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.