Two reminders: Please share with anyone struggling on CPAP or anxious about attempting CPAP. There are better PAP alternatives, and this essay explains why CPAP fails so frequently and how advanced PAP is superior.
The essay is in 4 installments and includes an audio version (inserted as a black screen video) of the same content. The reference list appears in the final installment but links in the text should take you directly to specific publications.
Sleep Like a Baby Night after Night
Ready to jump back on the highway to sleep success? With the next resource pearls, you’ll navigate through shorter pitstops to gain the care you need. If reading this material, you’re probably receiving a poor or mediocre response to CPAP, previously quit CPAP or wondering how to help someone in such predicaments.
The path forward, then, must start by convincing your doctor you are a CPAP failure case while strongly asserting your patient rights to gain the chance to try out bilevel. For some, a shorter path though more costly involves requesting a prescription from your primary care physician to purchase bilevel online or locally. Since most individuals want insurance coverage for this device, which out of pocket reaches $1,000 or more, let’s go back to the most likely “insertion point” in this obstacle course.
[N.B.: For those going straight to bilevel out of pocket, you can find tons of tips and pearls to markedly upgrade your early response to bilevel in my recent book, Life Saving Sleep, (The New Sleepy Times, 2023)].
In the beginning of this essay, we pointed out how commonly CPAP failure occurred, which means when you talk to your next sleep doctor theoretically all you would need to say is: “C’mon man! You know how many people fail CPAP. I failed CPAP. I wanna try bilevel.”
While it should be easy, it may not be so, depending upon the attitude or mental rigidity of your doctors. If it’s not easy, then use the anxiety card to explain how you cannot breathe out against higher air pressure coming in.
What happens next is variable. An open-minded doctor will listen and agree to the plan. He or she would write a prescription in nearly all cases for an auto-adjusting bilevel device, often called Auto-Bilevel, Auto-BiPAP, VPAP, VAuto, ABPAP. My personal favorites are the ResMed models of bilevel devices as we’ve found them the most dependable and as we say in medicine, “the most efficacious,” which means they work very well to treat the problem.
The prescription for bilevel goes to the DME/HME company, and as long as your doctor’s notes indicate “CPAP failure,” it’s 99% likely the insurance company approves the new bilevel. Unfortunately, approval and coverage are separate, so there’s no telling how much the insurance company pays and how much you fork over.
Still, just getting into the system, meaning you are now a bilevel user, could for the next several years provide coverage; and over time, some insurance companies will capture costs for masks, tubes, headgear, humidifiers and filters, and these costs add up. So, gaining insurance coverage may not provide immediate benefit by covering machine cost, but long-term it might help a great deal for all these supplies.
What if insurance rejects the script? They usually give a reason to which your doctor can craft a written response declaring you still need bilevel. Sometimes this appeal process, while taking too long, succeeds in establishing coverage.
What if Your Doctor Needs More Proof?
The above scenario where you got the script, the insurance accepts, and you start using BPAP is not rare. More commonly, however, you encounter a sleep doctor who seems open-minded about bilevel but with a huge caveat. You must prove you need bilevel or prove bilevel is in fact better than CPAP.
This “proof” is slippery, because one possible pathway works expeditiously in your favor while another pathway often results in an academic exercise that pushes back against your wishes. You have no control over which pathway the sleep doctor chooses.
The sleep doctor may insist you need to try bilevel in the sleep lab, so he and his staff can confirm you really need it. Sounds easy enough at first glance, but this in-lab approach could play out poorly. I’ll start with the worst-case scenario: you go to the lab, and the sleep tech sets you up to sleep, but the whole night only uses CPAP and never tries bilevel.
Why would a sleep tech perform his or her job so carelessly? Because in the mind of this tech, he or she may be worried about his or her own job in relationship to the boss’s (the sleep doctor) perspective about bilevel. If they think the sleep doc frowns on bilevel, they’ll run the whole study on CPAP and declare “we saw no signs to use bilevel.” Sadly, I am as serious as a heart attack when I say this episode plays out exactly as just described.
The inherent mindlessness of such encounters should produce outrage among patients, but they seldom get to complain about these nuanced aspects of sleep care. Now, with this worst-case scenario in mind, which to repeat is not a rare thing, we’ll offer new instructions to deal with uncooperative sleep operations.
As you recall, there are two pathways. Instead of going into the lab, you should attempt to persuade the sleep doctor to write the script because you know “if I could just try it for a month at home, I’d be so happy to come back and describe how I experienced the bilevel device compared to my previous efforts with CPAP.” Yes, I’m intentionally recapping here, because every chance you get to interject, “Look, I’m happy if you just want me to try the bilevel at home for a month and then come in for a sleep test” may eventually wear down the resistance of the sleep staff and engage them to write the script before you go to the lab.
That said, when using the in-lab option what can you do to ward off the worst-case scenario above?
The answer is a step-by-step dialogue with your sleep professionals to insure your in-lab experience goes the way you want it to go.
Final Laboratory Pathway to BPAP
To avoid the worst-case scenario, your goal is to find a way to try bilevel even though the doctor may have already turned down your request to write a script. In other words, despite the doctor demanding you accept the decision to schedule a sleep test, there are ways to at least gain a shot at “test-driving” bilevel before the in-lab night time experience. This test-drive could be just 5 or 10 minutes or as much as a half-hour up to two hours. The question is how to manipulate the situation to complete a test-drive.
Let’s be clear why a test-drive is so important. Above all, it gives you the living, breathing experience of the bilevel so you gain confidence this device could be the solution you’ve been looking for. With this increased confidence, you gain a bargaining chip in all future interactions, because you are already persuaded bilevel suits your purposes where CPAP failed. The sleep doctor or sleep staff can’t deny your experience when you say, “I like bilevel more, it’s more comfortable, it’s easier to breathe out” and so on. Last and not least, this exact point of comfort can always be compared to your bad experience with CPAP. You can vigorously point out this distinction to whomever answers the phone at your insurance carrier (or whomever calls you back 2 weeks later), should you find yourself in negotiations with them to cover your new bilevel device.
How do you make this test-drive occur? In the ideal world you request a PAP-NAP, which is exactly as it sounds, a short daytime experience with a PAP device. We devised (some say invented) this procedure in 2006 (8), which by the way we were blessed to receive the considerable assistance and guidance from our regional Medicare medical director at the time, (Dr. Lynne Hickman, 1936-2012). Dr. Hickman was very sensitive to the plight of CPAP failure cases. We explained our initial framework, requesting the use of a daytime, desensitization in the sleep lab to introduce PAP to patients with anxiety or insomnia who would not easily adapt to pressurized air. He thought it was a great idea and even clarified for us how to code the PAP-NAP for insurance reimbursement as a clinically-relevant, in-lab medical procedure.
We published data on the PAP-NAP procedure in 2008, based on 39 sleep apnea patients who at the outset adamantly refused to even consider PAP therapy. These patients also suffered from insomnia or anxiety or both, so given their initial reluctance to consider this invasive treatment, they were easily identified as high probability for CPAP failure if not CPAP rejection. Remarkably, after the short PAP-NAP (averaging ~100 minutes of exposure), 90% of the cases moved forward to the next step of completing an in-lab sleep test of which 85% went on to fill a prescription for a PAP device. Finally, at extended follow-up, 67% of those who adamantly refused to consider CPAP at the start ultimately met criteria as a regular user of the device.
Germane to our specific theme, 69% of all subjects in the protocol preferred bilevel over CPAP, which back in 2006 (while conducting the trial) was eye-opening to our sleep team and strengthened our efforts to move patients away from CPAP and onto bilevel.
Regrettably, the field of sleep medicine turned the PAP-NAP idea into an unnecessary controversy. To this day, there are a sizeable minority of sleep centers conducting PAP-NAPs or a variation compared to a majority who reject the idea. The centers who use PAP-NAPs swear by them, and their patients are most grateful. The other sleep centers choose to remain ignorant to the use of this simple procedure even though most insurance carriers seem to reimburse it.
Nonetheless, you don’t necessarily need a PAP-NAP if a shorter, less elaborate test-drive is available. You could for example step into a DME/HME office and ask the manager if they would let you try bilevel for 15 minutes. Some will proceed while others will ask for a doctor’s note recommending this step. As you would expect, some doctors write the note and others do not.
How else might you get a taste of bilevel? Simply ask your local sleep staff at your current sleep center. It’s an easy request although it is more likely to be rejected than accepted. You could also ask a friend who is currently using bilevel.
Finally, the thorniest opportunity presents at the “pre-sleep setup” on your night of sleep testing. During this period, quite commonly the sleep tech will show you different PAP masks to try. Here’s your chance to ask if you can try bilevel before lights out, because you want to feel and know the difference between CPAP and bilevel. A sensible step would confirm this instruction with your sleep doctor at scheduling. Just ask the doc to write on your order form “patient wants to try out bilevel before starting the test.”
This last step may prove the most prickly, because of so much variation in the thinking of sleep docs and sleep techs. Some readily accommodate and acknowledge, “what a great idea!” Others want all the control and declare, narrow-mindedly, “if you need bilevel, we’ll switch you during the night.”
My closing thoughts on this test-drive is not to wait until the night of the study to make the request. I have seen too many cases of sleep professionals acting anything but professional. That is, sleep doctors not willing to write out in black and white on an order form that you are guaranteed to try bilevel on the night of the study. As a result, I personally would not waste my time trying to work with such a sleep center. This patient-unfriendly attitude infects far too many centers as it relates to bilevel, so call around and find one to accommodate your needs.
Something to Sleep On
In sum, the field of sleep medicine suffers from entrenched ideas, preoccupied with an outsized belief CPAP works for everyone…if you just torture yourself long enough to get used to it. In my own personal view, notwithstanding current medical-legal standards, prescribing CPAP to those who in all likelihood would not adapt and instead are literally traumatized by their CPAP attempts, should be grounds for a medical malpractice lawsuit. Regrettably, because CPAP is the standard of care, no one could successfully litigate such a case and win. This state of affairs is unfortunate, not because I advocate lawsuits. Litigation is often mentally, physical, and spiritually sickening in more ways than usually acknowledged! However, in real world medical affairs, litigation sometimes is the only way forward to see substantive changes in what I would unconditionally view as “substandard care” or to reiterate, The Crisis of CPAP Failure.
That said, you possess a new set of instructions, and if patient by patient were to seize the opportunity to use these steps and procure bilevel devices, then through a grassroots movement we are likely to see meaningful changes sooner than later, which is why all the thought-provoking concepts you’ve learned here, I trust you’ll appreciate, are something to sleep on.
Rest Wishes!
References
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5. Krakow B, Ulibarri VA, McIver ND, Yonemoto C, Tidler A, Obando J, Foley-Shea MR, Ornelas J, Dawson S. Reversal of PAP Failure With the REPAP Protocol. Respir Care. 2017 Apr;62(4):396-408. doi: 10.4187/respcare.05032. Epub 2017 Feb 21. PMID: 28223464.
6. Krakow B, McIver ND, Ulibarri VA, Krakow J, Schrader RM. Prospective Randomized Controlled Trial on the Efficacy of Continuous Positive Airway Pressure and Adaptive Servo-Ventilation in the Treatment of Chronic Complex Insomnia. EClinicalMedicine. 2019 Aug 8;13:57-73. doi: 10.1016/j.eclinm.2019.06.011. PMID: 31517263; PMCID: PMC6734001.
7. Krakow BJ, Obando JJ, Ulibarri VA, McIver ND. Positive airway pressure adherence and subthreshold adherence in posttraumatic stress disorder patients with comorbid sleep apnea. Patient Prefer Adherence. 2017 Nov 20;11:1923-1932. doi: 10.2147/PPA.S148099. PMID: 29200833; PMCID: PMC5700760.
8. Krakow B, Ulibarri V, Melendrez D, Kikta S, Togami L, Haynes P. A daytime, abbreviated cardio-respiratory sleep study (CPT 95807-52) to acclimate insomnia patients with sleep disordered breathing to positive airway pressure (PAP-NAP). J Clin Sleep Med. 2008 Jun 15;4(3):212-22. PMID: 18595433; PMCID: PMC2546453.