By Brenda McFarlane / OB Rag
It’s happened again. I have been denied coverage for Modafinil yet again, this time by the exact same company who has already approved it.
I’ve been on a prescription medication that treats my Ideopathic Hypersomnia for several years now. It’s an extremely expensive drug, even the generic form can be more than a $1000 a month. I have been diagnosed by a esteemed sleep doctor in San Diego and he confirms that the drug is both medically necessary and that no effective (and non-narcotic) substitute exists.
Without the drug I suffer from sometimes overwhelming sleepiness. Without it I get a band of sleep deprived headaches, driving may be either impossible or require pulling over to take naps, even after 5 minutes on the road. I grew up with this condition – undiagnosed – and lost years of my life to sleepiness. Smoking cigarettes or eating sugar were the two things I could rely on to help stay awake especially to drive.
I am writing this as I wait on hold for the next patient care advocate with Express Scripts, I am at 43 minutes.
I have grown to believe that this denial is purposeful bureaucratic complexity nurtured to thwart as many people as possible from getting expensive prescribed drugs. I believe this ineptitude within the Health Insurance System, the Pharmacies and the Doctor’s office is actually orchestrated on purpose by Insurance companies to save them money.
Creating a system engineered to make it difficult for the ordinary person to get their prescription paid for is as simple as bringing together enough of the following components; employees without initiative, lack of clear information, information overload, confusion, poor communication lines, information hidden underneath layers of other information, disconcerting medical terms, and allowing the accidental and incorrect information dispersal. .
I am presently at 58 minutes in my time-consuming run around to get the information I need to get my medication. I can’t imagine how I would manage to fight through this labrynthian system if I had a job, had difficulty hearing, had an impairment or, God forbid, was sick or in pain!
It is hard to imagine the CEO and high level directors are unaware that their system keeps their insured from receiving their covered medication.
What caused my present inability to get my prescription filled is that I changed my health insurance from my husband’s Anthem Blue Cross coverage to a different Anthem Blue Cross program. This seems to have given Anthem Blue Cross an excuse to once again deny my medically necessary prescription despite that the drug is listed in a formularly published on the web dated October 2013 (which I checked before signing up) and they have already put me through the very same rigamoral 2 years ago, meaning that they already have everything they need to prove that there is not another form of drug that can help me and that I have the exact diagnosis that this drug is made to treat.
Still, the system has found a way to deny coverage and I have no recourse to go through a series of hoops. My phone just ran at of battery power at 1 hour 13 minutes so I changed phones…
On Monday, The first hoop was my pharmacist at Rite Aid, a cold and disinterested young lady if ever I met one. She was put out when I told her she needed to call my insurance plan after she told me my medication wasn’t covered. She informed me it would “take a long time to get through”. Yeah, well, sorry to make you do your job was what I thought but I kept it to myself.
I returned in an hour and she said that my drug is not on their formulary and it is a closed formulary. I waited for any further information, she had none. Getting more information from her was like ringing water of a dry towel. She did manage told me I could pay for the medication myself but it was expensive (did I mention it cost more than a 1000 a month?).
Next I called and emailed my Doctor, they are notoriously difficult to reach, only in the office from Monday to Thursday, 1 hour lunches and they don’t answer the phone. Left a message.
Called the number on the denial note the pharmacist gave me. Went around and around, three different operators put me through to themselves. That took about 45 minutes. All the information I got was I needed to get my Doctor to call them.
Doctor’s office didn’t call me back or email me any response on Monday, No drug for me, sleepy.
On Tuesday afternoon, I finally heard from my Doctor’s Assistant, she told me she was waiting on-line with the same people I called the day before. She’d been waiting more than an hour. She wanted to know if I had another number to call. I didn’t. Again no modafinil, sleepy. Went to bed at 10:00 pm
Wednesday: Awake at 8, still sleepy. At 8:30 on the telephone with Express Scripts. It is now 10:20am and I’ve talked to Sierra and am waiting to talk to a Supervisor.
Sierra told me that the Doctor’s Office called and initiated a Coverage Review.
The Coverage Review went to the Medical Director. It will take 72 hours for a response.
The response will go directly to my Doctor’s office, not to me. I will be sent a letter.
I’ve learned that I can’t rely on my Doctor to contact me and they are closed on Fridays. So I can either wait for the letter or try to get my friendly neighborhood pharmacy to call for me to see if I have been approved.
If I don’t get approved, well then I can appeal.
Talked with Supervisor after about a 40 minute wait. The conclusion to this is that I will continue to be denied a medically necessary drug because of a inexcusably complex and inefficient bureaucracy, effectively saving the insurance company hundreds of dollars.
So, do they have any reason to improve their system if it saves money? I don’t think so.
Brenda McFarlane says
Update: I wrote this on Tuesday. It is now Friday. I got my card today! A cause for celebration? Nope. I went to the pharmacy and got the same cold-as-an-iceberg and complacent pharmacist, let’s call her Missy. This time she said, in her flat I-don’t-give-a-damn-about-your-troubles voice , “You aren’t covered. You’ll have to call them,” I gave her a snapshot of the situation. Missy looked at me blankly and waved my card in the air, “You’re not covered.” What was she talking about? “I mean”, Missy huffed impatiently, flipping my card back to me, “you are not in the system at all” It didn’t matter to her that I was in the system on Tuesday and by Friday I wasn’t. Or that my brand new card proved my coverage. “There’s nothing I can do” she repeated, shrugging with disdain. I couldn’t help thinking that even if there was something she could do, she wouldn’t be bothered. Of course, Missy isn’t the real problem. The problem is, I am on the phone again, at home trying to find out what is going on. I am losing time at work. I’m suffering without my medication. I am unable to reach anyone, feeling helpless and angry and frightened. I am supposed to fly out of state on Sunday to visit my parents for 10 days. Wondering if I need to cancel my plane ticket so I can get my medication. Am I alone in thinking this is outrageous? This is a person’s life and health this insurance company is treating with such inefficiency. They’ve accepted my money. How is it not illegal to take someone’s money for coverage and make them go through hoops to get it?
I feel for you Brenda.
I have been taking Modafinil on and off (if I can afford it) for many years to combat chronic fatigue. Insurance companies hate to cover it, and will fight tooth and nail to avoid paying for it because it is so expensive. I don’t even bother any more. But why is it so expensive? Modafinil is not difficult to synthesize. It has not been under patent protection since 2010. It is Schedule IV, which is relatively low on the scale of controlled substances. Yet generics only appeared two years ago, and when they did, the generics were just as expensive as the brand name.
Modafinil is expensive because it is effective. Very effective. The pharmaceutical companies know that they can charge whatever they want for it and people will pay. The deals that Cephalon (now owned by Teva) has made with the generic manufacturers to keep prices high are the most incredibly asinine and pathetic manifestations of greed since the Iraq invasion. The FTC doesn’t seem to be making any headway against these clowns, but the first time I hear about a class action for price fixing, I will be on that boat.
For what it is worth, the price is coming down. I just picked up 30 x 200mg for $231 at Costco. It’s still a car payment, but 4 months ago those pills were $700.
Brenda McFarlane says
Thanks so much for your comment, I’m glad I am not alone in this. Also, good to know about Costco although money is so tight, that would be beyond me right now. I’ll let you know how the fight turns out… Class action for price fixing? I like it.
Jeri Koshen says
Is there any other med that might help? I have been on Adderal and there is no change. I’m still sleeping my life away. What about driving?