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Insurance Costs For Sleep Study?


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#1 Krystina

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Posted 05 September 2009 - 11:53 PM

Hi there-

I was recently diagnosed with narcolepsy by a wonderful sleep specialist in my area. I've always been the "sleepy" child in our family, and since I've been out of college and in the "real world" where naps every three hours aren't reasonable, I started falling asleep at the wheel on a daily basis, plus other classic symptoms such as hypnagogic hallucinations and mild cataplexy. I decided to see my family doctor who referred me to a specialist, and after a really long consultation, he said that it seemed like a classic case of narcolepsy.

He said that in order to get insurance to pay for my medication (currently Provigil samples, which kind of work), I'd have to have the sleep study at night and the one that goes on to the next day. I gave the doctor's office my insurance information, and they contacted me a week later to say that my insurance provider would pay 100% of the study, but that this was not a promise of payment. I went ahead with the study, and received an email from my insurance provider saying that I had an explanation of benefits waiting for me in my inbox.

I went to check it out, and am quite shocked and worried by what I saw. It said that the claim had been processed, and that I owed the full $3700 amount for the study. Here's what it says:

"Based On The Information Provided, This Service Is Unproven For The Diagnosis Billed And Is Not Covered. No Benefits Are Payable For This Expense. For This Service To Be Considered For Coverage, Scientific Evidence Must Be Submitted, That Meets The Standards Described In Your Benefit Plan Language, That Demonstrates The Safety And Effectiveness Of This Service For Your Particular Condition."

What the heck does this mean? Does this mean that the doctor has decided I don't have narcolepsy after all, and now I can't claim for the study? I'm really upset. It's not that I can't pay for the study (I'm not eager to, obviously, but I can take care of it). I don't know if you have to have a letter from your doctor that explains your diagnosis and then file an appeal from your insurance company or what. Is that the process? If it turns out I don't have N, then it just seems a bit unfair. How do you know if you have it unless you have the test?

I'm scared and upset because I've started taking Provigil and have felt the haze lift on my life a bit. I've felt awake and optimistic, even though it's zapped my apetite left me unable to go to the gym (which is sad, but I'm sure I'll get better with food at some point. Am trying hard as there isn't much left to lose before I become too thin). I don't just have to wake up, drag through work, fall asleep on the way home and hit the couch for a 3 hour nap. Weekends were taken up by sleep. I've been addicted to sweets and pastries, especially after naps, because they have always helped me feel up. I've been out with my husband shopping and having fun, and would feel this desperate urge to go home and sleep. I've slept in parking lots while my friends shopped at outlet malls and don't even know what most of Texas looks like from roadtrips as I'm usually out cold. The hallucinations I've had for years are terrifying and entirely too realistic. I'm sure that someone is breaking in to the house and I physically can't move to alert my husband. I was happy because I thought that I finally found the solution, and now I'm worried that maybe it wasn't that after all and that I'm just lazy and self indulgent. I am taking the provigil a little before it's time to get up, and I felt so good that I was making Andrew some breakfast and then fixing his lunch for him, such a small thing, but an amazing feeling to take care of him because he has always carried the load for us. He does our laundry and cooks our dinner, feeds our dogs and puts me to bed when I've fallen asleep on the couch. He never complains, even before I was diagnosed, he never complained about me being too sleepy. I was really looking forward to doing more of that stuff to be the wife that he deserves. Maybe I'm reading too much in to it, but this is the first thing that made sense, and I'm scared that maybe the proof isn't there.

So what does this mean? Anyone have any experience with something similar? I have United Healthcare.

Thanks in advance for your response. I've read a lot of these threads, and you guys are truly amazing people for what you go through every day.

Krystina

#2 Nyx

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Posted 06 September 2009 - 02:02 AM

Wow. That's absolutely preposterous. Did the insurance company not get the narcolepsy suspicion and subsequent diagnosis from your doctor? Regardless, I'd call the doctor's office immediately and read that to them. They've probably had experience with this before, and may be able to resolve the problem simply by providing additional information regarding the test and results directly to the insurance company. Because as far as I know, that IS the diagnostic standard test for narcolepsy! Hopefully the doctor's office will be able to help you this figure out, but if not, I wouldn't give up there. I would also call the insurance company and ask them what the accepted test would be for narcolepsy under your plan, and what other "scientific evidence" they require. Then again, perhaps this is something peculiar to your plan. Hopefully someone else will have experienced this and can post more advice.

#3 estilrose

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Posted 06 September 2009 - 03:54 PM

I received the same EOB definition on parts of my sleep study also. They covered all of the charges from the sleep center but turned down 2 from the doctor saying the same thing as your EOB. However, without anything from me, a few weeks later I received another email notification of an EOB. When I checked it out, those 2 same charges were shown again and had been covered.

I think it's something to do with how it was billed to the insurance company. Wrong wording etc. Once the doctor got notification it was rejected, they resubmitted them and things were handled. I wouldn't panic just yet. If you haven't received an actual bill, the doctor's office and insurance company are still working the process. I would call the doctor's office and let them know you're a little worried about the charges not being covered. Bring it to their attention.


ETA-I also have United Healthcare. Could be the same wording problem.

#4 Krystina

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Posted 08 September 2009 - 10:43 PM

Thank you both very much for your response. Another quick question-- how much does Provigil generally cost? Went to pick up my script today and was told it was $194 for 60 pills! Thought that there was a mistake and asked for the price without insurance and was told it was $790 without insurance!! Does this sound about right?

#5 Nyx

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Posted 09 September 2009 - 01:07 AM

Thank you both very much for your response. Another quick question-- how much does Provigil generally cost? Went to pick up my script today and was told it was $194 for 60 pills! Thought that there was a mistake and asked for the price without insurance and was told it was $790 without insurance!! Does this sound about right?


Alas, yes. Unless you're lucky enough to have a great prescription plan. Although I would hope your doctor told you already, it's actually cheaper to buy one 200 mg provigil pill than two 100 mg provigil pills, so definitely be sure to get the 200 mg pills (you can of course split them if you need to).

Finally, if you can get nuvigil, that may be a better idea. Supposedly they've formulated it to cause less side effects than provigil, and to be more potent, so you end up needing less than you'd need of provigil. Also, they've been jacking up the price of provigil because they're going to lose their patent on it, so they're trying to encourage everyone to switch to nuvigil. They want everyone happily taking nuvigil when their provigil patent expires (in 2012 I think) and provigil gets cheap due to competition from generics.

#6 estilrose

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Posted 12 September 2009 - 04:45 PM

Provigil didn't work for me and I was only able to use the samples the doctor gave me because the insurance company wouldn't pay for it. I hadn't yet tried Ritalin and that's the insurance companies first choice. Once I did try Ritalin and found it didn't work either, my doc gave me samples of and a prescription for Nuvigil. Luckily the insurance company was covering that. Cash price would have been over $550 for 30 pills! My insurance brought that to $45 and with the savings card from the drug manufacturers I only had to pay $10!

#7 Nyx

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Posted 12 September 2009 - 05:25 PM

Provigil didn't work for me and I was only able to use the samples the doctor gave me because the insurance company wouldn't pay for it. I hadn't yet tried Ritalin and that's the insurance companies first choice. Once I did try Ritalin and found it didn't work either, my doc gave me samples of and a prescription for Nuvigil. Luckily the insurance company was covering that. Cash price would have been over $550 for 30 pills! My insurance brought that to $45 and with the savings card from the drug manufacturers I only had to pay $10!


If you don't mind, could you list your dose, side effects, and experience with both provigil and nuvigil? When you say provigil didn't work for you, what did that mean exactly? Side effects? Same EDS even after increasing the dose? As for ritalin, what did you mean when you tried it and it didn't work either?

#8 estilrose

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Posted 13 September 2009 - 12:51 AM

I didn't notice any difference at all in my EDS with either the Provigil or Ritalin. Can't remember what the dose was on Provigil (it was the sample pack), Ritalin was 10mg. The only effect the Ritalin had was giving me migraines.

The doc gave me 2 weeks worth of Nuvigil samples, 250mg. I noticed a difference immediately. The first day I was very jittery and the 2nd less so but was really "high". The first 3 nights I couldn't go to sleep at all! I slept a total of maybe 9 hours in 3 days. I decided to give it the full 2 week trial and I settled into it better. I've now been taking it for a month and I can definitely tell a difference. I'm not nodding off at the desk or bathroom anymore and have been able to start driving again for short distances. By Thursday/Friday I'm sleepy again around 4 or 5pm but the rest of the week I'm good. I haven't been taking it on the weekends because I haven't been strong enough to adjust to the same schedule everyday, and I am super aware of the effect it has on me. I've always been this way (only diagnosed now because of the driving danger) but on the weekends when I can't stay awake longer than an hour or two I'm amazed I've been able to function at all. I'm hoping the Nuvigil continues to work, that's part of the reason why I don't take it on the weekend so I don't get numb to it.

I haven't talked to my doc about taking anything at night for better sleep. Like I said, I've always had "issues" but was just diagnosed. I never realized it was odd that I dreamt so much, so quickly. I never thought I didn't sleep well. I've been what I considered a deep sleeper. I wake up in the exact position I fell asleep in. Now, after the diagnosis I've been reading and realizing that I'm probably not getting the right kind of sleep.

I need to talk to the doc a little more in detail about all of it.

#9 Krystina

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Posted 16 September 2009 - 07:19 PM

I didn't notice any difference at all in my EDS with either the Provigil or Ritalin. Can't remember what the dose was on Provigil (it was the sample pack), Ritalin was 10mg. The only effect the Ritalin had was giving me migraines.

The doc gave me 2 weeks worth of Nuvigil samples, 250mg. I noticed a difference immediately. The first day I was very jittery and the 2nd less so but was really "high". The first 3 nights I couldn't go to sleep at all! I slept a total of maybe 9 hours in 3 days. I decided to give it the full 2 week trial and I settled into it better. I've now been taking it for a month and I can definitely tell a difference. I'm not nodding off at the desk or bathroom anymore and have been able to start driving again for short distances. By Thursday/Friday I'm sleepy again around 4 or 5pm but the rest of the week I'm good. I haven't been taking it on the weekends because I haven't been strong enough to adjust to the same schedule everyday, and I am super aware of the effect it has on me. I've always been this way (only diagnosed now because of the driving danger) but on the weekends when I can't stay awake longer than an hour or two I'm amazed I've been able to function at all. I'm hoping the Nuvigil continues to work, that's part of the reason why I don't take it on the weekend so I don't get numb to it.

I haven't talked to my doc about taking anything at night for better sleep. Like I said, I've always had "issues" but was just diagnosed. I never realized it was odd that I dreamt so much, so quickly. I never thought I didn't sleep well. I've been what I considered a deep sleeper. I wake up in the exact position I fell asleep in. Now, after the diagnosis I've been reading and realizing that I'm probably not getting the right kind of sleep.

I need to talk to the doc a little more in detail about all of it.


This was super helpful, both of you! Thanks so much for taking the time out to answer all of my newbie questions :) I got the results of my test yesterday, and sure enough, Narcolepsy. I have trouble going to bed now as well, EstileRose, but I think it's probably a little initial high. Thurs/Fridays are the same way with me too. I tried to stay off Provigil this weekend, but it just about wiped me out by Sunday. I struggled like crazy to function on Monday, but since I've been back on the Provigil, it's been better. And just as you, I never really thought it was weird that I dream a lot. I just thought it was how I was. So much work to do and so many questions for the doctor. Good luck with your stuff too, let me know what you find out.

What savings card did you get from the manufacturer? Problem with me is that on paper, I make way too much to ever be considered for any kind of financial support. In reality, I'm supporting my grandparents, as well as paying off my student loads (yadda, yadda, yadda :) )

#10 estilrose

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Posted 16 September 2009 - 08:36 PM

The savings card wasn't something I applied for. I believe it's provided by the manufacturer as an incentive. If you go to the Nuvigil website you can find a link to get one. If your doctor prescribes it, I'm sure he'll just send it to you without asking. Mine did.

This past Sunday I was practically comatose all day! I was in and out of it every 20 minutes or so all day. I should keep taking it but I'm worried about becoming too adjusted to it.