is pretty gutsy - and judging by ES taking Auvi-Q off the formulary, I expect they are twice burned, once shy. I think the price of Auvi-Q will probably drop substantially in the next year, but time will tell.

EDIT: They got the new scrip from my doctor and called back immediately, they confirmed that they can send me one carton (two injectors/two trainers) in two days, and that they are filling it for me for zero out of pocket since my insurer won't pay. I'll update if it's actually done in a timely fashion as I have heard reports of delays (and when it was re-introduced, my brother's prescription filled when his insurer wouldn't pay took almost three weeks, when they filled it immediately for those of us with insurance who would).

EDIT 2: Shipped from a different pharmacy than the first time a day after filling the scrip with direct delivery. Guess the shortages are over for direct delivery, hear anecdotally that Auvi-Q is still very hard to get at retail.
Posted by: spacecanada
« on: May 19, 2017, 01:06:49 AM »

(Deleted) I had a rant written about how this whole thing is messed up, though I wouldn't even know where to point the finger of accusation.  Is Kaleó to blame, or is the American medical and pharmaceutical structure as a whole?  It saddens me at a deep level, where ethics meet the greater society.
Posted by: momma2boys
« on: May 18, 2017, 09:13:50 PM »

I honestly expected an uproar over this after the Mylan ordeal.
Posted by: gvmom
« on: May 18, 2017, 09:08:19 PM »

Okay, see.... I don't feel so crazy now.  That is all I needed. 

I just need to be able to say, "I know, right?!" to move on. 

So..... momma2boys:

Ya the whole thing bothers me too. We aren't getting them. After the whole Mylan pricing scandal they could've taken a large chunk of the market by being reasonably priced. They went total opposite on that.  

I KNOW!  Right?!

 :bye:
Posted by: momma2boys
« on: May 18, 2017, 08:23:21 PM »

Ya the whole thing bothers me too. We aren't getting them. After the whole Mylan pricing scandal they could've taken a large chunk of the market by being reasonably priced. They went total opposite on that.