a picture worth 60K

Because not everyone who follow’s Trevor’s Blog has a child with Infantile Spasms…and because a friend recently inquired…

I thought for educational purposes it could be interesting for the public at large to see what exactly I’m speaking of when I rage on about Trevy’s ACTH.

During round one of ACTH the vials were shipped in padded envelopes…and we actually had to hunt down a medical supply store to find the syringes/needles/alcohol swabs/and all things injection related. It was quite a complicated (stressful) process. Compounding the stress our insurance would only agree to ship one vial at a time. Which led to the inevitable outcome of PharmaCare forgetting to process an order on the right day of the AIG set timeline. Fortunately I called immediately upon non-delivery & we were able to sign for the vial in the nick of time for his next scheduled injection.

Although the case could be made that when one (or insurance) is spending $30,000 per vial…they should not have to play Quality Control with shipment of said medication. Orders should be processed error free!

And yet there are. Errors. In fact, legend has it that a family on the West Coast was accidentally shipped a double order of their child’s entire course of ACTH. The pharmacy refused to accept the duplicate order back & reimburse the family. Their insurance also refused to pay for doubles. And the family was on the line for the equivalent of a house! Not only was the wind knocked out of them by the diagnosis of IS…they also had to pick themselves up and fight to right a wrong they had not committed. A simple error so outrageously expensive that no one wanted to be held accountable.

But I digress…

Our round two of ACTH is being serviced by CuraScript.

I certainly prefer getting all of our injection paraphernalia shipped in one big Styrofoam box as shown above.

1st from the top – syringes

2nd from the top – needle heads which attach to the syringes

3rd from the top – alcohol swabs

4th & 5th from the top – two (of a 5 vial course) vials of ACTH

That smaller-than-a-bottle-of-nail-polish-vial is what our insurance is dispensing $30,000 a pop to give Trevy a chance at a normal life. Remember ACTH does not cure Infantile Spasms. And the majority of children who gain seizure freedom…either relapse like Trevor…or go on to suffer from other (often multiple) seizure types.

As it stands right now…round two is not bringing us the same success we celebrated with round one.

And as fate would have it CuraScript also goofed on our order. And I enjoyed a complimentary stress headache for much of the tail end of last week as I attempted to correct their error! It became my obligation to persuade that we had been shipped only enough ACTH to make it through Saturday…not until Tuesday as they had scheduled in their system. Ironically…even though Medicaid had already approved the whole course…there would be no shipping of Trevy’s next round until there was adequate assurance that they would indeed be receiving payment for the next two vials!

But I suppose I complain too much?


After all…as soon as she double checked with her manager…who double checked payment arrangements with my insurance company…after I had spent an entire day double checking all of the above…they did process the order. And I signed for it the next day.


12 thoughts on “a picture worth 60K

  1. Life dictated by Questcor is NO life for anyone!I am sorry Trevy’s not responding well. Has there been talk of cutting the course short and trying Vig? Or something else?I know, I know they always say wait it out, but at $30K a vial, I would be too impatient!

  2. wow! i have no idea how u keep all of that straight on top of running a household with 3 little ones! i’m confused just reading about it!again – kudos to u for being such an advocate for ur son!xoxox,sharon

  3. Jen…we were already doing a short course…so we start weaning this week. And our neuro has already started to ball rolling for Vig. That's definately the next direction we're going. I'm praying that it gives us a miracle…because as brave as I try & sound…the thought of Trevy having surgery sends shivers to my soul! Mama…lol…it's really not that complicated. It just stinks havin' to shoot your own kid up! But J is quite the pro…and today was the first day with only grumbling & no screaming! Molli…we've had a good expirience with CuraScript…except for the one shipping error. But the representative is very nice. And we'll take all the prayers we can get! …danielle

  4. Wow! I can’t believe that. So much rigamarole! We went through Children’s Home Care. They delivered every Wednesday. We got everything through them. Biohazard container, needles, syringes, alcohol swabs, etc. The only thing they didn’t give us was bandaids. We used the Hello Kitty and Disney ones. It made us feel better to cover the boo boo with something cute. Also, it was an X marks the spot of the last injection. Isn’t it funny how you get a whole ritual down when you have to do it?Sorry that it isn’t going as well this time, but you never know. Maybe it’s doing something in his little brain to make the next treatment more successful.

  5. What a headache! I'm sorry it's not working as well this time. We went to dr. Neuro yesterday….uggghhhh. It's a never ending battle with these kids isn't it? It's a good thing they are so darn cute and lovable! Vigabatrin might be one of our next options too. I'm just so afraid of the possible visual side effects. It's pretty bad when the DR tells you that your 2 year old child has already been through most of the meds out there. when will it end???? hang in there little Trevy & mommy!

  6. Looks a lot different from our ACTH days. We picked up the FULL course at the pharmacy! Along with all our neeedles etc. Ahhhh…the good ole days! Back when it was ONLY 1,500 a vial!

  7. Monica- Vig really shouldn’t be feared. The “best part” is you generally know within a month or two if it’s going to work. If it doesn’t work, then viusal issues aren’t even a concern. IF, IF there are going to be visual issues it’s after high dosages and long term treatment. That said, my Austin was on it for over 4 years. He had ERgs every 6 months or so and has never had any problems.Also, the side effects are minimal. The worst part is the disturbed sleep. He was a very light, restless sleeper the entire time he was on it.Good luck, please ask any questions!

  8. Shanna…do you ever think it's weird how much we have in common? The hospital gave us bandaids for Trevy…guess what was on them? Hello Kitty! lol We figured he was young enough to handle the pink-a-lish (as Bristel calls it)Marrisa's daddy…so you're to blame for that silly title sticking in my head! I typed like 40 different ones in & deleted them! But that's it…I'm changing it! I can't stand cyber-stealing! *smile*Monica…I'm with you…we're lucky & they're lucky that they are so darn cute! Sounds like our boys are going to be Vig buddies! B…you had it SO easy! lol

  9. I want to cry for you right now…the pics of the ACTH bring memories for me..suuuuch a hard time..I am too struggling with madies seizures….seems like the dawn of time we began this huh?Lots of family and love gets you thru…keep us postedJamie. madisons mommy.

  10. Jamie…we start weaning tomorrow! I can’t wait to be done with this drug! It’s harder to push the needle in when your baby is still having seizures everyday…Thanks for the love though! ((((((((hugs)))))))))…danielle

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s