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?
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?
Comments
I would hope that Ovation Pharma can use this to help sway the FDA to approve Vigabatrin.
On a side note, hope Trevor is doing well and wanted you to know we are praying for him
http://messages.finance.yahoo.com/Stocks_%28A_to_Z%29/Stocks_Q/forumview?bn=79779
read the topic "New Distribution Agreement"
To Dawson's parents...I hope the days between seizures keeps growing!
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!
...danielle
PL
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
http://trevorshope.blogspot.com/2008/07/in-moderation.html
of by clicking my ACTH label and following down the the post titled "in moderation"
...danielle