When James moved in with me at the age of 17, all of his anti-epileptic pills were covered by his medical insurance because he was under the responsibility of Child, Youth and Family Services (CYFS). This was great; all I had to do was get used to dealing with pills, their side effects and trips to the pharmacy. Everything was in place for one refill, then he turned 18. Now, should this have caused a problem? No, would not think so. Did it cause a problem? Yes.
In preparing for a two week trip out of province I placed a refill request for all of James’ pills at the local pharmacy expecting only to have to pick them up. What I did not expect was for $300 worth of pills to suddenly not be covered by any form of insurance. CRAP! James is nearly out of pills and he needs them, I had no other choice but to start paying for them out of my own pocket.
Understand the situation here. The day James turned 18 CYFS social workers arrived at my door and indicated that at this point James was to be considered more like a roommate, and I was more like his guardian than a foster parent as such. Okay, this is fine, because James really was not ready to be living on his own anyway, and CYFS had no place for him to go if he left my place. The social worker never once indicated that I would end up having to pay for all of his pills.
One week later I received, in the mail, a stack of paperwork that would later allow James to get medical coverage and some income support from the provincial government. Unfortunately there were a lot of things that needed to be in place before it could be filled out (ie. Opening a bank account, ID, etc.), and 2 days before leaving the province there just was not time to get it all done. And it would not get done until the end of September, and certainly not without a fight with one government agency because CYFS screwed up a month before James entered my care…. But that is a story for another time.
Anyway, back on topic, shocked as I was that I had to fork out $300 right before going on vacation, I did it. James had ZERO money coming in and moved in with only a back of scruffy clothes, so he certainly could not pay for them. So, logically, I began my journey of paying for his meds; it wasn’t like I could see him go without – not that they did any good most of the time.
As the weeks went by, we returned from vacation and more pills had to be ordered, but some of that aforementioned paperwork also got submitted. Just before I was about to go broke or have a stroke from the stress of paying $550 per month for pills some of them started to be covered by our provincial prescription drug program (NLPDP). This was a huge relieve except for one thing – the trileptal prescription was not covered and I would need special authorization. Okay, fine, I spoke with my mom (a nurse) who said this is normal for some of the more expensive pills. The NLPDP people told me that all I would have to do is get the doctor to complete the paperwork and it would get approved and I could get completely reimbursed for all meds. Great!
After finding out what I had to do from the NLPDP (who I might are a pain in the ass to deal with, especially when you have to call them 10 times in a month and still get no satisfaction), I visited our local clinic here in Conne River and the nurse arranged to have the form filled out, but had to get James’ exact prescription from the neurologist. This was at the end of November. I assumed everything would be in place. I called the NLPDP a number of times only to find out at the beginning of January the form was never received by the neurologist’s office in the first place.
At this point I finally just did the paperwork myself. I confirmed that everything was send off by the doctor and received by the NLPDP – and then I waited some more. In late of February I received a letter unclearly stating that eight 150 mg trileptal tablets that James has been taking forever would NOT be covered by the NLPDP because it was cheaper to pay for two 600 mg tablets. The 600 mg tablets were authorized since last March.
Of course, I called, to see what the problem was. Even after an explanation of how James cannot take 600 mg at once because of the side effects that prevent him from functioning normally without falling asleep, they would not budge. The only way to get my money back – now totalling over $2000 – was to get approval from the neurologist that he NEEDED the 150 mg tablets.
I was pissed! There was a good chance that I would not get my money back, and I was not getting any satisfaction. I had just been laid off from work; this was NOT what I needed! Plus I had called the NLPDP many times before; even had them list all the meds that were covered, but they never once told me 4 months prior that they had already authorized 600 mg tablets.
I met with the nurse whom we’d been talking to a number of times regarding James’ seizures. To scorned me for changing the way James’ took his meds. Apparently I was not supposed to use my common sense, take suggestions from epilepsy websites, and make 2 doses in 4 doses so that he could stay awake and make it through a school day without falling asleep. He would make the referral for me, but it was up to me to convince the neurologist that what I was doing was working, although it was believed that I would be told to leave the doses alone… Anyways, I was finally able to get my appointed a month later with the neurologist.
Before meeting with the doctor, I was determined to be prepared in every way. We started recording seizures again, made a list of questions, and brought along what the NLPDP told me about needing doctor’s authorization. I explained to the doctor that I have been separating doses to eliminate side effects, and it has been working, and for the most part the seizures were less than or equal to what they were before separating doses. To my surprise the doctor was glad I had done that, and told me to keep doing it. What’s more, he agreed to write a letter to the NLPDP telling them James needed the 150 mg tablets that he’s been taking, and not 600 mg tablets
Today I made another call to the NLPDP to check on the status of the Keppra authorization, but also asked about the trileptal. I was told that the 150 mg tablets were FINALLY covered and back-dated. I can finally submit all of my receipts to get my full re-imbursement that was promised last fall.
This news alone made my day. I am crossing my fingers the Keppra will be good, and covered by next week.
After a 7 month battle with the government, I Scott, have come out on top. Sometimes we just have to be patient, because the system does work.