JACKSONVILLE, Fla. — An Action News Jax investigation finds health laws don't always apply to medical device providers or manufacturers who store private information, making people including Action News Jax reporter Ben Becker, choose between their health or privacy in the bedroom.
“Am I more annoying when I am awake or when I am sleeping?” Ben asked his wife Suzie.
“Right this minute it's hard for me to decide,” Suzie said.
“How would you describe the sound of my snoring?” Ben asked.
“It’s like a tractor,” Suzie shot back.
“How scary is it?" Ben inquired.
“Terrifying” Suzie admitted. “I find myself shaking you awake after you stopped breathing for a few seconds."
What Ben discovered is he is one of 20 million Americans who have been diagnosed with sleep apnea, and now uses a CPAP – short for continuous positive airway pressure.
The machine streams warm air into Becker’s nose and helps him breathe.
According to the American Sleep Apnea Association 38,000 people in the United States die each year from heart disease with sleep apnea as a complicating factor.
Becker’s wife isn't the only one tracking his sleep.
The CPAP also has a modem, which shares his personal information with his doctor, who is required to provide it to Becker’s insurance company, Aetna and that's not all.
"It has to go to a third party before it goes to your provider," says Dr. Sunil Joshi Director of the Duval County Medical Society Foundation.
The health data privacy law known as HIPAA doesn't always keep the manufacturer or provider of CPAP machines from sharing medical information it gathers.
Joshi worries that data could be used to discriminate against patients or even raise their costs.
“They shouldn't have to keep searching for more information about your health because that is an invasion into your privacy," Joshi said.
It's not just CPAP machines.
The same issue applies to home blood pressure monitoring equipment, insertable heart monitors and blood glucose meters.
Philips Respronics, the maker of Becker’s CPAP, sent him a statement about sharing information, that reads in part:
Becker learned HIPPA does apply to business associates of covered entities that provide apps and devices.
He asked Philips to provide its business associate agreement and is waiting to hear back.
Aetna told Becker they only track his CPAP usage to comply with federal law as it relates to covering the device.
But experts say that law is only intended for those with Medicaid or Medicare and that insurance companies arbitrarily do not make a distinction.
You do have the option of opting out of using a modem, but you have to bring the SD card into the doctor’s office three times in the first 90 days of having a CPAP or insurance may not pay for it.
As for Becker’s sleeping, his wife says regardless of whether the CPAP machine is a sleep aid or surveillance device, she no longer has to suffer in silence.
“Would you say it's a good first step?,” Ben asked.
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