Severe sleep apnea diagnosis panics reporter until he finds a simple, no-cost solution

By Jay Hancock | Kaiser Health News

I woke up in a strange bedroom with 24 electrodes glued all over my body and a plastic mask attached to a hose covering my face.

The lab technician who watched me all night via video feed told me that I had “wicked sleep apnea” and that it was “central sleep apnea” — a type that originates in the brain and fails to tell the muscles to inhale.

As a journalist — and one terrified by the diagnosis — I set out to do my own research. After a few weeks of sleuthing and interviewing experts, I reached two important conclusions.

First, I had moderate apnea, if that, and it could be treated without the elaborate machines, mouthpieces, or other devices that specialists who had consulted on my care were talking about.

Second, the American health care system has joined with commercial partners to define a medical condition — in this case, sleep apnea — in a way that allows both parties to generate revenue from a multitude of pricey diagnostic studies, equipment sales, and questionable treatments. I was on a conveyor belt.

It all began with a desire for answers: I had been feeling drowsy during the day, and my wife told me I snored. Both can mean obstructive sleep apnea. With obstructive sleep apnea, the mouth and throat relax when a person is unconscious, sometimes blocking or narrowing the airway. That interrupts breathing, as well as sleep. Without treatment, the resulting disruption in oxygen flow might increase the risk of developing certain cardiovascular diseases.

So I contacted a sleep-treatment center, and doctors gave me an at-home test ($365). Two weeks later, they told me I had “high-moderate” sleep apnea and needed to acquire a continuous positive airway pressure, or CPAP, machine, at a cost of about $600.

Though I had hoped to get the equipment and adjust the settings to see what worked best, my doctors said I had to come to the sleep lab for an overnight test ($1,900) to have them “titrate” the optimal CPAP air pressure.

“How do you treat central sleep apnea?” I worriedly asked the technician after that first overnight stay. She said something about an ASV (adaptive servo-ventilation) machine ($4,000). And one pricey lab sleepover wasn’t enough, she said. I needed to come back for another.

(Most procedures and devices mentioned in this article were covered or would have been covered by insurance — in my case, Medicare, plus a supplemental plan. Unnecessary care is a big reason Americans’ insurance costs — premiums, copays, and deductibles — tend to rise year after year.)

As a journalist who spent years covering the business of health care, I found there was more motivating my expensive testing cascade than concerns about my health.

The American Academy of Sleep Medicine, or AASM, a nonprofit based near Chicago, decides what is sleep apnea and how to treat it. Working with sleep societies around the world, it publishes the International Classification of Sleep Disorders, relied on by doctors everywhere to diagnose and categorize disease.

But behind that effort lie considerable conflicts of interest. Like so much of U.S. health care, sleep medicine turns out to be a thriving industry. AASM finances its operations in part with payments from CPAP machine manufacturers and other companies that stand to profit from expensive treatments and expansive definitions of apnea and other sleep disorders.

Zoll Itamar, which makes the at-home testing device I used, as well as implantable nerve-stimulation hardware for central sleep apnea, is a $60,000, “platinum” partner in AASM’s Industry Engagement Program. So is Avadel Pharmaceuticals, which is testing a drug to treat narcolepsy, characterized by intense daytime sleepiness.

Other sponsors include the maker of an anti-insomnia drug; another company with a narcolepsy drug; Fisher & Paykel Healthcare, which makes CPAP machines and masks; and Inspire Medical Systems, maker of a heavily advertised surgical implant, costing tens of thousands of dollars, to treat apnea.

Corporate sponsors for Sleep 2022, a convention AASM put on in Charlotte, North Carolina, with other professional societies, included many of those companies, plus Philips Respironics and ResMed, two of the biggest CPAP machine makers.

In a statement, AASM spokesperson Jennifer Gibson said a conflict-of-interest policy and a non-interference pledge from industry funders protect the integrity of the academy’s work. Industry donations account for about $170,000 of AASM’s annual revenue of about $15 million, she said. Other revenue comes from educational materials and membership and accreditation fees.

Here’s what else I found. Almost everybody breathes irregularly sometime at night, especially during REM sleep, characterized by rapid eye movement and dreams. Blood oxygen levels also fluctuate slightly.

But recent European studies have shown that standards under the International Classification of Sleep Disorders would doom huge portions of the general population to a sleep apnea diagnosis — whether or not people had complaints of daytime tiredness or other sleep problems.

A study in the Swiss city of Lausanne showed that 50% of local men and 23% of the women 40 or older were positive for sleep apnea under such criteria.

Such rates of disease are “extraordinarily high,” “astronomical,” and “implausible,” Dr. Dirk Pevernagie, a scientist at Belgium’s Ghent University Hospital, wrote with colleagues two years ago in a comprehensive study in the Journal of Sleep Research.

“Right now, there is no real evidence for the criteria that have been put forward to diagnose obstructive sleep apnea and rate its severity,” he said in an interview.

Likewise, 19% of middle-aged subjects in a 2016 Icelandic study appeared to have moderate to severe “apnea” under one definition in the International Classification of Sleep Disorders even though many reported no drowsiness.

“Most of them were really surprised,” said Erna Sif Arnardóttir, who led the study and is running a large European program to refine detection and treatment of apnea.

Nevertheless, the official AASM journal recommends extremely broad screening for sleep apnea, looking for patients who have what it defines as illness. Everybody 18 and older should be screened every year for apnea if they have diabetes, obesity, untreated high blood pressure, or heart disease — even if they have never complained about sleep problems, the group says.

AASM “continually evaluates the definitions, criteria and recommendations used in the identification of sleep apnea and other sleep disorders,” Gibson said in the statement. Meanwhile, routine screening by primary care doctors “is a simple way” of gauging whether a high-risk patient may have obstructive sleep apnea, the statement said.

The U.S. Preventive Services Task Force, an authoritative body that reviews the effectiveness of preventive care, takes a conservative view, more like that of the European researchers, concluding there is “insufficient” evidence to support widespread screening among patients with no symptoms.

Many insurers refuse to pay for CPAP machines and other treatments prescribed for people at the outer edges of the AASM’s apnea definition. But AASM is pressuring them to come around.

After all my reporting, I concluded that my apnea is real, though moderate. My alarming reading in the overnight lab — diagnosed quickly as central sleep apnea — was a byproduct of the testing machinery itself. That’s a well-described phenomenon that occurs in 5% to 15% of patients.

And when I looked closely at the results of my at-home diagnostic test, I had an epiphany: My overall score was 26 breathing interruptions and blood-oxygen level declines, on average, per hour — enough to put me in the “high-moderate” category for apnea. But when I looked at the data sorted according to sleeping positions, I saw that I scored much better when I slept on my side: only 10 interruptions in an hour.

So I did a little experiment: I bought a $25 pulse oximeter with a smartphone app that records oxygen dips and breathing interruptions. When I slept on my side, there were hardly any.

Now I sleep on my side. I snore less. I wake up refreshed. I’m not daytime drowsy.

None of my specialists mentioned turning on to my side — known in medical parlance as “positional therapy” — though the intervention is recognized as effective by many researchers. Sleeping on one’s back contributes to snoring and blockages, especially as people age and the muscles in the throat become looser.

“Positional patients … can sleep in the lateral position and sleep quite well,” said Arie Oksenberg, a sleep researcher formerly at Loewenstein Hospital in Israel.

But it’s not easy to find this in the official AASM treatment guidelines, which instead go right to the money-making options like CPAP machines, surgery, central apnea, and mouth appliances.

Dealing with apnea by shifting slightly in bed gets little more than a couple of paragraphs in AASM’s guideline on “other” treatments and a little box on a long and complex decision chart.

A third or more of patients wear CPAPs only a few hours a night or stop using them. It turns out people don’t like machines in their beds.

“Positional therapy is an effective treatment option for some patients,” said the AASM’s Gibson. But she said there are concerns about whether patients will sleep on their sides long term and whether trying to stay in one position might cause sleep interruptions itself.

It’s true that side-sleeping doesn’t help everybody. And it often takes practice. (Some people tape a tennis ball to their pajamas to keep them off their backs.) Even conservative sleep doctors say CPAP machines are the best solution for many patients.

But there is a largely overlooked alternative.

“Are we missing a simple treatment for most adult sleep apnea patients?” was the name of a 2013 paper that Oksenberg and a colleague wrote about positional therapy.

In my case, the answer was “yes.”

Jay Hancock is a former KHN senior correspondent.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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