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Oh. My. God. - Twinmama Extraordinaire
More than just a mom
katie_rose
katie_rose
Oh. My. God.
I *LITERALLY* feel sick. This is a rare PUBLIC post of mine, to spread this word to as many people as possible.

The manufacturers of ACTH (adrenocorticotropic hormone), Questcor just announced that they are raising the price of ACTH from ~$1,000 per vial to OVER $10,000 PER VIAL. (A typical course of ACTH can range from 3-6 vials of ACTH).

This is an absolute OUTRAGE, and I am BEYOND sick about it. ACTH is a first line med for Infantile Spasms, and many, MANY insurance companies already fight paying the $1k/bottle. Fewer and fewer kids will have access to this medication with this 1000%+ increase in cost.

Please, if you have a moment and feel so inclined, please give Questcor a shout (1-800-411-3065) & let them know that a 1000% increase on a medication that so many CHILDREN need is an outrage. That their bottom line & profit should NOT come at the expense of children's lives.

Current Mood: angry angry

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Comments
pinkshake From: pinkshake Date: August 28th, 2007 11:36 pm (UTC) (Link)
They closed at 3PM Pacific Standard Time. I'll try tomorrow.
katie_rose From: katie_rose Date: August 29th, 2007 07:19 am (UTC) (Link)
Thank you!! Turns out the actual cost of each vial is going to be OVER $23,000!!!! OUTRAGEOUS!!!
beingpatient From: beingpatient Date: August 29th, 2007 01:14 am (UTC) (Link)
Ricky and I will both call - we are uneducated in this. What do we say?
katie_rose From: katie_rose Date: August 29th, 2007 07:24 am (UTC) (Link)
Thank you free-enterprise medical system. Turns out the final cost PER VIAL is OVER $23k!!!

I'm hoping my phone call doesn't contain colorful language.

Here's what another IS parent suggested:

You don't have to be nasty (unless you want to ;)) just call the number and say something like "My name is Mike Bartenhagen my son Broc was diagnosed with IS 5 years ago and we were shocked to hear the price of ACTH was going to increase to over $10,000 dollars a bottle." Let them know you are going to discuss this with your neurologist and you are sure he will share your opinion and also let them know parents are very much aware of other effective treatments for IS like Vigabatrin and Ganaxolone.

I would suggest revising it to something about a loved one being diagnosed with IS, having gone through TWO rounds of ACTH (using AT LEAST 10 vials of ACTH). This would put a significant financial strain on the family, and you will be passing along any & all information to as many people as you can reach.

You could mention that you're part of the blogging world & will pass info via that media, and also maybe that you're at the "investing" age, and if this is how Questcor treats children who RELY on this medication, you will not be investing in their company.

Because, let's face it. Dollars (OBVIOUSLY) talk. LOUDLY.
2littlemonkeys From: 2littlemonkeys Date: August 29th, 2007 01:28 am (UTC) (Link)
Holy crap. That is just horrific. I will call tomorrow. I have an unmitigated hatred for most pharmaceutical companies anyway, but holy crap. How evil can they be?!
2littlemonkeys From: 2littlemonkeys Date: August 29th, 2007 01:32 am (UTC) (Link)
There is also an email address on the link you posted.

IR@Questcor.com

Who knows if sending an email there will do any good, but I'll do it.
katie_rose From: katie_rose Date: August 29th, 2007 07:19 am (UTC) (Link)
THANK YOU!!! Thank you!! Turns out the actual cost of each vial is going to be OVER $23,000!!!! OUTRAGEOUS!!!
janamke From: janamke Date: August 29th, 2007 01:48 am (UTC) (Link)
OMG!! What the hell! I will be calling tomorrow.
katie_rose From: katie_rose Date: August 29th, 2007 07:20 am (UTC) (Link)
Thank you!! Turns out the actual cost of each vial is going to be OVER $23,000!!!! OUTRAGEOUS!!!
mrsharris From: mrsharris Date: August 29th, 2007 03:22 am (UTC) (Link)
That should be criminal. Seriously. I'm an idiot, but is there NO regulating agency over these pharm companies.
katie_rose From: katie_rose Date: August 29th, 2007 07:20 am (UTC) (Link)
Nope, I don't think so. Thank you free-enterprise medical system. Turns out the final cost PER VIAL is OVER $23k!!!
glass_lion From: glass_lion Date: August 29th, 2007 04:26 am (UTC) (Link)
jawdrop
katie_rose From: katie_rose Date: August 29th, 2007 07:20 am (UTC) (Link)
Yep. Thank you free-enterprise medical system. Turns out the final cost PER VIAL is OVER $23k!!!
glass_lion From: glass_lion Date: August 29th, 2007 02:43 pm (UTC) (Link)
Normally I'm libertarian. Free enterprise ahnd all that.

BUT we have all signed on to the social contract, including govt regulatory agencies on such things as food and drug. We live with increased policing, in hopes of better safety. With such regulation should come controls on cost, too. And yet the only controls are when a group becomes loud enough to complain about the costs of some particular drug, as with AIDS drugs. That's a STUPID "system."
joplin1975 From: joplin1975 Date: August 29th, 2007 12:22 pm (UTC) (Link)
What the holy freakin' hell??? I'm astounded, K. Totally astounded.
lofo02 From: lofo02 Date: August 30th, 2007 03:51 am (UTC) (Link)
This is truely sick. Completely sick. I agree there needs to be some regulation over this type of thing.

I know you are trying to get the word out via internet. Has anyone tried to contact mainstream media to see if a tv station can run something on this? Really get the word out there.
16 comments or Leave a comment