Score one for the little guy...

pedalinbob

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the poetic justice is wonderful! this is kinda long, but the ending is worth it.

i was on a medication (Provigil), which was covered by my insurer. this med worked best for my condition.
my employer, without the consent of the RN's in my union, changed insurer.

the new insurer denied coverage for my med. they stated that i did not fall under the listed uses for the med.
the cost of this med is $200/month!

i was furious.
i gave the union and the insurer hell.

the insurer agreed to cover a less expensive alternate med that was $76/month (Metadate CD). this alternate med had been tried in the past, and always gave me a headache (not controlled by analgesia) and moderate loss of appetite.

i took this alternate med intermittently over the last year, and simply dealt with the side effects as best as i could.

well...i tried to refill my Metadate Rx last week--and was suddenly DENIED coverage!!!
i purchased the med out-of-pocket, and had my doc re-submit for prior authorization. it was believed that the insurer would capitulate, and i would be reimbursed my cost.

today, i received a denial stating "client criteria only covers medication for diagnosis of ADD, ADHD or narcolepsy".
i do not fall under this criteria.
until this time, i was resigned to accepting the use of Metadate...and now niether Metadate nor Provigil are covered.

desperate, i decided to contact the FDA.

well, well, well! the FDA has, as of early February, broadened the listed use for the original, and more expensive med, Provigil...i should now fall under the umbrella of listed uses!

Metadate: $76/month
Provigil: $200/month

the look on the (a-hole) insurers faces when they realilze that they burned themselves in an attempt to burn me...
PRICELESS!!!!!!!!!!

Bob
 

pedalinbob

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idiopathic hypersomnia.

i sleep very poorly for unknown reasons.
the treatment focuses on making me more awake (stimulants), rather than trying to force sleep (sedatives are contraindicated).

strange, huh?

Bob
 

wasabe64

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A big /ubbthreads/images/graemlins/thumbsup.gif for refusing to get burned by your insurer.

Have you ever had a sleep study done? Are you capable of achieving REM sleep with your condition?

I don't mean to pry, but I have Obstructive Sleep Aponea, so I am always curious about other sleep disorders.
 

pedalinbob

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ive had 2 full sleep studies, and will have another this year. i am on my 4th sleep specialist.

i have "mild" apnea (mostly non-obstructive)--and no desaturation, so a CPAP is not helpful. i wish it were--it would make things much more bearable!

i do have many apneic events: about 1 every 12 minutes. they are mostly mixed and central in nature: the signal does not get from the medulla to diaphragm, and apnea occurs.

essentially, i awaken about 5 times/hour.

i do have REM, but it is severely diminished.

the idea of treatment is to try to address one side of the equation (awake), in hopes that the other side (sleep) regulates.

it does work to some extent, but is far from perfect.

oh, well! we all have our demons. and i have a great wife and family to help me cope when things are particularly difficult.

im always tired. always.
but compared to some, my difficulty is nothing. i prefer to count my blessings...and flashlights!

Bob
 

turbodog

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I will throw this out in hope it will help you or someone else reading all this.

I used to have: mild sleep apnea, terrible indigestion, bad heartburn, and a spasming esophagus. It all went away after I lost about 20 lbs and quit overeating. I had been 'scoped' by a Gi doc and was on medicine, and it was not helping.

Amazing what eating too much will do to ya. Now it's almost impossible for me to even get simple heartburn.
 

BlindedByTheLite

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[ QUOTE ]
pedalinbob said:
im always tired. always.
but compared to some, my difficulty is nothing. i prefer to count my blessings...and flashlights!

Bob

[/ QUOTE ]
i have the same problem!
i wake up from hot flashes @ night.. so far doctors have connected it to stress/anxiety/panic disorder.

but i'm ALWAYS TIRED. when i'm in class, when i'm sitting around home, when i'm out with friends, always.

it really interferes with school and stopped me from holding a job for more than a few weeks b4 school.

how do you manage?? you're amazing! /ubbthreads/images/graemlins/buttrock.gif
 

pedalinbob

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one day at a time, bro, one day at a time.

hang in there.
i think Bruce Lee said "my capabilities will always exceed my limitations".

and yours will too.

i adapted, and work with the problem: try to go to sleep at the same time, exercise, hydrate, avoid stress (well, i try anyway!), eat a decent diet, meditate some, etc.
i dont drink or smoke. alcohol really makes me tired--but i still dont sleep well.

yup, i even tried pot: it works somewhat sleepwise, but i just dont feel comfortable doing it.

some days are good, some days are bad...some are very bad.

but, hey--i have some blessings too!

Bob
 

richpalm

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I relate! I have ADHD and work night shift. Without Adderall, I can't put two thoughts together. I like nights-it agrees with my circadian rhythm-was never a morning person-but I am tired ALL the time. Sleep 12-15 hrs. right around the clock and then some and still don't feel rested. Exercise is a four letter word. /ubbthreads/images/graemlins/icon15.gif Provigil didn't do enough to stay on it for me.

Doctor started me on Serroquel to deal with the anxiety problems, 100mg of that when I come home in the morning and it's *lights out*! /ubbthreads/images/graemlins/twakfl.gif Thet let me out of the prison of the bizzarre nightmares I always had. (in full digital THX sound, wide screen, blazing color and 15-track stereo) /ubbthreads/images/graemlins/banghead.gif The dreams wore me out more than just staying awake.

When it comes to insurance companies the first thing to come to mind is an AK-47 so I won't start on that...

Rich
 

wasabe64

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Icebreak, I've been on the machine for five years now. The seven years leading up to being diagnosed with OSA were a nightmare for both my wife and myself.

Bob, I still have stretches where I have to go without my CPAP, so I can really relate.

Judging by all of the replies here, I'd say that we're in good company.
 

bwaites

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Guys, I have been on both sides of this argument.

Ten years running my own insurance agency specializing in health insurance, then back to school, now ten plus years in the medical field.

Vilifying one part of the medical system is like that old saying, "When you point one finger at me, 4 fingers point back at you!"

Without insurance companies spreading the cost of medecines across the whole population, most of the medicines and refinements of the last 30-40 years would not have happened!

Only a small percentage of the overall population suffers from any one disease or condition at one time. That small population could not afford to pay for enough research to find the medecines which might help it. Insurance companies, by absorbing the cost of medecines for each condition, and spreading it across the total population in the form of premiums, allowed the development of all those new medecines like Provigil, Metadate CD, and others that only a relatively small percentage of the population will ever benefit from. That includes all those Cancer, AIDS, Hepatitis, and other exotic drugs necessary to treat really sick people. The United States alone funds more than 60% of all the research done worldwide in new medications, while only having 5% of world population. WE are the profit margin for the Drug Companies. Without us driving the engine of research through the insurance spreading of cost, very little would get done.

It is frustrating when an insurance company draws a line in the sand and says, "We are not paying for this drug, since this condition is not an indicated usage for this medecine."
Remember that insurance companies, by and large, are publicly traded, they must make money for their stockholders. Their interest lies in making money, not truly in the interest of taking care of patients. That IS the American Way.

Changing that will be very difficult, and I'm not sure we should. No other country has even come close to our medical systems ability to provide technical care to its people and those of the world who come here for care.

Living in a border state with Canada, we see thousand of Canadians cross the border for elective procedures like Hip/Knee Replacements that they pay for out of their pocket, because they don't want to wait for 4 or 5 years until their number comes up on the Canadian medical lottery.

In Great Britain, if you are 65 or older, you can't get kidney dialysis, since all their slots are full with younger patients.

Neither of those systems seem to work, either.

I'm on your side, but try to see both sides of the argument. You deal with this 1 time a day at worst. I deal with it 20 times a day, minimum.

If you want to know who is at fault, first look in the mirror. Do like our ancestors did, and live without the meds, or help become a part of the solution. Help develop a rational approach to the distribution of medical care. Nobody yet has figured it out! Somewhere out there is the Einstein of distribution of care, we just haven't figured who it is!

Without insurance companies, nothing is covered, everything is out of pocket. As you have shown already, most of us haven't been able to pay that amount out of pocket when faced with it, just ask any Medicare only patient what that is like if you haven't run into it yourself.

I have diabetics on $2000 worth of medecines monthly, heck, I have pain control patients on more than that! How could they survive without their meds? Not well, or as one of them said yesterday, "I died 5 years ago, but the medecines still work and have kept me alive, so every day is one more "last day" for me."

A very frustrating experience, but in most parts of the world they would love to have that kind of frustration, instead of the, "I'm starving, or I'm sick but NO medicine is available to help, or there IS a medicine but nobody I have ever met can afford it!"

Insurance companies are a necessary evil, regardless of whether we like them or not. Without them, Provigil wouldn't probably have even been discovered!

This got way longer than I expected, Good Luck, I'm glad you got your meds!

Bill
 

Icebreak

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wasabe64 -

I did a S.S. last year and got a BiPap. Less pressure going out than coming in. Man, I fought the mask and pressure forever. I've heard of another machine that can be programmed to ramp up and ramp down.

I kept telling the techs and Ph.D. the pressure wasn't right and they wanted to get me on a nasal spray that had steroids. I bought it but didn't use it. My sister told me they should have done two S.S.s.

I needed a repair done on it (there's a scam) the r tech I was working with was a sweet older woman that knew her stuff told me about a new mask that was very soft and had two layers. It also has velcro but with two quick release snaps. I helps quite a bit.

I'm inconsistent with the machine but when I use it, I wake up feeling great. Still have to take a half a Ambien from time to time.

When they told me all the systems that could be negatively affected by Apnea, I was really surprised. A bunch of the guys I work with use CPAPs.

Got any advice on making the experience better?

I hope you other guys get your sleep problems figured out.
For years I had to push myself into another plane of consciosness because I contract programmed. Program don't. I don't get paid. Sheesh what a pain, but what I got rolling I could do it. When I came home there wasn't much left of me.

Thanks
 

pedalinbob

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bwaites--great post!
i realize my post appears to slam the insurer--but, yes, they were doing their job by the book, so i really dont blame them.

i moved to my current employer due to the union (which i am beginning to regret) and great benefits.
the real culprit was when my employer changed insurers, and my coverage suddenly dropped.

i guess i was a bit harsh--but still find great irony in the outcome.
in all honesty, i HATE taking these meds, and use them as little as possible. sometimes, i go into an exacerbation, and useage goes up. it took over a year to utilize 3 months-worth of med.
also, Provigil is expensive because Cephalon holds the patent. when there is competition, the cost will drop.

sidenote: im not realy surprised there are a fair number here that have sleep issues. sleep disorders appear to be increasing.

i had a nasty head injury (4" crack in my skull!) in my teen years which may have caused my problems. evoked potentials with eeg show several areas of diminished brain activity.

one of the biggest problem that i have is with speech. i generally speak just fine. yet, fatigue/sleepiness interferes with "transduction", or the ability to get a thought from brain to mouth (this is true for everyone, but more pronounced for me). the result is that i sometimes struggle to find a word--it is there, in my mind, but it may take a sec or 2 to get it out.

i am acutely aware of this, bot nobody else seems to notice. makes me very fearful of public speaking--but i have to do it all the time to educate nurses/docs.

another strange thing: i fall asleep just fine, therefore i am not an insomniac. i am able to maintain wakefulness, therefore i am not a narcoleptic.

sleep science/neurobiology is an interesting field, but the more i read (i have read dozens of texts in search of answers), the more i realize how little we know about sleep.

i often find myself jealous of those that sleep well.
their angel is my demon.

icebreak: i feel your pain.

take care,
Bob
 

eluminator

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Bwaites, thanks for your post. You helped to explain the situation.

Pedalinbob, I'm glad you were able to get the medical care you wanted. I don't see it as a defeat for the insurance company though. They are just people trying to earn a living too. Your medical treatment won't be paid by them, but by their subscribers through increased premiums. That's okay, that's what it's all about.

Insurance companies have to be frugal when they pay insurance claims. Otherwise the premiums they would have to charge would be too high. They would have no customers, and would go out of business.

The alternative of having the government pay seems less desirable. At least now we have some choice in medical coverage, or to put it another way, we have some control over how we spend our money. When the government does it, we are at the mercy of the government. Those with the most political clout will benefit, in the short term, at the expense of those with less clout. And furthermore, medical costs will increase. Unlike private companies, the government doesn't seem to have to look at the bottom line. Being profitable is not high on their list of priorities. They seem to have an endless supply of money thanks to their ability to force us to pay whatever taxes they impose on us.

It's a sad fact that all the money in the world isn't enough to satisfy our desire for medical treatment. All of us want ourselves and our loved ones to live forever, free from disease. Let's face it. No matter how much money we spend, none of us are going to get out of here alive.

I wish our schools taught economics. I see it as just a study of life on earth. Interesting to me, and useful. I don't think it's just a coincidence that in 1776 Adam Smith published his book "Wealth of Nations", and in that same year something miraculous happened here in America. I fear the bloom is off the rose now though.

Pedalin, I wish you a speedy recovery.

I suppose I could wish the billions of people on earth a speedy recovery from whatever ills they are suffering. Fat chance that will happen, though.
 

bwaites

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Pedalin, I hope you don't feel as if I was attempting to slam YOU. Not the case at all.

This is a huge issue, I actually saw your post on a break at work but waited to answer it until I got home so I had a little time to give details.

I understand your frustration and can appreciate the irony of the situation. Medicine, (and medical insurance perhaps more so) is an evolving discipline, still at least as much art as science. As in many arts, we find things that work before the science proves them, as you have found with Provigil.

Sleep Science is still MUCH more art than it is pure science, and we are still trying to figure out the risks associated with poor sleep/bad sleep/non-restful sleep, though most of us are coming to understand that it contributes to exacerbations of just about every chronic disease state and probably causes some. Idiopathic daytime somnolence is VERY difficult, because you have to rule out so many other things that cause daytime fatigue.

The cost of medicine and all the new tests that are available is going to be THE destabilizing influence on medical treatment and costs of the next decade. For instance, though doctors are blamed for much of the increase in costs, a general surgeon now makes less for an appendectomy or gall bladder removal in dollars than he did in 1976, never mind an adjustment for the inflation since. At least the insurance companies continue to pay most of the doctors bills, on average 80%, Medicare pays 55-60%, and in Washington State, at least, Medicaid pays between 20-30%. If an average visit charge is 80 dollars, they pay 25 or so. Figure out how to pay the light bill on 30% of billed revenue, much less the nurses at 20 dollars and hour, the receptionist at 10, the billing and records people at 12, and then pay all their insurance, retirement, and so on. Not hard to see why so many doctors are bailing in their 50's or moving to states where the pay is more if they are younger. AND I haven't even mentioned malpractice, where my premiums quadrupled, even though I have never had a claim.

Good Luck to all of you, feel free to ask if I can help or answer and questions.

Bill
 

pedalinbob

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thanks for the info, b.
no, i didnt feel like you were hammering me-- i very much appreciate the knowlege you bring.

i also have a unique perspective, being an RN...there sure are some major difficulties in health care, and you echo many of my experiences.
the cost is staggering!!! and i sure hove no answers.

yes--i have had ct scans, PET scans, x-rays, cerebral angios, 2 sleep studies, etc.

no reason found--damn frustrating!!!

at that point, i decided to make most of the difference myself--to modify my lifestyle to minimize the impact of the problem.

anyway, take care,
Bob
 

bwaites

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Bob, at least you did all the background to get it done and try to understand the issues associated with it.

All the changes you have made will, in the long run, make a difference. I have yet to see an old person with the illness, they either figure out how to deal with it or die young, but I haven't figured out which yet!

Good Luck!

Bill
 
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