ALS, BiPAP, Insurance and the PSG...

[Michael Blue]

Hi all!

I'm a Polysomnographic Technologist with a question regarding ALS patients, BiPAP, and whether insurance companies require normal "qualification" (via a PSG study) for BiPAP with ALS patients.

Actually...That is the question...When a Dr decides to Rx BiPAP for an ALS Pt, does the Ins Co require a PSG to show "need" like they do for traditional PSG Pts, or are there different circumstances, given the degenerative nature of ALS?

Thanks!

~M

 

[brooksea]

From what I understand the pALS breathing (FVC) has to be at 50% or below in order to have Medicare cover the purchase of a BiPAP. As for regular insurance, I don't know what qualifies a pALS for a BiPAP.

 

[BethU]

I don't think many of us know much about the insurance paperwork the doctors have to do ... you'd be better off talking to billing staff in doctors' offices. Or asking insurance companies. I suspect different companies have different guidelines.

 

[rose]

Hi, I agree that as patients we don't know what all is involved. In my particular case, my doctors said my breathing while awake would not qualify me for insurance coverage, and chose the sleep study route to get approval, as my problems are mostly while relaxed/sleeiping.

The snag was the doctor that oversees the sleep clinic found no signs of central sleep apnea, only obstructive, hence he insisted I try the CPAP first, (even though most of my difficulty is expiration rather than inspiration and my medical situation was explained to him over the phone by the doctor that ordered the study). How they worked it out is a prescription for me to try CPAP for two weeks, and if I cannot adjust to the resistance when breathing out, then he will approve a changeover to BiPAP.

So, I'd think that getting approval via a sleep study worked for insurance approval, but having to try the CPAP first seems the long way around to get what is needed.

 

[Michael Blue]

Am I wrong for being VERY frustrated for you guys by this?
They should be able to simply order BiPAP based solely on the diagnosis of ALS.
If they want a study to help fit you for a mask and determine what pressures work best for you, so be it...But you shouldn't have to wade through a sea of uninformed medical professionals to get the help you really need...

 

[Al]

No you are not wrong but you should not be able to just order a Bipap. When I got mine I spent 5 days in a Rehab Clinic trying different masks, pressures just to get me set up and comfortable with it. I've heard of people here having it dropped of with the instructions, just plug it in, place mask on face and call us if you have a problem. I don't know who's fault it is but it doesn't sound right to me.

AL.

 

[Michael Blue]

No, that's not right, either. That's one of the major things we do in a Sleep Lab; fit you for an appropriate mask and adjust the pressure to meet your needs. My point was you shouldn't have to go through a baseline PSG and fail a CPAP trial just to get there; you don't need CPAP, you need BiPAP.

 

[Al]

I'll agree with you 100% on that. A lot of docs unfamiliar with ALS will prescribe CPAP because they don't really understand the breathing process in an ALS patient. Some will prescribe 02 when it is not lack of 02, it is lack of air movement.

AL.

 

[rose]

I've been struggling with this damned CPAP so that I can qualify to get the BiPAP and it is frustrating. Especially as the sleep clinic doctor had a phone consultation with my doctor over it, and the impression he gave when he relented and said I could get the BiPAP after a trial of the other, was that he was bending the rules to help me out. I didn't understand the importance of how they were different until using it, but anyone that works in that field definitely would.

But then, I'm also the person that had SS disability denied because the SS reviewer didn't think it important to obtain my records from my neurologist down at Johns Hopkins, or the ALS clinic, and basically didn't contact any doctor that was involved with my diagnosis.

 

[Michael Blue]

I'm sorry Rose...That sucks.
I'm a Non-Registered Sleep Tech who's only been on the job a bit over a year, and have only had ONE ALS patient, but I have done a couple hours of homework and found this dilemma. I can't for the life of me understand how an MD could not do the same, and find the error of this particular part of the system...I'll be making more calls and trying to get more info, but in the end I'm going to get with our Medical Director (who is a Pulmonologist) and see if there's any way to get the system changed for ALS patients.

 

[lynster]

Please continue to try to change the system... My husband had an initial sleep study done, and was called back to be fitted for a CPAP. The upshot was, he stopped breathing as soon as his brain got oxygen. In retrospect, it was no surprise, since he had been extremely hypoxic. He even was having hallucinations. So... after a hospital, then another hospital, he came home. Not yet diagnosed with ALS, he was put on a BiPAP and oxygen. He must have had the settings changed a half dozen times. It took several months until he was finally prescribed with an AVAPS and no oxygen. He is now sleeping with his Darth Vader mask, and getting a good night's sleep.

Anyway, it seems that ALS is so on the back burner with anyone involved with the sleep studies that it comes as a surprise to them that it is indeed ALS. Keep plugging, and maybe someone else will not have to go through all the horse hockey in the future.

Lynn
CALS/wife of PALS diagnosed 08/08

 

[JACKIEMAX]

My Views On Bipaps,ins. Etc.

My Precious And Formerly Vivacious,healthy Husband Was Dx With Als
2 Years Beforet His Jan, Alho H Had Symptoms The Year Before That; We Just
Could Not Find An Als Specialist For A Year To Dx Him.
He Has Been On The Oxygen In His Nose To Sleep From The Beginning Almost,
And Has Been On The Bipap Machine For 2 Years Now Under Hospice As He
Would Not Be Able To Breathe On His Own Over A Few Minutes Without It.

Al Is Right, It Is Not The Oxygen That Goes Into The Bipap, It Is The Air
That's Keeping Them Alive .

My Husband Is Completely Bedgast, Has To Be Fed Through His Peg Tube
Most Of The Time Now, And Has To B E Turned Over In Bed And Give Roxonol
To Sleep And Rest. This Is A Bad Bad Bad Disease. As Much As I Love This
Man, My Heart Breaks When I See Him In Misery/

Any Idea? Jackiemax

 

[rose]

I meant to update my earlier post before now.... there is no comparison between how much the BiPAP helps over the CPAP. During the time that I was required to try the CPAP, I had so much trouble expelling all the air that was blown in! I would literally have to burp, because the air would get down in my esophagus, it would clog up my ears to where I'd have to swallow to try to get them to pop, and I still got headaches, not as bad as without any machine, but it still wasn't getting all of the Co2 out of my system.

The other problem I had was the mask given me by the respiratory therapist did not fit well. Now that I actually have a mask that fits me, I wake up truly feeling rested. Its amazing.

The only remaining problem I have, is that I have dry mouth anyway, and this makes it worse, I think I need a machine that has a larger capacity for humidity so I can crank it up more. If I run it at the max now, it helps a lot with the dryness, but I run out of water before the night is over.

 

[Michael Blue]

I just thought I would pop in an update here...

I'm still pursuing this, and have had continual issues with "professionals" who "know respiratory disorders", even though this is a degenerative neromuscular disorder, and not specifically respiratory.

No news yet, but I have contacted the ALS Association AND Medicare directly regarding this.

Thanks for your support, lol!

~M

 

[danjay]

keep pushing

Folks - I was diagnosed with PMA 2.5 years ago and had pneumonia last spring, truly awful.
My low overnight oxygen first had them put me on oxygen but finally last summer the neurologist
at CU medical center in Denver stressed emphatically I should have a bipap and that a sleep
study was unnecessary. My pulmonologist was good enough to read up on it and then
just prescribe it and so far my Insurance has paid for it. The equipment provider did the fitting
and we followed up with another overnight oximetry that is still a tad low but not bad (a couple
episodes in the high 80% range). All in all I've been lucky here. Do press your doctors to
just do it. It should be simple and automatic and its a life-saver.

Good luck and happy holidays to all
Dan