another Acthar waiting game

I don't have tons of time to (do much of anything really) read through all the emails filling my inbox from the various IS forums I belong to.

But this one caught my eye...and is being shared with permission of the family.


Hi all,

Has anyone else had trouble getting ACTH?

We had it prescribed on Monday. On
Tuesday our neurologist office faxed
everything to the insurance company and to Acthar Support and Access Program.

It seemed like all was moving along and we'd have the ACTH in hand on
Wednesday or Thursday at the latest. Then we got called yesterday that
was a delay with the insurance
... that it looked like they were going to
cover it under major medical (with a $5200 copay on our part that "should"
be picked up by a national organization for rare diseases??) but that
hadn't been approved yet
. I have had 8 phone calls today between the ASAP
program and the insurance company and nothing has happened. The nurse who
was reviewing the case at the insurance company said that she was finding
"conflicting evidence" about ACTH and since it wasn't FDA approved they may
not approve it, even though the doctor had shown medical necessity.
says that if it is denied, it could take weeks to do an appeal
. Of course we
aren't getting the ACTH until this is figured out.

I was so so hoping it would be figured out today so it could be on it's way
to us tomorrow and we could get this started... we don't get delivery on the
weekend so if nothing happens in the next few hours, we are looking at
Monday as our best case (
which will be a week from prescription to drugs in

Any advice at all????


I beat back my exhaustion and started whipping out emails. Like this one which I sent to Don Bailey, CEO Questcor.

Mr. Bailey,

I would love to think up some cleverly witty email filled with innuendo and subtle sarcasm. Two glaring reasons stand in my way.

1) Even after a quarter of a million dollars worth Acthar being injected into him...Trevor continued to have hundreds of thousands of uncountable seizures slowly stealing his life from him. And is now just a handful of weeks post radical brain surgery. Not much time for fun.

2) The urgency of the email below.
(I forwarded the thread)

For the life of me I CANNOT comprehend why this is still continuing to happen. Surely with your recent management expansion you could find a way to make the process of obtaining your VERY expensive drug less complicated.

And for the love of all that is holy I would hope that this amazingly brave little family has the drug on their doorstep tomorrow.

...danielle foltz


Do I really think my voice bears any weight with Questcor? With Bailey?

I used to be that naive.

But that doesn't mean I'm going to be silent.


JSmith5780 said...

The worst part is this is twice in one week!!! Quinn (see link on Sophies blog) had issues getting their ACTH too!

It's BS. Families shouldn't have to deal with this on top of everything else!

Noah's Mom said...

I'm glad you are fighting for the good guys! Your words are like daggers (they break my heart and then some!) and would work on me if I were the CEO of Questcor. :) Keep fighting the good fight. I wish there was something we could do. I fear this may be our fight sooner than later unfortunately and it scares me to death. I'm so happy I have people like you on my side.

SupermomE11 said...

I love you Danielle! THANKS!!!! :)

Sinead said...

You're a good woman Danielle.

Anonymous said...

Incompetence at it's best. These guys haven't a clue how to run a business beyond jacking the price up to ridiculous. For this they can collect a huge bonus and have no problem sleeping at night.

Lundbeck has managed to enter the US market without a hitch and parents have been praising the ease of getting Vigabatrin. I guess Questcor can expect another large revenue drop next quarter. Can't wait to see those bonuses dwindle to nothing:-)

Erin M.

Adesta said...

Danielle, remind me to never get on your bad side!! :)

Glad to see that you are still going to bat and emailing this horrible company on behalf of other families that are fighting for ACTH. It's downright absurd that they make it so hard to obtain this drug even after the doctor states it's medically necessary to have.

Praying that this family gets the ACTH before the weekend and that it actually helps their child.

What a nightmare!

JSmith5780 said...

People earn bonuses, Questcor has done nothing to earn bonuses.

It makes me sick that a company and staff making as much as they do, can't find a better system. Maybem if they get FDA approval, they'll be forced to set up a system similar to Lundbeck?

Michelle said...

You wrote me while Trevor was recovering just hrs after his surgery, Michelle Mother of baby kate w IS. I just wanted to say I love seeing those kisses(video), makes me so happy!Baby Kate is seisure free right now and like you, enjoying but afraid they will come back. I am living in this glorious moment. thanks for sharing your words.

Mom Next Door said...

I am always horrified to read such emails. And I always send a silent prayer that we had been so much luckier getting ACTH for Reva.
I have no idea how to go about it, but can't we, the IS parents, start an online petition or something..? Anything at all...?

Megan said...

Danielle, can I repost this? My family had struggles with insurance covering ACTH too. Fortunately, ASAP and NORD somehow came through for us without too much hassle.

SupermomE11 said...

Maybe I spoke too soon... looks like the earliest we'll have it is tomorrow. I told everyone yesterday that if it didn't go out yesterday we wouldn't get it today because we don't live close to a major airport. They kept saying they could "same day" it to us, and I told them it wouldn't work.
At noon their time today they still hadn't sent it, and sending it "same day" would get it here at 5am tomorrow. Still don't have confirmation it has been sent, although they are working on it and I should hear soon. So, looks like tomorrow instead of today...

Anonymous said...


Erin M.

Anonymous said...

You go Danielle!!! It is so crazy!! You never know what words might make someone think a little bit harder. It NEVER hurts to try. You are one amazing mommmy...

kisses for Trevy...


Colby said...

Sick...Just SICK....As I have said before, it is just a "racket"...

You, sweet girl, are the epitome of a true advocate....Thank God for you....

You are amazing....


Monica~ James~ Connor said...

OUCH!! Girl, you threw some daggers in that letter! If I was that guy, I would have been hopping a plane and hand delivering that stuff. Remind me to never make you angry. I'm so thankful that we did ACTH before all of this mess started....especially since it didn't work!!! Thank you for being such an advocate for IS families!! xoxo