in moderation...

The following comment has been awaiting my moderation for days now. My brain has been a bit pre-occupied. With our trip to DC. And with my son's continuing medical care. I've been otherwise engaged...but have finally reached a place to share my thoughts. Honestly...I'm not even sure that it was worth responding...but I have all the same. Maybe it burned some extra calories in lieu of re-vamping my workout sessions?

**side note** For the curious...I set my comment moderation ages ago when some...the word dude comes to mind...from Italy said "hi". When I followed his profile link I must admit...I just decided I'd rather moderate. No biggie really. I have however...enjoyed the random moderation opportunities since Mr. Italy! Including PL's below**

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. PL


Bravo. You've managed to capture magnificently the take on this topic from the position of an outsider. One who has never held a seizure ridden baby. A person who has never faced the horror...the true horror...of learning that not only does your child have a catastrophic illness...you also can't afford the medication needed to save his life.

Perhaps my friend stretched the truth a bit with a price tag of $60k. Maybe you're right. But really ,PL, is $40,000 that big of a stretch from $60,000? Especially considering the following:

We paid $26k per vial of Trevor's treatment just half a year ago. Today Acthar gel is listing for as much as $36k and change per vial. Hmmmm let's see...I've never been great with math but if I'm using my calculator correctly that adds up to approximately $1250 increase each month since December. With no sign of slowing that I can see...that would mean in just over a year from now my friend's exaggeration could be a reality.

So if a cede the point above to you...will you do the same for me? And come clean about Questcor providing *free* ACTH to families in need. One of the first things I did was call the Acthar support & assistance line where I spoke with a very cordial but obviously un-informed on the devastation of IS young lady. She was kind enough to inform me that once we & Trevor's doctors filed the appropriate paperwork we could begin the THREE business day process towards approval. She also informed me that even though my little 7 1/2 month old baby boy was suffering from 40 plus seizures daily which were only growing more violent...that did not mean that our family would automatically qualify for the *free* Questcor Acthar.

Now this is from the view point of just a mom...an IS mom...but it seems to me that if Questcor were really interested in rescuing babies like Trevor that they would send the medication & worry about the paperwork later? Or, heck, even have an emergency procedure in place for a flash approval? I can't help but wonder if Questcor is banking on the fact that parents in a crisis point will respond by finding the quickest route towards saving their child rather than the pending three business days plus route? Like we did? But then...I'm just a mom.

A mom who readily admits that she cannot wrap her mind around all the many layers of this issue. They are quite complex. I can however wrap my mind around something a little less complex. Perhaps a little more compelling - if one has a conscience that is. That would be the terror that clamps the heart of a mom with a very sick baby and no ability to access the drug that could save his life! That, I can understand. And my very very personal understanding of that layer in this very complex issue is what compels me to speak out. Compels me to continue to share our story...in the hopes that I may be protecting it from becoming someone else's!

Yes, PL, my intentions are good. Can you...with a clear heart...say the same?


Well...now that I've got that off my chest!


JSmith5780 said...
This comment has been removed by a blog administrator.
JSmith5780 said...

Danielle- well said. I am so excited for your trip this week!!

PL- not sure if you are affiliated with QCOR in anyway.. an invenstor perhaps? The point is, there was NO REASON for the price increase. Yeah yeah say it was because they were trying to gain FDA approval and spent money on upgrading their manufacturing equipment. The point is the FDA didn't feel the need to give the IS indication so why should those that suffer and need Acthar gel (MS and IS sufferers) foot the bill? Why should QCOR abuse the Orphan Drug Act, which is in place to encouracge NEW mecications for little known illnesses. THAT is the crux of this discussion. Read this blog post (http://brassandivory.blogspot.com/2007/09/questcor-uses-orphan-drug-act-as.html)
It is VERY informative and written when Acthar was a mear $23K last September. Here we are nearly 10 months later and the price is closer to $40K.

I understand businesses need to make money, but the way they went about it is disgusting and abusive to patients that NEED this medication.

Enough said...

July 21, 2008 5:08 AM

Adesta said...

Well said Danielle!! I read that comment by PL and although I don't have a child with IS, I wanted to rip him/her a new one with the knowledge that I have from you and from Jen. *sigh* It's disgusting how ignorant some people really are.

~Mama Skates~ said...

THAT is why u've been invited to speak before the Joint Economic Committee! you go gurl!!! xoxox

Shanna Grimes said...

No words, because they aint pretty. Don't want to have my comment removed for bad language.

You are doing a great thing, Danielle.

Monica, James, & Connor McGuire said...

You go girl. I was cheering all along reading this!! I agree obviously "PL" has never seen their small infant seize and wonder what their future will hold. I think they picked the perfect nickname: PL= pathetic loser. I get so enraged when people that have never walked a mile in our shoes tries to make uninformed comments. Until you've been there...you just don't know what it's like. Okay, I gently step off of my soap box now. =)