Some experts question sleep apnea diagnoses
I woke up in a strange bedroom with 24 electrodes glued all over my body and a mask attached to a hose covering my face.
The lab tech who watched me all night via video feed told me 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 terrified by the diagnosis, I set out to do research. After a few weeks of sleuthing, I reached two conclusions.
First, I had moderate apnea, and it could be treated without the machines or mouthpieces that specialists touted.
Second, the American health care system has joined with commercial partners to define sleep apnea in a way that allows both parties to generate revenue from pricey diagnostic studies, equipment sales and 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, in which the mouth and throat relax during sleep, blocking the airway. That interrupts breathing as well as sleep. Without treatment, the disruption in oxygen flow might increase the risk of developing cardiovascular diseases.
I contacted a sleep center, and doctors gave me an at-home test ($365). Later, they concluded I had “high-moderate” sleep apnea and needed a continuous positive airway pressure, or CPAP, machine, at a cost of about $600. My doctors also 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
asked the technician after that first overnight stay. She said something about an ASV (adaptive servo-ventilation) machine ($4,000).
The nonprofit American Academy of Sleep Medicine decides what sleep apnea is and how to treat it. Working with sleep societies around the world, it publishes the International Classification of Sleep Disorders, which doctors use to diagnose disease.
But behind that effort lie conflicts of interest. Sleep medicine is a thriving industry. AASM finances its operations in part with payments from CPAP machine manufacturers and other companies that profit from costly treatments and expansive definitions of 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 partner with AASM. So is Avadel Pharmaceuticals, which is testing a drug to treat narcolepsy, another sleep disorder.
Other sponsors include the maker of an anti-insomnia drug; Fisher & Paykel Healthcare, which makes CPAP machines; and Inspire Medical Systems, maker of a surgical implant that costs tens of thousands of dollars to treat apnea.
In a statement, AASM spokesperson Jennifer Gibson said a conflict-ofinterest 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.
We all sometimes breathes irregularly at night, especially during REM sleep. 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 population to a sleep apnea diagnosis — whether or not people had sleep problems.
A Swiss study showed that 50% of men and 23% of women 40 or older were positive for sleep apnea under such criteria.
Such rates of disease are “extraordinarily high” and “implausible,” Dr. Dirk Pevernagie, a scientist at Belgium’s Ghent University Hospital, wrote with colleagues in a comprehensive 2020 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.
Likewise, 19% of middleaged subjects in a 2016 Icelandic study appeared to have moderate to severe “apnea” under one definition in the International Classification of Sleep Disorders, though many reported no drowsiness.
Nevertheless, the AASM recommends broad screening for sleep apnea. People 18 and older should be screened every year if they have diabetes, obesity, untreated high blood pressure or heart disease, even if they don’t have 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. Routine screening “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, which reviews the effectiveness of preventive care, takes a conservative view, more like that of the European researchers, concluding there is “insufficient” evidence to support such widespread screening.
My apnea is real, though moderate. My reading in the lab, diagnosed as central sleep apnea, was a byproduct of the testing machinery itself. That’s a phenomenon that occurs in 5% to 15% of patients.
When I looked at the results of my at-home diagnostic test, 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.
I bought a $25 pulse oximeter with an app that records oxygen dips and breathing interruptions. When I slept on my side, there were hardly any.
With side-sleeping, I snore less. I wake up refreshed. I’m not drowsy during the day.
None of my specialists mentioned turning to my side — known as “positional therapy” — though researchers say the intervention is effective. Sleeping on one’s back contributes to snoring and blockages, especially as people age.
“Positional patients ... can sleep in the lateral position and sleep quite well,” said Arie Oksenberg, a sleep researcher formerly at Loewenstein Hospital in Israel.
“Positional therapy is an effective treatment option for some patients,” said 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 takes practice. (Some tape a tennis ball to their pajamas to keep them off their backs.) Even conservative sleep doctors say CPAP machines are the best solution.
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.”