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 through the 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 breathe.
As a journalist — and one horrified by the diagnosis — I set out to do my own research. After weeks of testing and interviewing experts, I came to two important conclusions.
First, I had moderate shortness of breath, if that, and it could be treated without the elaborate machines, mouthpieces, or other devices that the specialists consulted on my care.
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 expensive diagnostic studies, equipment sales, and questionable treatments. I was on the conveyor belt.
It all started with a longing for answers: I was feeling drowsy during the day and my wife told me I was snoring. Both can mean obstructive sleep apnea. With obstructive sleep apnea, the mouth and throat relax while a person is unconscious, sometimes blocking or narrowing the airway. It disturbs breathing as well as sleep. Without treatment, disruption of oxygen flow can increase the risk of developing certain cardiovascular diseases.
So I contacted a sleep-therapy center, and the doctors gave me an at-home test ($365). Two weeks later, they told me I had “high-moderate” sleep apnea and would need to get a continuous positive airway pressure, or CPAP, machine at a cost of about $600.
Although I hoped to get the equipment and adjust the settings to see what works best, my doctors said I would need to come to the sleep lab for an overnight test ($1,900) to “titrate” to their optimal CPAP air pressure.
“How do you treat central sleep apnea?” After the first night’s stay, I got worried and asked the technician. He said something about an ASV (Adaptive Servo-Ventilation) machine ($4,000). And an expensive lab sleepover wasn’t enough, he said. I will have to come back for another.
(Most of the procedures and devices mentioned in this article are or were 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 health care business, I found that my cascade of expensive tests motivated me more than my concerns about my health.
The American Academy of Sleep Medicine, or AASM, a nonprofit organization based in Chicago, defines 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 is relied on by doctors everywhere to diagnose and classify diseases.
But behind that effort lies considerable conflict of interest. Like much of US health care, sleep medicine has become a thriving industry. AASM funds its operations through payments from CPAP machine manufacturers and other companies that stand to profit from expensive treatments and broad 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 severe daytime sleepiness.
Other sponsors include an anti-insomnia drug maker; Another company with a narcolepsy drug; Fisher & Paykel Healthcare, which makes CPAP machines and masks; and Inspire Medical Systems, a maker of heavily advertised surgical implants, spending tens of thousands of dollars, to treat apnea.
Corporate sponsor for Sleep 2022, a convention AASM held in Charlotte, North Carolina along with other professional societies, many of those companies include Philips Respironics and ResMed, two of the largest CPAP machine manufacturers.
In a statement, AASM spokeswoman Jennifer Gibson said a conflict-of-interest policy and a non-interference pledge from industry funds protect the integrity of the academy’s work. Industry grants account for about $170,000 of AASM’s annual revenue of about $15 million, he said. Other revenues come from educational materials and membership and accreditation fees.
Here’s what else I found. Almost everyone breathes irregularly at night, especially during REM sleep, characterized by rapid eye movements and dreaming. Blood oxygen levels also fluctuate slightly.
But recent European research has shown that standards under the International Classification of Sleep Disorders would destroy a large portion of the general population for a diagnosis of sleep apnea — whether or not people complain of daytime fatigue or other sleep problems.
A study in the Swiss city of Lausanne found that 50% of local men and 23% of women aged 40 and over tested positive for sleep apnea under such criteria.
Such disease rates are “extraordinarily high,” “astronomical” and “unimaginable,” Dr. Dirk Pevernaghi, a scientist at Ghent University Hospital in Belgium, wrote with colleagues in a comprehensive study two years ago in the Journal of Sleep Research.
“At this point, there is no real evidence to support the criteria put forward for the diagnosis and severity of obstructive sleep apnea,” he said in an interview.
Similarly, a 2016 Icelandic study found 19% of middle-aged subjects had moderate-to-severe “apnea” under an International Classification of Sleep Disorders definition even though many had no sleepiness.
“Most of them were really surprised,” said Erna Seif Arnardottir, who led the study and is managing a large European program to refine apnea detection and treatment.
Still, the official AASM journal recommends very broad screening for sleep apnea, to find patients who have what it defines as the disorder. Everyone age 18 and older with diabetes, obesity, untreated high blood pressure, or heart disease should be screened for apnea every year — even if they never complain of sleep problems, the group says.
The AASM “continually evaluates the definitions, criteria and recommendations used to diagnose sleep apnea and other sleep disorders,” Gibson said in the statement. Meanwhile, routine screening by primary care doctors is “a simple way” to gauge whether a high-risk patient may have obstructive sleep apnea, the statement said.
The US Preventive Services Task Force, an authoritative body that reviews the effectiveness of preventive care, took a conservative view, as did European researchers, concluding there was “insufficient” evidence to support widespread screening in asymptomatic patients.
Many insurers refuse to pay for CPAP machines and other treatments prescribed for people on the outer edge of the AASM’s apnea definition. But ASM is pushing them to come.
After all my reporting, I have concluded that my apnea is real, albeit moderate. My worrisome reading in the lab overnight—quickly diagnosed as central sleep apnea—was a byproduct of the testing equipment. It is a well-described phenomenon that occurs in 5% to 15% of patients.
And when I took a closer look at the diagnostic test results at home, I had an epiphany: My overall score was 26 breathlessness and decreased blood oxygen levels, on average, per hour—enough to put me in the “high” moderate for apnea category. But when I looked at the data sorted by sleep position, 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 respirations. When I lay on my side, there was very little.
Now I sleep on my side. I snore less. I wake up refreshed. I am not drowsy during the day.
None of my specialists mentioned turning to me — known in medical parlance as “positional therapy” — even though the intervention is recognized as effective by many researchers. Sleeping on the back can cause snoring and obstruction, especially as the throat muscles loosen as people age.
“Position patients … can sleep in the lateral position and sleep quite well,” said Ari Oksenberg, a sleep researcher at Lowenstein Hospital in Israel.
But that’s not easy to find in the official AASM treatment guidelines, which instead go to money-making options like CPAP machines, surgery, central apnea, and mouth appliances.
The AASM’s guidelines on “other” treatments dealing with sleep apnea get little more than a few paragraphs in a small box on a long and complicated decision chart.
A third or more of patients wear CPAP for only a few hours a night or stop using it. It turns out that people don’t like machines in their beds.
“Positional therapy is an effective treatment option for some patients,” says the AASM’s Gibson. But he said there were concerns about whether patients would sleep on their side long-term and whether trying to stay in one position could disrupt sleep.
It is true that side sleeping does not benefit everyone. 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 widely overlooked option.
“Are we missing an easy treatment for most adult sleep apnea patients?” 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.
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