People with sleep apnea frustrated with CPAP machine reminder

A voluntary recall Millions of CPAP breathing machines, used primarily to treat sleep apnea, many users wonder if they inhaled carcinogenic toxins while sleeping.

At least 25 million American adults suffer from sleep apnea, a potentially serious sleep disorder in which breathing stops and starts again repeatedly throughout the night, preventing them from sleeping well. A continuous positive airway pressure, or CPAP machine, pushes a constant flow of air through a user’s nose and mouth, keeping the airways open.

But CPAP users are now faced with the choice of using a machine that the company says could actually be harmful to their health – or without it, which means they won’t have a good night’s sleep. sleep.

In June, manufacturer Philips voluntarily recalled millions of its popular DreamStation CPAP devices due to possible health effects.

Philips said the sound-absorbing foam used in the DreamStation “could degrade into particles” and “gassing… chemicals”. The FDA says inhaling these could “result in serious injury that could be life threatening” or “cause permanent impairment” ranging from irritation to asthma … or even “toxic or carcinogenic effects” .

“It caused a lot of anxiety,” said Dr. David Claman, medical director of the Sleep Disorders Center at the University of California at San Francisco. He says many of his patients have recalled machines.

Anna Werner, CBS News consumer survey correspondent, asked, “What are you telling your patients to do?

“I advise the more severe patients to stay on CPAP. And then I am to a certain extent in the milder cases, I let them choose, because I also feel uncomfortable saying that I cannot. know it’s safe. ”

Werner has heard from frustrated people with sleep apnea, including James Colbert, who described his life 13 years ago before he started using a CPAP machine (including, for the past two years, the Philips DreamStation) : “There were times when I would literally fall asleep in the middle of a sentence talking to someone because I was so exhausted that I didn’t go to sleep the night before.”

Since using CPAP Colbert said, “I woke up refreshed and could go through the whole day with, you know, a ton of energy that I needed for work or, you know, to get through. time with my family. ”

Jozefa Kozyra, of Lehighton, Pa., Relied on her DreamStation to sleep so she could provide 24-hour care to her son, Kamil, who has muscular dystrophy.

Kamil told Werner, “She needs to wash, dress, feed me and other exercises to do during the day.”

But since the recall, she said her doctor advised her not to use the machine – and she fights without it. “I am very tired, I am very slow,” said Jozefa.

Werner asked, “How long do you sleep without the machine?

“When I don’t have a machine now, two hours, three hours,” she replied.

Her son said Medicare denied her a replacement machine and she couldn’t afford to spend hundreds of dollars to buy a new one.

Kamil said: “She called her insurance and Medicare a few times, and they say, because it’s not been five years, even though it’s not her fault at all, they’re not willing to pay for one. new machine. “

Philips now says it will “replace or repair the devices” … “within about 12 months” after the FDA approves a solution.

It is not known how many patients experienced health effects; the company said it received complaints on 0.03% of its machines in 2020, including some sent by the FDA about “the presence of black debris / particles” in some machines.

Philips said its tests revealed “possible risks,” which begs questions for Dr Claman: “Is this just the tip of the iceberg, or is that all there is?”

As for James Colbert, he said the risks of not wearing the machine outweigh the possible unknown health effects, so he continues to use his.

“I can’t afford not to use it because I would get so little sleep,” Colbert said. “And if I slept without it, I would stop breathing so many times during the night.”

But he has a message for Philips: “To tell me it could take up to a year? It’s a year that I could put myself in danger,” Colbert said. “People just can’t afford to wait 12 months for a resolution.”

Colbert has also joined a lawsuit against Philips, he said, to push them to act faster on the issue.

Philips did not respond to CBS News’ request for comment on the lawsuit. (In April, Philips released a new machine, the DreamStation 2, which it says is unaffected by this recall.)

Connecticut Senator Richard Blumenthal is demanding answers on how many people are affected by the recall and what Philips is doing to help them.

There is another potential problem that can come into play here: Many people with the machines use an ozone cleaning system to clean them, which can degrade the noise canceling foam more quickly.