Only doctor I can use isn't trustworthy (CSA here)

[erouting]

Hi all, 

Got a sleep study, asked for the raw results because that record is subject to medical disclosure in my state. Doctor refused, hospital refused, no legal justification given for refusal. Looking like I'm going to court. I obviously don't trust a provider that won't comply with basic record release laws in the state they operate in. I also don't trust the doctor because when I sent them the CMS page for what medicare would pay, which isn't a standard CPAP for CSA, they ignored me and continued to insist that they'd start with a CPAP. I then told them that I refused to give consent for the use of a CPAP during a sleep study due to insurance concerns and they ignored me. It's not a good sign when health care providers respond to a written refusal of a portion of a procedure with silence. 

So, either I have central sleep apnea or the doctor is committing medicare fraud and medical malpractice. The later does happen at sleep centers with a regrettable degree of regularity, as you probably know. I have no way to check because I don't have the raw test data to look over. You'll note I said central sleep apnea, not OSA. I don't have OSA, even according to the, as yet, unverifiable claims of the provider. 

So now what? I have a number of health problems and am disabled. I can't drive to the next nearest place that takes medicare to get another sleep test run. That being the case the only option I can think of is to build a testing device myself, which I'm making good progress on, rerun the test and then either build, or buy an OSCAR compatible bipap or ASV device on the aftermarket. In considering that claim it helps to know that I have high functioning autism. small talk, dinner parties and long car drives are beyond me but building medical equipment from scratch in a couple months is well within my wheel house. 

Anyone else have any ideas? 

Second question, I don't breathe during the day either. My O2 routinely falls below 85%, not because I can't breathe but because I focus so completely on whatever I'm working on that I just don't breathe. Standard of care is to look into that before evaluating me for CSA, but "I have autism and breathing is less interesting than engineering." isn't a diagnosis. My waking O2 looks worse than the sleeping O2 the doctor came back with. I'm building a little device that squeezes my arm every time my O2 falls below 95%, but have any of just not breathing because it isn't very interesting? I don't think it's Ondine's curse, I do have a normal breath response, just stops when I'm concentrating or stressed and, possibly if the doctor isn't committing fraud, when I'm asleep. 

One theory I have is that I down regulated my body's breath response by my body adapting to spending years not breathing normally during the day time thus creating a persistent low O2 high CO2 state. I can't find any data on that one way or the other but given the body's adaptive response to other stimuli it's likely possible. In which case I just need to stop being a fool and breathe normally during the daytime and that may fix my alleged nighttime issues over time. I get distracted though. So squeezy arm device. 

Input? Insults? General thoughts? 

Thanks for taking the time to read this.

[Sleeprider]

In addition to any applicable Stare law you are also covered by Federal HIPAA. https://www.hhs.gov/hipaa/for-profession...index.html#

It seems you are going to have to fight for good health care. Do not overlook your primary doctor as a resource ultimate assist you. Specialists are a scourge in the sleep medicine industry and I don’t use them. It would be very unlikely the raw test results would be denied to your primary provider if you worked through them. ASV is the appropriate sleep disordered breathing therapy, but you are citing problems while awake which is a different matter. Normally the body responds strongly to a buildup of CO2 and triggers recovery breathing. Your issues are apparently more complex, but regardless, you are entitled to test results, diagnoses, prescriptions and other records to help you obtain the care needed.

[erouting]

Hi SleepRider, thank you for the reply.

Glad I'm not the only one who near universally hates specialists. My psychiatrist is good, every other one I've dealt with (with a degree higher than PA) has been an absolutely terrible human being with ignorance only exceeded by arrogance. 

Of the six excuses I've gotten for why this data isn't being handed over the only one I find remotely credible is that they have no way of extracting the raw data outside the software suite provided to them by the manufacturer. I find this credible because the sleep study system they're using looks like it was made in the 90s. And back then yeah, proprietary and closed data collection was very much a thing. I'll ask my PCP to help but, if that's true, it still won't get me the data because my PCP doesn't have their archaic software suite. Why they're producing medical records that are defacto non-compliant with medical record release laws is something only a judge might force them to answer. 

Thanks for mentioning HIPAA. I didn't list it because it doesn't provide a private cause of action, meaning I can't sue under it. I've filed a HIPAA complaint as well as a complaint with the state medical commission. HHS (HIPAA) hasn't gotten back to me. The state medical commission, which is made up of doctors, refused to act on my complaint and also refused to provide a reason for why they refused to act on my complaint. I FOIAed the minutes from their review of my case to see if they have any justification for not complying with the letter of the law. I get the impression they either haven't read the law or don't care about it. However, state law provides a private cause of action that will allow me to sue the hospital. But I'm a bit worried because the hospital is a big employer in the region and it's quite possible that the lower court judge will rule against me not on the merits but because the hospital asks him to. Then the hospital will be entitled to attorney's fees and I'll have to appeal. Appellate court is outside the service area of this hospital and should let me get a fair hearing but that will probably take at least a year of worrying that I might have to file for bankruptcy to keep my home because I can't afford the hospital's attorney fees. So far as I can tell there is no legal basis to refuse to release these records, but I haven't yet spent the several days on the law library computer to make sure of that. This whole thing really cheezes me off. They're argument seems to be that they're bigger than me so the laws don't apply to them and I can just deal with it.  

I thought ASV was appropriate for CSA. That's what medicare said at any rate. Thank you for the confirmation.

[greatunclebill]

In my lifetime I've had pretty good luck with US Senators. Send a letter to both of your US Senators Washington offices explaining the problem with not getting your records. I guaranty the right person in the senate will get it and act on it. CEO's don't like getting calls from senators so poop runs down hill very quickly,

[erouting]

Ohhh, that's a really good idea and I never would have thought of it. Thank you so much for suggesting it! 

I'll work on that today. And maybe all the local senators and reps who oversee the state medical commission too. 


Thanks again.

[Rich66]

As for "....insist that they'd start with a CPAP." My medicare required to start with CPAP when I first started with PAP therapy. When it proved to be of no help, then we went to the next level -- then the next, then on the 4th try, I finally was allowed an ASV machine. Not only did I have to try the different machines, but I also had to do more sleep studies each time, and more doctor visits. It seems to be the norm because of insurance trying to save money in the long run.

[erouting]

Hi Rich66,

Thanks for sharing your experience with this process, I'm sorry they make people do that. 

While that's what the doctor said too, the issue I had with that was that the doctor was wrong according to the plain language of medicare's publicly available coverage criteria, at least for a diagnosis of central or complex apnea. 

CMS makes its policies publicly available in part, I think, so that when providers lie (or talk out their rear) to patients it's, well, not really easy, but at least possible to call them out on it. For central sleep apnea those CMS criteria do not match up with the claim that you need to start with a CPAP, indeed, medicare won't cover a CPAP for CSA or complex apnea according to the published policy. I'm sure there's a workaround for that, possibly by committing medicare fraud, but the plain language of the policy states that a bipap or ASV device is covered and nothing else. I haven't reviewed the policy for OSA but I would imagine that does require starting with a CPAP device. I objected to that in my case because I don't have breathing obstruction issues. I've seen no evidence that higher pressure will make my brain tell my body to breathe when it others doesn't. Maybe there is and I've missed it, but, from the reading I've done, including sleep medicine practice guides, the "evidence" seems to consist of "We've always done it this way, we'll always do it this way, I learned all I ever will in medical school and anyone who disagrees we won't treat." No citations, no studies, no supporting evidence, just an unsupported opinion. 

I'd be a pretty poor fellow to criticize their lack of cites and not give any of my own so:

The CMS coverage criteria for medicare paying for a respiratory assist device for CSA or complex apnea, is here: https://www.cms.gov/medicare-coverage-da...CDId=33800

There are only two devices covered for central and complex sleep apnea per that policy, which have the billing codes E0470 and E0471, what those billing codes refer to is also available online here: https://www.aapc.com/codes/hcpcs-codes/E0470 and here https://www.aapc.com/codes/hcpcs-codes/E0471

Before you go thinking I actually read through all the CMS policies to locate that one, I found this: https://document.resmed.com/documents/ar...elines.pdf (see top of page 3 for CSA and complex) and then looked up those codes and then found the CMS policy. Which my doctor ignored. Rather odd to claim that insurance requires something and then ignore the literal insurance requirements when they prove the contrary, but I guess that's the standard for specialists these days. 


All that said, if you have reason to believe I'm mistaken please let me know. I do my best, but my understanding of medicare is limited to reading the applicable policies (that I can find) published by CMS.

[Cpapian]

I don't think it is worth your while to sue, risk bankruptcy, wait forever for results and all the associated stress. Can you just buy a second hand machine?

[erouting]

I tend to agree with you. I can probably buy one second hand though I'm not sure what the best place to get one is. 

Thanks for taking the time to reply Cpapian, 

I tend to agree with you. The reason I am still even considering filing suit is because this isn't just a me issue. If the hospital does this to someone who knows the law and fights for their rights, what are they doing to people who don't? A court ordered assessment of medical records policies, which this might result in if they try to argue the made up BS with a judge that they've tried with me, would help everyone. Is that worth my time and the potential risk? I don't know yet. I have two years before the clock runs out on my cause of action so I'm still thinking about it. The other advantage to waiting is that I might bring a med mal suit instead since I got a letter yesterday using HIPAA specific language that, if you read the definition, means they just confirmed their earlier statement that this medicare paid for test wasn't used to diagnose me. And a med mal suit will get me discovery. And if enough time has passed and they delete the record in violation of state law and the fact that I've told them I'll be suing them over this then evidence spoliation rules should come into play, which may create the rebuttable presumption that the evidence they destroyed supported my claim of med mal. In which case they are presumed to have committed fraud and malpractice against a disabled autist, which they can rebut, but doing so will probably require the record they destroyed. And that opens the door to IIED in my state. Then this goes from a document request to the threat of a cash payout, bad press and some other nasty things. I don't actually want a cash settlement because the hospital does good work sometimes, but that's a better bargaining position than I'm in now to get them to reform their practices, which is what I do want.  

I can probably buy one on the aftermarket but I don't know where yet. I'm leaning toward Craigslist. Anyone have thoughts or resources on the reliability of high hours used machines? Alternative places to buy are also welcome if that isn't a forum policy violation. 

All of that said, is there some reason someone hasn't just built an open source line of RADs yet? I'm still trying to find the regs to see if they say "buy/own/sell/sold" or "use" for class 2 devices but given that blood pressure monitors are also class 2 devices (https://www.accessdata.fda.gov/scripts/c...r=870.1120) and everyone gets around that by saying "THIS IS NOT A MEDICAL DEVICE" and the FDA doesn't care enough to do anything about it such that you can buy one off Amazon. I have a great deal of trouble seeing how anything could be done to an anonymous online group making these in their own homes for their own use or teaching others how to make them. Or even how the FDA would enforce it. Actually, I think the states would have to enforce it because the FDA regulates sellers of goods rather than consumers. And, from what I can tell, the states don't levy penalties against the use of medical devices without a prescription. Probably because it's a bad look to jail an 80 year for putting a motor on their mechanical wheelchair (a class 2 prescription requiring device just like a RAD following the addition of a battery.) Besides, people build powered wheel chairs for poor kids all the time, with their names and photos in the paper and none of them are ever charged with any crime. "Notorious gang of volunteer scofflaws jailed following charity wheelchair build for disabled three year old." Yeah, that'd go over well with the electorate. 

Personally, I make a point of ignoring any law that exists only to guarantee profits to a sector of the economy at the expense of the general population so I'll eventually build one regardless, but I'm not sure it's illegal to build one for personal use in the first place. And if it's not illegal then there needs to be at least an effort to build these systems both because of the concern regarding encryption changes locking out OSCAR and, critically, because it will spike every bad sleep specialist's blood pressure. And who doesn't want to that?

Do you, or anyone else reading this, think open sourcing RAD hardware is a bad idea and want to contend the point with me? I may be wrong. I always listen even if I don't agree.

[Sleeprider]

I think if you check out Dot Med website you may find some decent deals on Resmed Aircurve 10 ASVs or the Resmed S9 VPAP Adapt which was the earlier model. Prices tend to vary by run-hours on the machines. Just search under Respiratory/Bilevel and put in Resmed ASV and you should get a lot of results. The advantage of self-treating is you can quickly demonstrate efficacy with an advanced device (or not). This tends to circumvent the trial and error approach to use CPAP, Bilevel, and the Bilevel with backup.