there are no words...

I know because I've tried to come up with them. It has felt impossible to give verbiage to the emotions that ambushed us and sucker-punched the wind from our bodies.

But after reading a recent article I feel that I must attempt to share our ACTH journey...

One minute we were holding our beautiful, perfect son. The next our whole world was falling to pieces. Our life took a turn that even in our wildest imaginations we couldn't have conjured. At an innocent 7 1/2 months old, Trevor, was diagnosed with a rare and catastrophic seizure disorder. Infantile Spasms.

All three neurologists we consulted told us the same thing. If we didn't get his seizures (and their symptoms) under control Trevor's developing brain would be irreparably damaged. The only thing between him and a shot at a normal life was ACTH.

Jonathan, my husband & best friend, has always been my rock. My Gibraltar. He has been the stabilizing force to my Italian passion.

But in the few days between Trevor's diagnosis and that day in the hospital...I held him sobbing. The pair of us a mess. It is the only time I ever heard my husband sob like that...uncontrollable, gut wrenching, emotional sobs. It is the only time in 9 years that I have ever heard him say he wished he were dead. Because death offered freedom from this fight! This battle filled with ugly...disgusting...vomit inducing...combinations of anger, fear & sadness.

I remember feeling shocked & numb. I remember crying. I remember holding Trevor who had already received two injections (one from a nurse & one from daddy who was learning the art) of ACTH. Hope in a syringe.

The doctor came to us upset and out-raged. Our insurance company had not just denied coverage...they had stopped shipment on his liquid hope. They went so far as to tell us if we proceeded with the treatment they would not cover any intervention needed for side-effects incurred! And they offered no assurance for future treatments Trevor might need.

Why? All because the price of Trevor's hope-juice had shot through the roof faster than the price of Iraqi oil.

Last summer the price was $1500 a vial. Steep enough. Today Questcor is charging $40,000 a vial. Don't rub your eyes...that is NOT a typo. And our baby boy needed FIVE vials! At $40,000 a pop...you do the math...
In a recent report...
Steve Cartt, a Questcor executive vice president, said the new price was chosen by looking at the prices of other specialty drugs and estimating how much insurers and employers would be willing to bear.
"We did some market research," Mr. Cartt said. Talking to pediatric neurologists and others about various pricing options "gave us some comfort that the strategy would work, and physicians would continue to use the drug, and payers would pay," he said.
"The reality was better than we expected." (read more...)
The pharmacy offered to ship us Trevor's first vial if we could front the payment. We don't even have that much in available credit! Prior to Trevor's diagnosis we were doing mission work in poverty stricken Tanzania, East Africa. Giving back in our own unique way. Never dreaming it would be our own child needing the saving. And like the stereo-type...we just don't have that kinda money hanging around. If ever in my life I thought I had hit rock bottom...that was the day. We were walking in the valley of the shadow of death...and stumbling.

That moment...that hospital room...will forever be seared into my memory. I will never forget holding my seizure wracked son and squeezing him like my life depended on it. Like somehow if I just hugged him hard enough I could make him better. Kiss the boo-boo. But I was powerless.

I have unrepentant hate towards Questcor and our insurance company. Talk about no heart. No compassion. Unprecedented greed. Trevor was a 7 1/2 month old baby with his whole life ahead of him! A BABY, for crying out loud! Talk about taking advantage of people! I mean, what parent wouldn't mortgage their life for their child in desperate need?!

We are not the only one's who fought this battle. There are others...

For us...after much fighting, writing (our neuro wrote a scathing letter) and even screaming...our insurance company (for which we pay approx. $800 a month for coverage btw) finally agreed to cover Trevor's treatment.

Which also ended up being his miracle drug. Trevor has been seizure free since his fourth injection. In fact, he just celebrated his 1st birthday on April 3rd by taking a handful of solo steps! Something we weren't sure he would ever do. Every day seizure free offers another chance for his little brain to continue to thrive and develop. Today we're celebrating our toddling miracle boy!

But deep in my heart I am aware that the battle rages on between insurance companies, Questcor and families being torn apart by this catastrophic condition.

And I MUST do something. This attempt at putting words to our story is my way of paying tribute to my son and his extraordinary courage! It is my gift to other parents by giving voice in hope of change!

I implore other's with stories to share to do the same! Friends and family can share as well! Maybe together, with united voices, we can write a different story for the next family touched by this tragedy.


Shanna Grimes said...

Wow!! Those were powerful words. I don't even know what to say. I am so sorry that you had such a terrible experience with the drug company and the insurance. I am glad that it all worked out an you were able to get the drugs he so deparately needed.

In that arena we are extremely fortunate that we did not have any trouble receiving the ACTH. We did have trouble with receiving Keppra, her first seizure med for the partial seizures, but I think by the time we got through that, they knew not to mess with our doc about covering meds.

baby trevor's mommy said...

I still can't believe how dark that week was! And even tho they ended up agreeing to cover the cost...they would only allow the drug co to ship it out one x one. In case Trev experienced some of the horrible side effects and had to stop treatment, you know! Boy did I fight with our *case manager* over that one! It's like high BP or permanant retardation!? Grrrrrrr! And murphys law, the drug co forgot one of the vials...it arrived two days late! Fortunately one of the nurses at the hospital snuck the remaining vial to us...because the hospital had a policy that we couldn't have the unused vial! It's all a mess! A big humongous mess!

Thank you for feeling the passion tho! I poured my heart into this post...and even though I re-read it & would totally edit...this was a heart post.

And I NEEDED to get it out...


JSmith5780 said...

Steve Carrt... what an a$$ (btw he's no longer with Questcor) but the line ... "how much would [they] be willing to pay" burns me everytime. He makes it clear that they set out to screw people. And their reasoning... not enough people know about it's use for IS so they have to get FDA approval! Bull. Excuse my language but I don't think there is a single ped neuro that doesn't know about ACTH.

It is just so sad. Have you ever read my posts from that times frame? Go back to late Aug and early Sept and find the posts. Just as hate filled!

JSmith5780 said...

I am sorry those early days of the diagnosis were so hard for you. It is heart-wrenching even to read it now and I am sure it was to write it.

In a way, we had it SO much easier. When Austin started seizing, we were told it was atonic (head drop) seizures. Even as it progressed into classic IS over the next month, no one called it that. No one even called it Epilepsy. In a way I had nothing to be scared of because I had nothing to research.

It wasn't until after the twins were born (a month after A's diagnosis) that I finally took the time to start researching. For us, the focus was on his brain abnormality and the possibility of Rassmussen's (much scarier). We still didn't know about IS. It wasn't until Austin's 5th month of seizures that we got that diagnosis.

It seemed so much easier than the fact half his brain might be dying.

No matter, I'd never wish this journey on anyone!


~Mama Skates~ said...

love posts like this - straight from the heart!

kudos to u and ur hard fight - what a mother won't do for her child?! i'm so sorry u had to deal with this, but soooo happy for the success that has come out of it!

Mmmmaaahvelous said...

My heart goes out to you.
It was just this week that I was watching Oprah with Michael Moore and an insureance bigwig go head to head about the situation in the US.
I can't imagine what you're dealing with.
Your story and plight brings tears to my eyes, yet I'm glad to have found your blog as it's been hard to find other people who have small children with Epilepsy. My son was diagnosed at 10month. He's 14months now.
I am sending you hope and strength not to forget good times with your family & little man.