Questions about the transition to Medicare and when/whether to get new machines

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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robysue1
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Questions about the transition to Medicare and when/whether to get new machines

Post by robysue1 » Fri Sep 30, 2022 3:16 pm

Folks,

I apologize in advance for the length of this post. But I want to provide as much detail as I can to explain what the situation is for both hubby and myself and our xPAP machines.

Age: Both of us are currently 64 and we turn 65 next July. (Our birthdays are 8 days apart.) So we'll be forced into Medicare next summer and I know that we'll have to start the process of signing up and figuring out exactly what kind of Medicare to use in the spring of 2023. Any advice is welcome.

Diagnostic Histories and xPAP usage:
Me: I was diagnosed with moderate OSA back in 2010. My diagnostic AHI was 23.something, but here's the complication: Almost all of my events were scored as hypopneas with arousal and there were no O2 desats scored with any of the hypopneas. Back then, this criteria was considered the alternate definition for scoring hypopneas. The traditional definition definition required a 4% O2 desat associated with the reduced airflow, but the alternate definition only required an arousal associated with the reduced airflow. And back then, Medicare insisted that hypopneas be scored only if they had a 4% O2 desat. Well, if you eliminate the hypopneas with arousal from my diagnostic sleep study, my AHI goes from 23.something (moderate OSA) to 3.5 (no OSA). My current insurance company (employer provided) had no problem accepting the hypopneas with arousal (and no O2 desat) and they paid the 50% of the machine as per their contract for durable medical equipment.

My first machine was a Resmed S9 AutoSet, but I simply could not adjust to it: Starting xPAP therapy triggered the absolute worst case of insomnia that I've ever dealt with. And after 1.5 months of not sleeping with the Remed and feeling like death warmed over and dealing with severe aerophagia, the PA in the sleep doc's office sent me for a BiPAP titration. And so I got a new PR System One Auto BiPAP in January 2011. That machine was much easier on my stomach, and eventually with a whole lot of hard work, I was able to tame the insomnia monster and start actually sleeping decently with the machine by around my 1st anniversary of PAPing.

In 2016, when my PR System One Auto BiPAP turned 5 years old, I was still seeing an excellent sleep doc (who has now retired). I mentioned that I was interested in replacing/upgrading the BiPAP to a new model. As I recall, my insurance company required a new sleep study, and so back to the lab I went. I was not told to skip using my machine for a few days before the new sleep test. It showed a untreated AHI of something like 18 or 19.something. But again, almost all the events were hypopneas with arousal and if you exclude them, the AHI was again well below 5.0. The new machine was bought with insurance money and I've been using the PR DreamStation Auto BiPAP since October 2016 except for a period in 2018-19 when I gave my DreamStation to my MIL to use and I went back to using the PR System One Auto BiPAP. I got the DreamStation back after MIL died at 98 from COPD and congestive heart failure in 2019 and I've been using it since then.

Hubby: He was diagnosed with mild OSA back in 2013. His diagnostic AHI was around 10, and like me almost all of his events were hypopneas with arousal. You take those away and his diagnostic AHI drops to something like 2.something. But hubby was also very symptomatic. As in hubby was falling asleep in front of the tv even when he was genuinely interested in the program and was finding it very difficult to not fall asleep while reading. He felt very sleepy during much of the day. He did a titration study and felt great the morning after the titration study (and didn't fall asleep on the couch for the first time in months.) Because his OSA was so mild, but his symptoms were significant, his sleep doc and his PCP both left the decision about whether to start CPAP therapy to him. Hubby hemmed and hawed for about 6 months, and then finally bit the bullet and requested an APAP in the spring of 2014. He's used the machine every night since then, and most of the time he feels decent enough, although in the last year he once again started having problems with daytime sleepies.

In looking at Hubby's data from his PR System One Series 60 APAP, there was nothing obvious that needed adjusting. He mentioned this to his PCP sometime last winter and a home sleep study was ordered. Well, the home sleep study was not a good idea: He had to do it on a night when there was a whole lot of chaos caused by the fact that we would be traveling the next day as I recall. At any rate, he got to bed late, got up early, and didn't get much sleep in between simply because of what was going on in our own lives. He also got trapped in the wires and we had to do some reattaching one of them in the middle of the night. (Yes, we reported this.) But the upshot was the lab thought he got enough sleep for a valid test and his AHI for the night was just under 5.0. Notably, the lab that scored the test requires a hypopnea to have a 4% desat in order to be scored. So hubby is officially no longer an "OSA patient", but he continues to use his PR System One Series 60 APAP because when he doesn't use it, he wakes up feeling pretty miserable and he subjectively doesn't feel as energetic or as well as he does when he sleeps with the APAP.

Our "sleep doctor": We don't have one
I went through 3 different sleep docs before finally finding one that did not treat me like a mushroom. Sleep doc #4 was golden: He used a PAP himself. He understood that I understood what my data meant. He worked with me and didn't try to shoehorn me into what "other patients" are like. He was genuinely interested in how hard it had been for me to get to where I could sleep with the mask. He was instrumental in getting me onto Belsomra when it first came out and I was still in need of a sleeping pill.

And then he retired in 2019. And I haven't seen a sleep doc since. But since I'm not dealing with the massive insomnia monster anymore and the delayed sleep phase problem is controlled by my being able to choose to only teach after 11:00 am, I'm actually sleeping pretty decently these days and I haven't seen much need to try to go through the process of breaking in a new sleep doc.

Because Hubby's OSA was so mild, the sleep doc handed him off to his PCP as soon as the titration test was done. And all his PCP does is ask him whether he uses the machine at night.


Our "DME": We don't have one
We got both machines from a small local DME that was willing to sell me a S9 Autoset back in August 2010 instead of insisting on sticking me with an S9 Escape. But that DME was bought by a chain. And then the chain went belly up. And we've literally not had any official contact with a DME for at least 3 years: I just bought mask parts when we needed them at CPAP.com, filters from the local drug store, and we'd already accumulated so many hoses and other stuff that we really didn't need to buy much from CPAP.com in the first place.

I did have to contact a local brick-and-mortar DME this summer just before we went on an extended trip to Europe because hubby badly needed new headgear. It took a fair amount of phone tag to find one that would let hubby's PCP just fax over a script for the mask rather than telling me hubby had to have a new sleep study before they could accept him as a patient. Like a fool, however, I can't remember the name of this place because we were literally in the middle of packing so we could fly out the next day when I drove down to get his new mask.


Our xPAP machines and their history
My old PR System One BiPAP is now dead or dying: It turns itself off and on repeatedly when plugged in. I had hoped to use it with a camping battery this summer when we were traveling, but the dry run in our bedroom killed that idea within 5 or 10 minutes.

Hubby's PR System One Auto is now 8 years old. It seems to be running fine, but hubby is bothered by the fact that we don't have a single back-up machine anymore between the two of us.

My PR DreamStation will soon turn 6 years old. It has a bit of rust where the power cord attaches to the machine. When I gave it to my MIL when she was in the nursing home, it did not have that rust. When I got it back, it did. Given the multiple conversations I had with MIL about her PAP therapy for COPD problems while she was still alive, it's quite clear the nursing home staff had no real idea how to take care of the equipment and did not even regularly change the air filters for her. The machine runs well off of regular power, but it will no longer run off the battery pack. (It did run off the battery before I gave it to my MIL.)

All three machines are (technically) under recall from PR. I've registered all three of them, but I've only gotten email about my PR Dreamstation. And the only contact that I've had from PR is that they have "matched" my machine with a DME. But no info on what DME.

So who knows if/when PR will ever replace the machines we currently use under the recall.


Now for the questions
Question 1: Does anybody know if Medicare still insists that in order to score a hypopnea, there must be an associated 4% O2 desat?

Question 2: Am I better off bringing up the idea of replacing my PR Dreamstation BiPAP on the grounds that it is 6 years old and going ahead and having another round of sleep studies done before I go on Medicare?

Question 3: If I wait until I am on Medicare, will I be forced to do another sleep study before they will replace the machine? (Either my existing PR Dreamstation, or, if I'm lucky the replacement PR Dreamstation 2 in 5 or 6 years after I get it.) And if I have to undergo another sleep test and its results are similar to the two diagnostic sleep tests that I've already had, is Medicare going to say I just don't need a machine because they won't score hypopneas that result in arousals, but not 4% O2 desats?

Question 4: Once I am on Medicare, if/when I need to replace my machine, how picky are they going to be before authorizing an Auto bi-level machine for me? The only reason I was put on bi-level was the horrid aerophagia and other adjustment problems. But the first PR System One Auto BiPAP was a godsend: It and cpaptalk.com are the only reasons I'm still PAPing today. And I really, really do not want to go back to dealing with an AutoPAP. The S9 AutoSet and I simply did not get along. And when I've played around with my husband's PR System One APAP, I get the same kind of problems I had with the S9, and I just don't have them with the BiPAP.

Question 5: What about hubby? Do we just accept that neither our current insurance nor Medicare is going to pay for a replacement machine for his 8 year old System One Series 60? In that case, do we buy on the gray, used market without a script? Or do we ask his PCP for a script and just pay out-of-pocket when we're ready to replace his machine, particularly if PR doesn't get around to replacing his machine for a while or gives him another refurbished, but still 8 year old PR System One Series 60 machine.

Question 6: Going forward after we're on Medicare: Does the amount Medicare pay for CPAP equipment depend on whether you sign up for traditional Medicare or a Medicare Advantage plan?

Question 7: Any general advice on how to choose an appropriate Medicare plan?

Thanks!
Robysue
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booksfan
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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by booksfan » Fri Sep 30, 2022 5:39 pm

I have no answers for you, but hubby and I both turn 65 next year (him in March and me in October), so I am interested to see what answers you get to the questions about choosing a plan, coverage for equipment, etc. Hubby's machine is much older than 5 years, mine is coming up on that and I believe I've read that Medicare (at least some plans) only does rentals, so It would be better for us if we could get them replaced BEFORE starting on Medicare.

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Pugsy
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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by Pugsy » Fri Sep 30, 2022 5:42 pm

robysue1 wrote:
Fri Sep 30, 2022 3:16 pm
Question 6: Going forward after we're on Medicare: Does the amount Medicare pay for CPAP equipment depend on whether you sign up for traditional Medicare or a Medicare Advantage plan?
Straight/traditional Medicare pays 80% (of approved amount) and you or your supplement will pay 20% (assuming part B deductible has been satisfied).
Straight Medicare still does the 13 month capped rental thing for the machine.

Medicare Advantage plans are a whole different beast and more and more of them are going to a perpetual rental for the machine and that means you would pay the 20% of the approved amount forever. Be very careful when examining Advantage plans if this is something you are leaning to. I know mine went from the capped rental to the "forever rent" but since I don't plan on letting insurance pay for a new machine I don't really care. I would never want to rent forever though.

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robysue1
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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by robysue1 » Fri Sep 30, 2022 6:10 pm

Pugsy wrote:
Fri Sep 30, 2022 5:42 pm
Straight/traditional Medicare pays 80% (of approved amount) and you or your supplement will pay 20% (assuming part B deductible has been satisfied).
Straight Medicare still does the 13 month capped rental thing for the machine.

Medicare Advantage plans are a whole different beast and more and more of them are going to a perpetual rental for the machine and that means you would pay the 20% of the approved amount forever. Be very careful when examining Advantage plans if this is something you are leaning to. I know mine went from the capped rental to the "forever rent" but since I don't plan on letting insurance pay for a new machine I don't really care. I would never want to rent forever though.
That is good advice. And I'll definitely keep it in mind: The idea of "forever rent" plans for something like a CPAP don't really make any sense if you ask me.
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lynninnj
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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by lynninnj » Fri Sep 30, 2022 7:52 pm

Agree with Pugsy about being cautious of the “advantage “ plans.

If you go with basic medicare though there are some good supplements that are available out there.

jmho

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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by clownbell » Fri Sep 30, 2022 8:28 pm

With all due respect to the posts above, and not wanting to start a pissing contest, there may be another path. I concur that if you are considering a Medicate Advantage plan, it is best to look very carefully at the details.

IF you are a Kaiser patient, and IF you are considering Kaiser Senior Advantage (which is a Medicare Advantage plan), know that not all Kaiser Sr Advantage plans use the perpetual rental model. I have become convinced that different Kaiser areas are essentially different kingdoms. In my case, I live in Alameda County, California. When I went on PAP in February 2021, my machine was a straightforward purchase. I paid 20% on Day #1. No monthly rentals. I presume Kaiser paid the rest per their Medicare contract. Perhaps different Kaiser areas may have different Medicare contract provisions. I pay 20% for masks and supplies, as would be expected. Other comments to the contrary notwithstanding, in my case Apria has been very easy to deal with. I call and order the items I need and pay 20% and they arrive at my door in 2-3 business days.

Just one guy's experience.

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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by chunkyfrog » Fri Sep 30, 2022 10:40 pm

Every state has SHIP, or something similar, which is free, state paid assessment
of the Medicare plans in your area. Take advantage of it.
You cannot afford not to.
Beware of insurance "advisors", who work on commission.
The Medicare rigamarole is intentionally so complicated that few can safely negotiate it.

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Re: Questions about the transition to Medicare and when/whether to get new machines

Post by beautifuldreamer » Tue Oct 04, 2022 8:01 am

When I was researching the medicare plans available to me from the former employer group I retired from-

I looked at the advantage plans first and the ones offered to me, said you do not own the durable medical equipment after 13 months.

Then I proceeded to look into the supplemental plan that was offered and that was based on the original medicare for 80% and then my supplemental covered the 20% and basically I didn't have to pay out of pocket for things unless it isn't medicare approved - and with original medicare you own the PAP machine after 13 months.

I met with my sleep doc to get a new prescription to get a PAP paid by medicare- and that appointment was covered - I also had to get another sleep study, and have yet to see the claim processed for the sleep study.

I figured if I didn't like my plan that I chose, I could always change during open enrollment season which starts October 15th for my employer group where I retired from . . .
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