A newly diagnosed apnea patient finds healthy sleep costly and treatment aids questionable
With millions of patients struggling with long delays in getting replacements for night-breathing devices recalled by their manufacturer over the machines’ potential health risks, a seasoned health journalist has reported an intriguing, personal counterpoint on the growing prevalence of the problem of sleep apnea and its routine, costly, inconvenient care.
Jay Hancock, who has been a senior correspondent for the independent, nonpartisan Kaiser Health News service (KHN) for a decade and has reported on health care, business, finance, and the U.S. State Department for the Baltimore Sun and the Virginian Pilot, penned his piece in admitted self-interest. That’s because he suffered bouts of drowsiness during the day and his wife told him he snored.
He decided to undergo exams to see if he had sleep disorders. Tests gave him a diagnosis of moderate apnea. Because of his journalistic background, he wrote that he decided he needed to learn more, reporting:
“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.”
Hancock found that the slightest suggestion of problems sleeping can cause a cascade of tests and procedures to be ordered for patients:
“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.)”
Hancock said his dive into apnea testing and treatment triggered his journalistic curiosity about the burgeoning industry specializing in sleep care, a business about which he reported this:
“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.”
If the author wasn’t already feeling wobblier about his sleep condition and all the folks lined up ready to help him with it — for a chunk of dough — he also learned more about the disorder itself, reporting:
“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 … [But here is] 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.”
While citing a list of other research on apnea and skeptical of the dire numbers often thrown around about it, Hancock reported that he found himself persuaded by the evidence about the condition and harms it can be linked to, though he also reported that a real slice of patients have sleep issues due to the noise or inconvenience of the CPAP breathing assistance device and its masks and hoses.
It is not a spoiler alert, and the reporter takes care to emphasize that he is quoting experts and studies. But Hancock also reported that sleep experts have found that a chunk of apnea patients, with training, can at least avoid getting hooked up at night to required, clunky, and costly CPAP devices. They can find big relief to their condition by changing the way they sleep. They learn to sleep on their side, in a “positional therapy.” Their shift can be facilitated by repeated night wearing of sleepwear that has a tennis ball taped so it falls in the middle of patients’ backs.
In my practice, I not only see the harms that patients suffer while seeking medical services, but also the damage that can be inflicted on them by bankrupting and dangerous drugs as well as defective and dangerous products, notably of the medical kind. Patients also can see clear benefits by staying healthy and far away from the U.S. health care system. It is, according to research conducted in pre-coronavirus pandemic times, fraught with medical error, preventable hospital acquired illnesses and deaths, and misdiagnoses.
Patients too often are staggered by the costs of medical devices, and they deserve greater protection from their harms. The federal Food and Drug Administration has prodded Philips, a giant maker of CPAP devices, to speed up and improve its recall of the breathing devices that so many patients have come to rely on. Despite the federal regulator pressure, though, the maker has continued to infuriate its sizable CPAP customer base with its glacial recall and soggy communications.
Sleep is a major part of healthful living and we have much work to do to ensure that even this blessed, natural rest is safe, affordable, accessible, efficient, and excellent.