You wanna talk about mental health issues in CF? Try this on for size. I just got home from my local pharmacy. Its the FIFTH time I've been there in 3 days trying to fill one prescription. Here's the back story.
At the end of the year we got a letter from our dietitian sharing news of a great program offered by the manufacturer of one of the medications Drew takes. They are willing to cover up to $1750 per month toward the cost of the medication for folks with a high deductible insurance plan, a group which we would be part of starting in January. The really cool thing was that this medication, through our insurance only cost $800/mo, so it would be covered completely with a $5 co-pay from me, and the manufacturer would therefore pay $2400 ($800/mo for a 3 month supply = $2400) toward Drew's deductible, getting him incredibly close to reaching his out of pocket max, great news for a chronic illness kid who has incredible expenses. With a high deductible plan, we pay everything until he reaches his deductible, and then co-insurance kicks in, or something like that, so if someone other than us is helping us to reach that deductible, that's fantastic news and savings. You get the idea.
So I got a prescription from his doctor when we were there last month for a 3mo. supply of this particular medication and my plan was to take it to the local pharmacy on Jan.1 before any other medical crap happened that we'd be solely responsible for paying for so that this drug manufacturer could get him close to meeting his deductible. Here's the timeline of events that followed:
1/1/16 - Drop off prescription at local pharmacy and present our new insurance & the manufacturer discount card
1/2/16 - Got a call that the insurance information they had was invalid, so I returned and re-presented the same insurance card and manufacturer discount card and asked them to run it while I was there. They did, and told me that the medication wasn't in stock but that they could have it by Monday (1/4).
1/4/16 - Received a text message from the pharmacy that the medication was in, so I returned to the pharmacy and was told that my co-pay was $600. I asked them if they'd run the manufacturer co-pay card and they said yes but it only took $1800 off the 3mo supply. I told them I needed to talk to the manufacturer or our dietician and left without the medication. So I emailed her and she confirmed the $1750 with the rep and then called the pharmacy herself and they told her (the same pharmacy that I had left 3min prior) that it looked like my cost when they ran it through the system would be $5. No idea what I had done or said wrong but happy that the problem seemed to be fixed.
1/5 - Stopped back at the pharmacy to retrieve the medication and pay my $5 and was told that not enough of the medication had been ordered yesterday so more would be coming on the truck this afternoon, to stop back after 2.
Later that same day, after 2 - Stopped back at the pharmacy to get the medication and pay my $5 on my way to pick the kids up from school, and was told that my co-pay was $600. WHA? How did we revert to the $600? I don't have time to discuss because I've gotta get the kids so I said I'd swing by tonight.
30min ago - I stopped back at the pharmacy to try to figure out what was going on and the pharmacist (or the pharmacy insurance tech, lovely woman) explained that someone must have entered it into the system the wrong way, despite the fact that it showed the $5 outcome I had been expecting (?) and that the co-pay card was only taking off the $1750 once, not three times for the three month supply, and there wasn't really anything they could do about it. As they saw it I had 2 options: a) pay the $600 and be grateful for the contribution the manufacturer was making toward the medication so that I didn't owe $2400, or b) get a prescription from our doctor for a 1mo supply, call our prescriptions benefits plan and ask for an override on their rule that we must obtain a 3mo supply, and, if approved for the override, enjoy a 1mo supply of the medication for $5 every month. The issue with this (there are actually many) is that only $800 is being paid toward his high deductible, not $2400 defeating the whole purpose of this plan in the first place.
See I'm not mad at any ONE person. I'm not even really actually as mad as I would typically be in these situations because its not the fault of one person. Its a failure of the system. This patient assistance program was designed to help the patients and families who have situations similar to ours - chronic illness, high medical expense - and it seems to be incompatible with our insurance plan, something also designed (though I'd argue this one big time) to help people manage medical expense. The pharmacy hasn't offered much help for where we go from here. I'll email his dietician again to see if she can help figure out what's going on. This is taking HOURS of my life. I've shared in many previous posts (like this, and this, and this) how I spend many of my days. This shit has got to be fixed. The system is failing the people that it is trying to support. I've most certainly been identified "non-compliant" in the "pharmacy refill tracking" system the CFF uses for capturing medication non-adherence (my opinions on that will be saved for future conversation or comment), but I assure you that this isn't a failure on my end. Tell me what I could have/should have done differently? How much more time should I commit to this? Did I mention that this is one of 12 medications that he takes on a daily basis? Wouldn't it be great if they all had a manufacturer assistance program that worked like this....SAID NO ONE EVER. What would be great is if I called in the information, it all ran through smoothly, my life was made easier and we all lived happily ever after. (as a sidebar I do believe that this is still possilble in healthcare and its what I work on tirelessly trying to achieve). I will keep going back and calling and emailing until we figure it out (or don't) and will be grateful for whatever savings we are able to see, though no one will understand the strain that all of this time and these calls and trips has put on my life.
It should be no surprise that I am at my wits end today, with this FIFTH TRIP to the pharmacy, still no medication. Another kid came home sick from school so I'm trying to pay attention to him while I worry about what will happen if Drew catches it too. I'm trying to help run a girlscout meeting because my daughter loves girlscouts and if there was no one willing to lead then there was no troop, and she deserves my time and attention just as much as any of my other kids. The current state of our house could best be described as "there appears to have been a struggle" as we wade through our own filth of a small remodel project. Because we are people too. In fact, we are people first. We are more than just CF and medication reordering and treatment administering and appointment scheduling. The only crazy you're allowed to accuse me of being is crazy in love with this family and this life and doing the best damn job that I can do. Stressed out? Anxious? Of course. But find me someone in 2016 who is not. I assure you that many a person, CF mama or otherwise, would have long given up on this quest for savings or flown completely off the handle, both perfectly acceptable responses to this nonsense. I'll figure it out, but i'm worried about the people who can't, Lets find a way to make the system work better for the people who desperately need it to work.