beating the drum

I know that I beat the ACTH drum loud & often.

But the fact is...ACTH is day by day proving to be our miracle drug. Trevor's seizures have now been in remission for FIVE MONTHS! He is by no means *out of the woods* - as his continued abnormal brain waves reveal. And every day the back of my mind wriggles reminding me that the relapse rate is 50%. And that Trevor's risk is higher based on his subclinical activity. And I also know that ACTH fails 50% of the time. I have friends who have gained seizure freedom via alternatives like Vigabatrin...Keppra...Lyrica...and others who are still trying to find theirs.

But I will always celebrate the fact that we've had THIS time gifted to us by ACTH.

This time of seizure freedom.

This time of continued development.

This time of hope.

But I wonder if other families will be robbed of THIS time with their babies? If they'll be forced to use alternatives that may not work because their insurance refuses to cover the cost? If they'll live with the depression of feeling that they couldn't provide their baby with a frontline treatment...because the price was more than they could afford out of pocket? More than a house in some states? I remember that feeling flooding my own heart when our insurance originally declined Trevor's treatment...

I wonder & worry because today I learned from a neurologist in our clinic that Questcor is now charging...

$60,000 a vial

And so here I am...disgusted. Reviled. Angry. At a loss. Distraught because I just don't know what else to do?


JSmith5780 said...

There are no words, fit for print, that can fully explain my outrage! And we didn't even use the stuff!

I would hope that Ovation Pharma can use this to help sway the FDA to approve Vigabatrin.

Dawson said...

I would like to beat the ACTH drum with you. I am sickened and disgusted at the price of one vial of this drug. Childrens lives and well being are at risk so that one group of people can stick more money in their pockets. It literally makes me sick to my stomach. ACTH helped Dawson tremendously. It completely stopped those hard Tonic seizures and it also stopped the Hypsarethmias (sp) which has allowed him to progress and develope well. He is still having seizures despite the treatment but its nothing like what it was before the ACTH injections. What if our insurance wouldnt pay?? where would Dawson be?? What is happening to the kids whos parents have no insurance?? IT JUST PLAIN OLE MAKES ME SICK!!!

On a side note, hope Trevor is doing well and wanted you to know we are praying for him

JSmith5780 said...

Read this, it says the cost per vial is only $23269
read the topic "New Distribution Agreement"

To Dawson's parents...I hope the days between seizures keeps growing!

baby trevor's mommy said...

Jen - I almost called you I was SO outraged. And then defeated. Honestly, what is it going to take? I'm ready to take Trevor & sit on the steps of Congress and MAKE them look at him. And listen! I am all for free-market...but this is outrageous. More times than not human greed when left unchecked becomes this beast that is Questcor. Grrrrrrrrrrrr! I'm going to check out the site you left now...

J & A - thanks for the prayers...and I'm with you. The ACTH issue sickens me.

Our prayers are with you & your little man too!


Patrick said...

glad acthar helped trevor, but your friend is very wrong on the acthar pricing of $60k. furthermore, quesctor has been free acthar to anyone who's been denied by insurance. frankly, i don't know any other drug company who's currently doing that for people, especially infants and young children. i know you have good intentions, but it's really unfair for you to spread negative information on a company that helped your son, especially whent he information is wrong. God bless your family.

baby trevor's mommy said...


My thoughts on this issue are way too many to condense into a comment forum.

I have instead opt-ed to reply via a post...which can be found at


of by clicking my ACTH label and following down the the post titled "in moderation"