on raising awareness

Once upon a time...

In a land far away...

Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act.

See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials.

Suddenly the mommy...seizure saturated son in her arms...was thrust fully into the war that rages between hospitals...insurance companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.

In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.

Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.

But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.

Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.

How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.

Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.

Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.

Which leaves me wondering why?

Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?

Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.

I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.

Which brings me to my own suggestion?

If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.

I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.

I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...

Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?

If Acthar fails - Questcor will reimburse

It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.

Call me crazy, but I do believe that would generate some awareness.

(and to all my blog-friends you have my full permission to re-post if the desires so strikes you)


Lisa said...

I think ACTH more often than not is a joke. When Julia took it it was 2006 and vials cost $700/each. I can't IMAGINE having to pay $100k just to go through the disappointment of the spasms returning, like they did for us. They would never reimburse anyone for failed treatment because they'd be losing tons of money.

And quite frankly what do they care? IS isn't a sexy disease, if your kid gets it that's just tough luck and they have a captive market. It's still considered frontline so most parents are held captive and have to pay the exorbitant price.

I'm in awe of you that you testified on Capitol Hill. That is so impressive.

Thinking of you guys as your day draws near...

~Mama Skates~ said...

well said!

i love that advocating warrior Mama! & i'm praying that her upcoming battle has a VERY VERY happy ending!!! ♥


Adesta said...

Well said D!

I made a post on my blog about this too after reading Ken's. I think I'll go add a link to your post so that my readers can read it from your prospective too.

JSmith5780 said...

Linked to you and Mike

Holli said...

What beautiful writing on a not so beautiful topic.

I may just link to you and everyone else because I just don't have it in me to give this subject the justice it deserves...

Colby said...

The whole situation just totally sickens me...

I have said this for 20 + years and more than once online....It is ALL a "racket"...The drugs? The medical equipment? Even adult diapers?? A "racket" sucking the life out of the most vulnerable....

I LOVE to see your fighting spirit...Especially now...I can feel you getting all revved up...I am in awe....


Anonymous said...

It's illegal advertising to the neurology community since Acthar is not FDA approved for the treatment of IS. Worse yet, CNF is condoning it. As usual, Questcor takes the unethical route of putting the screws to our kids. If they wanted to have IS awareness week, they should be celebrating the FDA approval of the first IS med - Sabril! Maybe CNF should invite Lundbeck to the party:-)

Erin M.

Sinead said...

What do I want from IS awareness week?

No parent should ever have to diagnose their child on YouTube
No parent should be told that their IS child just has colic, reflux or a delayed startle reflex.
No parents should be offered the choice between keppra and depakote as the first treatment
Neurologists should put out an agreed statement on treatment protocol
IS should be brought to the attention of pediatricians, nurses and nurse practitioners as an emergency condition that it is valid to refer a child to the ER with.
EI therapists should have a pool of information on the best way and the best intensity to treat children and help them close the gaps.
All people with IS should have access to the same quality and cost of healthcare as I am lucky to have.

Carolyn M said...

I just read this post. I was shocked that that the cost of the vials has increased so much... I know from our 1st to 2nd course it jumped about $500 a vial in the space of 4-5 months... I was very shocked then.