Wednesday, December 17, 2008

Blushing Ovation

Last summer I testified before the JEC in DC regarding Questcor's (outrageous) price point for ACTH. In that hearing I was given the opportunity to spill our family's guts before the panel members about how the pricing (hellish-ly) impacted our journey to provide Trevor with immediate...critically necessary...treatment.

During that hearing I heard something that has haunted me since.


I learned that...


Questcor was not the only company taking advantage of people who find themselves facing unimaginable horror. OVATION Pharmaceuticals was also being presented for their own trespasses against families in desperate situations. Shortly after purchasing Indocin I.V. (the drug used to treat preemie babies who are born with holes in their hearts) they hiked the price by 1300%!


Why should I care? Other than having a conscience...I also knew that...


OVATION Pharmaceuticals Inc. has acquired the exclusive North American rights for two drugs to treat epilepsy, Sabril and Frisium, from French drugmaker Aventis SA for an undisclosed sum. read more...


Sabril is also known as Vigabatrin. Which Trevor is currently trialing. As are other IS babies. Some of whom are finding the priceless miracle of seizure freedom.


And I knew that Sabril (Vigabatrin) was on the fast track to be presented by OVATION for FDA approval in treatment of Infantile Spasms.


So while I desperately want to open more options for babies like Trevor. And families like my own. I was very conflicted about how to feel about Vigabatrin's pending approval? We currently pay approximately $125 per month out of pocket for Trevor's Vigabatrin. Because we currently have the option of purchasing out of country. But should Ovation get their hands on FDA approval...and as such exclusivity...


I feared that OVATION would pull a Questcor on Vigabatrin's price point!


And then a friend emailed this Press Release from (my fave madam) Senator Amy Klobuchar's office.


And somehow after reading Sen. Klobuchar's take,

“A company like Ovation knows that, when it comes to saving a baby’s life, price is no object. They literally banked on it. But the FTC is now knocking on their door and demanding that they return the money they gained illegally.”


I'm breathing a little easier about what exactly FDA approval for Vigabatrin might mean for our budget this year!


Merry Christmas to All...

5 comments:

JSmith5780 said...

Thanks for sharing the press release. Aince the JEC meeting when I heard about Ovation, I, too, had been cringing at the thought of what they could do to Vigabatrin. You know, no one is a bigger support of Vig than I am, but I didn't want it approved if they could perhaps do the same thing! This definitely relieves my mind.

I hadn't realized they gained rights to frisium also. Interesting!

Marissa said...

They've got clobazam too.

~Mama Skates~ said...

there's goes that advocate mama that i love! ;0) wow, it's so crazy that this is a "game" u have to keep an eye on & b prepared to possibly b totally robbed in the future! i can't imagine the stress - the worry! good for ur girl, amy....and other senators, congressmen, parents & advocates like u! i pray that they/u continue to stand up for what's right & for their/your/our babies!

xoxox,
sharon

Shanna Grimes said...

You advocate you! I will repost this to our blog manana (tomorrow).

Mmmmaaahvelous said...

Wow.
That's just incredible. I'm almost speechless.
I learn so much from you!