Tuesday, March 10, 2009

ACTH: Most Expensive Drug on the Planet?

Bennett has been home with us since Saturday early evening from the hospital. He is taking an oral steroid, called Prednisone, as an attempt to treat his epileptic condition called Infantile Spasms. Though the root cause of the spasms appears to be a congenital defect in his brain as explained before as Cortical Dysplasia, the main goal right now of stopping the seizures can sometimes be achieved through medications. More on that later.

The medication that is considered the 'main' drug treatment attempt these days is something known as ACTH, a seriously serious steroid that is very, very dangerous for a kid his age to take. That is taken by injection also, not oral like the Prednisone. I'm jumping around here a bit I know...my writing skills are shit when it comes to keeping this junk clear in my head.

Anyway, the ACTH...dangerous and super duper expensive. To the tune of 100 grand for the dose cycle. So some insurance things had to be investigated while we are home from the hospital. The Prednisone was a random hope in hell...probably not likely to help but it can in some cases, so we were trying to get it sorted out with the insurance company even from the moment we came home just in case he needed to try to take the heavier stuff.

See the drug is SO fuckin' scarce because the condition is SO rare that a) the inhuman freaks that own the drug company that create it can actually live with themselves by charging 100K for it and b) if you don't have insurance approval or a check I guess, they will not ship the medicine to the hospital that requests it. Nice, huh?

Anyway, our insurance company is going to cover it...almost. Not all of it, there will be a co-pay of about 4500-5000 dollars, but another company, a group known as NORD, or the National Organization for Rare Disorders, has promised the drug company that they will cover the 5000 dollars on our behalf (assuming we meet with their criteria which I think we do). That letter of intent and the letter from our insurance company was enough for the drug company to release the medication. It is being shipped overnight to the Children's Hospital here in Columbus. Should arrive tomorrow by 10 AM.

I think Thursday we will have to re-admit Bennett to the hospital for a couple of days. The ACTH is injection-based, so they have to be sure we know how to administer the injections. There are serious, SERIOUS health risks to Bennett that we have to be trained to look for and we have to be trained to regularly check his vital signs and so on and so on. And they have to keep a close eye on him in the beginning of all this as well.

And the real kicker? This may not even work.

If they do not stop his seizures, and it isn't like the chances are awesome, then we would have to see if his congenital condition could be fixed via a brain surgery of some kind and surgical resection of his brain or removal of the damaged tissue, if that is even possible with his particular set of parameters.

This is my kid I am talking about here...can you even believe that? I am...I don't know...about as far gone as a guy can be without being gone emotionally...it is such an awful awful thing I wouldn't wish this on my worst enemy. I have cried more in the past 6 days than I have my whole life, and I had a ROUGH, rough life...those that know me well know what I am talking about. Even though I know he is in no pain, watching him have these spasms breaks my heart in ways I never dreamed possible.

Anyway, that's the latest. I am trying to be as hopeful and positive as I can be. So is Jen. Bree, my wife's brother's wife, helped out here for the last two days so that Jen and I could try to get some work done. My Mom arrived in town this afternoon, that will be a huge, HUGE help to me emotionally. You know who else has been the hugest help? My friend Mike Horn, former president of Palisades and actually my new current boss too (more on that MUCH later). I have known a lot of guys who talk the talk, but when it comes to crunch time they don't walk the walk. I have never known anyone who is more ready to do whatever it takes to help you when the chips are down than Mike. He is an exceptional guy...and if you end up reading this Mike well, then I'll thank you again even though every time I do you said don't sweat it. But lots of folks...Mark, Steve, Chris, Eddie, Kim, Travis, Jerry and so many others, thanks for all your support and encouragement. I need it now more than ever and appreciate it a TON, even if it is just quick notes in e-mail or a phone call. That is IMPORTANT to me and I need it.

Well, now at least until the re-admission to the hospital on Thursday (I think it will be then, I hope) the rest is just waiting and doing our best to make Bennett as comfortable as he can be and love him and Carter as much as we possibly can.

As always...I'll update more as I have it.


  1. wow ken I really can't stress how much I'm feeling for you and praying for you and your family...and man those drug companies just make me mad...that's insane...

  2. I won't rant about BigPharm, because we all know it and we've all heard it. If there's anything more we can do to help you out Ken, let us know. In the meantime, I'll keep you and your family in my thoughts and hopes.

  3. Ken, I'm so sorry to hear this. Definitely thinking about you, and hoping everything improves really soon for you guys.

  4. Ken, I have no idea what to say... I am so, so sorry Bennett is going through this. I'm not much for prayers, but the four of you are in my thoughts. If you need ANYTHING... I don't know, I can google medical terminology, write letters to Congress about health care reform. Truly, anything I can do, just say the word.

  5. My heart breaks for you guys. I can hear the anguish in your writing, Ken and I can empathize.

  6. Holy shit dude, that's heavy. I'm so sorry to hear that. Your situation is something I hopefully never, ever have to go through. Be strong, you'll get through this.

  7. Oh my gosh Ken! I had no idea until I came here tonight. I hurt for you in a father of a child way...but can't imagine how I would feel if some of my worst nightmares came true. I'm sorry your's seem to have at this point. You know I believe in prayer, and I will be putting you, your wife, Carter and Bennett on our church prayer list. Delma, Dora Diane and I will pray for you every evening. Love you man.

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