Joy. Fear. Anger. Helplessness. Joy?
On Monday we got the amazing news that the insurance company – Empire BC/BS – approved a higher dose of Jakafi (50 mg/day instead of 25 mg). This news was delivered via email by Dr. Yamashiro’s Nurse Practioner, Rebecca. She had just received word of the approval and she said that all I needed to do was call the special pharmacy associated with BC/BS and schedule delivery for the drug. The pharmacy was already going to arrange to deliver a 15-day supply but I needed to call and arrange delivery for the next 30 day supply (and beyond) once that first 15 day supply ran out.
Here’s what I posted on Facebook after getting this news:
Unbelievably awesome news! The insurance company approved the dose of Jakafi that Ana’s oncologist wants to start her on (this is double what’s on the label as approved for adults) – Ana will get a PET scan on Friday and start the drug then!! Hope shines…please let this treatment work.
I called the pharmacy that night and was delighted to get someone on the phone immediately (it was after 5 p.m.) – but they couldn’t access Ana’s information and had to transfer me to someone else. They put me on hold – the line went absolutely silent and twenty minutes later I hung up…baffled. I assumed it was because I called after hours.
I called the specialty pharmacy the next day in an optimistic mood -ready to schedule delivery and get the ball rolling. I spent an hour on the phone getting transferred five times until someone was finally able to access Ana’s information. My stress level ratcheted up a notch each time I was transferred – it didn’t help that the line kept going absolutely silent. As in – I’d be speaking with someone and they’d start responding and then they’d get cut off, but the line didn’t go dead. So I’d be standing there saying, “hello? can you hear me?” for five minutes until they came back and say, “I heard you the entire time, ma’am.” So the fifth person I spoke with told me that Ana’s doctor needed to call and get some kind of authorization (“but…her doctor told me I needed to call you – we already got approval…”) and after an hour I was grateful to hang up and call Rebecca so she could get this mysterious authorization.
Rebecca’s immediate reaction was, “But they told me yesterday that you needed to call to schedule the delivery.
Me: Well I just spent an hour getting transferred to five people and they insisted that you need to call to get this authorization.
Rebecca: Okay, I’ll call and try to get to the bottom of it…
Fast forward to later in the day – I got an email from Rebecca saying the reason that they couldn’t schedule the delivery was that I needed to go through Empire’s specialty pharmacy for this drug. That pharmacy is called Accredo. They told Rebecca that they could fill the prescription but it would take 2-3 days to process it and then either she or I would get a call to set up delivery. Okay…this is taking a long time for a life-saving treatment (I thought to myself) but who am I to complain? They’re going to fill it. Meanwhile, I have some time and I’ve never heard of this pharmacy, so I figured I’d Google them.
BIG FUCKING MISTAKE.
I found horrendous story after horrendous story about how horrible this pharmacy is at filling much-needed, life saving prescriptions. I mean, it’s so bad that I can only assume that they’re doing it on purpose because it’s probably much cheaper to…what? Not fill people’s prescriptions? How do they benefit from this? Do they have some agreement with BC/BS to delay shipment of much-needed drugs until patients die and don’t need them anymore? I’m pretty sure I sound like a crazy conspiracy theorist, but I defy anyone to read this blog post and not come to the same conclusion:
I also found a bunch of reviews on Google with horror story after horror story. I emailed Rebecca in a panic saying I wanted to use a different pharmacy. I called Empire today to see if that was even an option and after a painful EIGHTY MINUTES on the phone, was told that there is not, in fact, another option. Accredo is the ONLY specialty pharmacy that I can use with my plan – which is Child Health Plus. The BC/BS rep I spoke with literally said, “That can’t be right. That just doesn’t sound right – let me get a supervisor.”
So after spending close to three hours on the phone in two days (which I realize isn’t a lot of time when one considers the price of the drug and that at the very least it may save Ana a huge amount of pain and suffering and at the very most it will possibly save her life), I’m faced with the realization that I am at the complete and utter mercy of this pharmacy. I had to lie down after today’s phone call. I was utterly drained.
The PET scan is Friday – I don’t have the drug in hand and I don’t know if or when I’ll get it. Even if we get the initial dose in the next few days, will I have to spend hours on the phone every month to get the prescription? I sincerely hope not because I think that will finally be my undoing.
But maybe this is just me freaking out over nothing the way only I can do. Maybe the pharmacy will call and schedule the medication and we’ll have it on Friday or – at the latest – Monday and things will go smoothly after that. And then I’ll have moved full circle from joy to fear to anger to helplessness to joy again. But the fact that I am sitting here wondering about this at all says a lot – and I mean A LOT about the dysfunction of our healthcare system and the extra special stress that comes with having cancer (or, really, any sort of serious illness) in this country.
I currently exist in the purgatory of uncertainty – at the complete mercy of a system that’s burdened with red tape to the extent that I don’t know if I can get my child a potentially life saving medication in a timely manner. And time…well…time is critical right now. I’m a little silver ball bouncing around inside a pinball machine. I’m free falling. I’m seriously envisioning myself driving to Tennessee and storming the offices of Accredo so that I can…what? Demand they fill a prescription that’s already been approved? Will I have to do that every month? The irony is that we don’t even know if this drug will even work.
Joy. Fear. Anger. Helplessness. Joy…