Do you know how difficult it is to pound out a post. With a 30 lb toddler on your knee. Cranky and clingy.
Because he just had half of his brain removed.
With the goal of gaining seizure control. To beat back the Monster inside his head. Which...according to the team of neurologists from Children's Hospital of Michigan...was attacking his developing brain more often than there are seconds in the day.
And that after two rounds of Acthar. (you can read about the hell we went through to access it for our son here and here) The drug with the hefty price tag (click here if you're curious what 60k looks like...keeping in mind that a whole course runs about 125k). The drug with the hefty price tag belonging to Questcor.
You know...the ones who sponsored Infantile Spasms Awareness Week.
Come again?
You say...you missed it?
Hmmmmmmm...
Could it be that it wasn't ever really about bringing awareness to the population at large.
But rather to their target demographic?
The FDA.
Because if you'll remember...I mentioned before (before I had a 2 year old recooping from radical brain surgery) that they would be doing so. I also speculated...would ironically do so during the same timeline of their so-called awareness week.
Turns out I was right.
According to this press release Acthar was resubmitted to the FDA on October 15th, 2009.
Interestingly followed just a few days later by an expansion of their of their management team...read more here. If you don't mind that churning stomach feeling.
I know there has been some differing of opinion regarding the so-called IS Awareness Week.
My grudge runs way too deep to be swayed. A passion that burns deeply in my soul to protect other families from living the hell we did.
In fact...this is precisely why I could never join hands with a company like Questcor.
And for the record...
I spend EVERY day of my life LIVING INFANTILE SPASMS AWARENESS.
There is not one person whose life touches my own that I have not attempted to educate ad nauseam about the complexities of Infantile Spasms. I am just as passionate about creating awareness as I am about not sleeping with the enemy.
Because he just had half of his brain removed.
With the goal of gaining seizure control. To beat back the Monster inside his head. Which...according to the team of neurologists from Children's Hospital of Michigan...was attacking his developing brain more often than there are seconds in the day.
And that after two rounds of Acthar. (you can read about the hell we went through to access it for our son here and here) The drug with the hefty price tag (click here if you're curious what 60k looks like...keeping in mind that a whole course runs about 125k). The drug with the hefty price tag belonging to Questcor.
You know...the ones who sponsored Infantile Spasms Awareness Week.
Come again?
You say...you missed it?
Hmmmmmmm...
Could it be that it wasn't ever really about bringing awareness to the population at large.
But rather to their target demographic?
The FDA.
Because if you'll remember...I mentioned before (before I had a 2 year old recooping from radical brain surgery) that they would be doing so. I also speculated...would ironically do so during the same timeline of their so-called awareness week.
Turns out I was right.
According to this press release Acthar was resubmitted to the FDA on October 15th, 2009.
Interestingly followed just a few days later by an expansion of their of their management team...read more here. If you don't mind that churning stomach feeling.
I know there has been some differing of opinion regarding the so-called IS Awareness Week.
My grudge runs way too deep to be swayed. A passion that burns deeply in my soul to protect other families from living the hell we did.
In fact...this is precisely why I could never join hands with a company like Questcor.
And for the record...
I spend EVERY day of my life LIVING INFANTILE SPASMS AWARENESS.
There is not one person whose life touches my own that I have not attempted to educate ad nauseam about the complexities of Infantile Spasms. I am just as passionate about creating awareness as I am about not sleeping with the enemy.
Comments
I'm still baffled by this company and hope that Quinn gets the treatment she needs soon!!!
On the QSC message boards they attacked Erin for commenting that Vig costs $1500 a MONTH (before insurance coverage) AND the child could be on it for two years. All I could think is I'd STILL rather pay $36K for two years of seizure control than $125K of perhaps seizure control for ACTH!!!!!
Grams