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.



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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 there
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 it
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. ASAP
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
hand). SO FRUSTRATING.

Any advice at all????



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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



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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.