Whoa, this medical device is spying on me. In my sleep. So my insurer can deny me coverage.

Dan: Eric Umansky snores really, really loud. He’s got sleep apnea. That’s a condition where your throat closes up while you sleep. It makes your breathing actually stop and start and it causes snoring.

It’s this really annoying thing. It means you’re tired, turns out not to be the best for your health. Yeah, it can contribute to high blood pressure, heart problems, diabetes, also. Snoring not great for a marriage. Eric has had to spend some nights on the couch. Fortunately for him, there is a machine that treats sleep apnea.

It’s not very complicated. It just basically blows air in your face. It’s called CPAP for continuous positive airway pressure.

Eric Umansky: It just like, literally just like blows the air. So, uh, your

Dan: airways stay open. He’s had one for like 10 years and he thought the mask was wearing out.

Eric Umansky: Uh, maybe it was getting old or, uh.

Uh, things were changing, but my wife actually was constantly, um, complaining that, uh, I was snoring through my mask.

Dan: He called his doctor, doctor, said, could be the mask. We’ll have the supplier send you a new one, and we may need to change the settings on the machine. And that. Used to be a real pain. You had to wait for a technician to come to your house.

It’s like the cable guy coming by. Are you gonna be home between 12 and four? Whatever? And they said, listen, there’s this new thing we can do. You’re gonna love it. We’re gonna have the supplier send you a little cellular transmitter that plugs into the machine and then we

Eric Umansky: can update your machine remotely.

We’re never gonna have to send like, you know, rod, the cable guy over to change your settings. And I was like, well, that’s awesome.

Dan: So great transmitter arrives a wireless modem. Eric plugs it in. But he doesn’t get the mask. It’s supposed to come in the mail, but it doesn’t.

Eric Umansky: So I call them up and I say, listen, what’s up?

I didn’t get the stuff that, uh, is on my doctor’s prescription. And they said, oh yeah. Um, well that’s because you haven’t been compliant. And I was like, well, wait, what? And they said. Yeah, well, our records show here that you only use the machine for three hours on Tuesday and for four hours or some such on Wednesday.

And I was like, am I allowed to swear on this, uh, podcast? I was like, what? What the fuck are you talking about?

And they were like, well, yeah, you know, our, um, the wireless modem that we sent you sends back data every night on your sleep. And what we’re seeing is you’re not using the equipment as needed. So the insurance company’s clearly gonna reject this claim. My head basically exploded and I was like, so let me get this straight.

You guys are spying on me without telling me, right. There was no disclosure. You are in turn using that to deny me medical benefits that my doctor says I need and that the reason I can’t use the machine is because I need this thing that, that you guys aren’t giving me. And the Bay one was basically like, yeah, that’s right.

Dan: This is an arm and a leg. A show about the cost of health here. I’m Dan Weissman, and here is something, the person at the other end of that phone call did not know about Eric Yuki. He’s a journalist, he’s an editor at ProPublica that’s a nonprofit newsroom that specializes in investigative reporting. So he knows where to find a reporter like Marshall Allen who covers healthcare, like you know, basically down the hall.

Eric Umansky: And so I went to the office and I was like. Hey, Marshall, I think, I think I got a

Dan: story. And Marshall, what did you say when you heard this from Eric?

Marshall Allen: Well, I mean, I was immediately interested. I was actually already working on a story about CPAP machines, so

Dan: you were like, you don’t say. Marshall already had a good example or two with CPAP machines and Eric’s story put ’em over the top, especially with the privacy angle.

Marshall Allen: I had also done some previous stories about how health insurers are teaming up with data brokers to. Gather every bit of personal information they can find about patients. These are non-medical things, things like the zip code of the home that you live in and your level of education and the purchases you make online.

And they’re using it to score you and rank you based on how much they predict you will cost them to cover. And then they’re exploring ways to raise your rates based on this non-medical information. So this is part of a

Dan: bigger, more insidious trend where insurance companies are looking for information they can use against us.

Marshall Allen: It’s valuable information to the insurance company. If you don’t sleep at night or if you have a health condition that could cause you to cost more, and they could use that information it 10 years from now, 15 years from now, label you right now as a higher health cost.

Dan: Right now, the Affordable Care Act provides some protections in a lot of cases from insurance companies using this kind of data to raise your premium.

But that’s right now laws get changed all the time.

 Marshall Allen: Yeah. I mean, Trump’s been trying to tear down the Affordable Care Act and so that that information could be used down the road.

Dan: Marshall and Eric say there is also a simpler reason why the insurance company might wanna know if you’re actually using the machine, which is.

 Marshall Allen: A lot of people don’t you? And you can imagine learning to sleep with a mask on your face as it’s pumping air into your lungs. It can be a little disruptive to someone’s nighttime routine, and the insurance company

Dan: doesn’t wanna pay for a machine or supplies that you’re not even using. So a lot of insurance companies don’t pay to buy one of these machines until you’ve been using it.

They require that you rent it for a while first, and they want proof that you’re using it. That is ostensibly what this data is for, and that sounds like it. Could be reasonable, a trial period, but in addition to all the creepy privacy stuff. It can add up to just a straightforward ripoff. Marshall talked with a guy whose insurance company wanted him to rent his CPAP machine for 15 months and he had a high deductible, so he’d be paying all of it and 15 months of rental payments added up to three times the cost of the machine.

 Marshall Allen: So he very reasonably explained I would like to pay. A fair price, the retail price. In fact, I’m paying every dollar of this. You can’t make me pay more than I should be paying for this device.

Dan: They were like, oh, I think we can, but he was a lawyer, so he was like, oh yeah. He filed a lawsuit in small claims court

Marshall Allen: and he said within days he had a call from the durable medical equipment supply company offering to negotiate with him to give him what he wanted, which was just to pay a fair retail price for the machine.

Marshall Allen. Loves this story. The little guy won. 

Dan: Marshall Allen. Loves this story. The little guy won. I’m like, yeah, but that little guy was a lawyer.

 Marshall Allen: Definitely, definitely. But I mean, here’s, here’s what’s interesting. So I, I have to go down a little rabbit trail here,

Dan: and Marshall Allen tells me a story from his past, from when he was a little guy.

That’s right. After this,

An Arm and a Leg is a co-production of Public Road Productions and Kaiser Health News, a nonprofit newsroom that covers healthcare in America.

Kaiser Health News is not affiliated with a giant healthcare provider, Kaiser Permanente. We’ll have a little more on them at the end of this episode, so. Here is Marshall Allen’s story.

 Marshall Allen: So when I was 16 years old, um, I worked for this dinner theater in Golden Colorado where I grew up, and uh, I was the meat carver.

He cut up a giant roast beef every night. One day I show up for work and they’ve closed down the business. They owed me like three weeks of pay. The guy had closed the place without paying us and said, there’s no money. We shut down the business. We can’t afford to pay you. You’re outta luck. Well, we were all.

Pretty angry about that. We were really angry because they had opened a sister dinner theater under the same company, umbrella across town, and we all knew that, and we were like, well, if you can afford to keep your other place open, you can afford to pay us. And they said, sorry kids, you’re outta luck.

Marshall goes home, tells his mom what’s going on, and my mom tells me, you should sue him. I’m like, mom, what do you mean I can barely drive? How can I sue the guy? She goes, you should take him to small claims court. So lo and behold. I go down, I fill out the paperwork. It’s a few paragraphs. It’s easy to fill out the paperwork in small claims court.

I fill out the paperwork and turn in like 10 bucks at the time or whatever it costs. It’s not that expensive to file one of these cases, and I get a notice in the mail like six weeks later. And I have a court date and I’m like geared up for this big Perry Mason moment. Perry Mason was a lawyer on this super old TV show, courtroom drama, but this wasn’t a courtroom, it’s more like a conference room and there’s some administrative hearing judge in there.

And lo and behold, the owner of the company and his attorney had to show up in court there with me and I thought we’d have a big argument. All the administrative judge did is he read my few paragraphs on the little thing I had written up and he looks over at the owner and he goes, is what this kid’s saying true.

And the owner’s like, well, yeah. And the judge is like, give this kid his money. And I was like, this is amazing. You know what? Maybe the court system does actually work every now and then. Maybe every now and then the little guy can win.

Dan: Apparently a 16-year-old punk can just go fill out a form and make a 16-year-old Marshall Allen. 

Marshall Allen: So you know, you, I was maybe more assertive than most children. I will say that.

Dan: Okay. All that is really, really cool. And by the way, Marshall Allen and I are both really interested in stories like this. If you have taken your insurance company or provider to small claims court, or if you are thinking of giving it a shot, please get in touch.

Meanwhile, not everything is so black and white. We don’t always have an easy, bad guy to fight, just this worry that we might be getting taken, like when they’re collecting information about how we sleep. And in fact, the week I talked with Marshall and Eric, I got a CPA machine. ’cause like Eric, I, I snore really loud and it has driven my wife nuts for years.

And it turns out I’ve got sleep apnea like pretty bad. But having read Marshall’s story, I kind of had my guard up through the whole process, which was awkward. My doctor was super nice and she let me record some of our conversation.

Doctor: We have the software to download the data from those machines. Okay. So we can access it so we know what you’re doing at night.

Dan: Yeah, yeah.

Doctor: No, that’s good. It’s not a bad thing. It’s good.

Dan: Uh, I’m doing a story actually with these CTAP machines. Oh. And these people from ProPublica. Did this story, they were like, my CP machine is spying on me.

Doctor: Yeah. Unfortunately, many insurers Yeah. Want that data from us. Yeah. To show that you’re using it.

Right. Because if you’re not, to them, it’s a complete waste of time and money to give you a a $2,000 machine that you stick in a closet. Wow. So they want proof of use. Yeah, and that’s what that’s for. But more importantly, it’s actually for you too, because what we find is that data, when people have access to it and they can see what they’re doing, it really makes people use it better.

Now is somebody sitting here and looking at your data day after day? Absolutely not. We don’t have the time to do that. Other than that, nobody really cares. We are not visually seeing anything that’s going on. All we’re looking at is breathing patterns and apnea numbers. I don’t know who else is interested in that, but, uh, that’s what we, we are interested in.

Dan: Okay. I like her a lot, and my wife and I are sick of taking turns, sleeping on the couch with all the snoring. Honestly, that woman is a saint. So I went to get myself a machine and I asked Marshall Allen for some advice before I went and picked it up.

 Marshall Allen: Ask the insurance company to tell you, once you’ve confirmed my compliance with use of the device, uh, you’re gonna destroy the data, right?

It’s not gonna remain on your servers. I mean, why would you need it? You just need it for compliance.

Dan: Yeah. Honestly, I have not done that yet. Just like I always accept the terms of service on those popups without reading anything. I think Eric Kansky knows exactly what I’m talking about.

Eric Umansky: How much do I really give a shit?

How dedicated really am I to this tiny portion of my life? Frankly, I don’t wanna be very dedicated. Right. It’s like a big pain in my ass. We are either, you know, forced to, um, go all in. Yeah. And, you know, exert lots of time and kind of emotional labor. Mm-hmm. Or to just suck it up basically and be taken advantage of.

 Marshall Allen: Yeah.

Dan: Yeah, that’s what,

 Marshall Allen: that is. The theme on this show. Well, I think that’s what, that’s what gets me about a lot of this stuff is that you think that it’s an industry that is setting out to help you and to serve you and to take care of you. Yeah. But then what you end up finding out is that it’s actually behind the scenes.

They’ve stacked the deck against you. And that’s what, that’s what Eric found out the hard way through this. Kind of shocking realization. Like, what do you mean you’re monitoring me? Yeah. Um, and now you’re denying me the thing that my doctor said I need. Yeah. And that’s, and that’s sort of the realization that a lot of patients end up having is that unfortunately you feel they, they feel betrayed by a system that has been set up to heal them.

Dan: I think that’s a really an important thing that you just named, that there’s this feeling of betrayal. Because of course when we let our doctors or anybody involved any, we let anybody in, that’s a very intimate thing. We’re asking for help. We’re allowing our body to be examined and intervened with and whatever.

You know, you have to watch me while I sleep. That word betrayal. Mm-hmm. That really lands right.

In our next couple of episodes, we’re gonna look at the doctor patient relationship, and I mean up close and personal because one researcher in Chicago has been sending fake patients into real doctor’s offices. Actors wired up for sound, and we get to hear some of the results. Meanwhile, I’d like to ask you a favor.

If you listen all the way to the end of these episodes, you know that the last thing I do is say thanks by name to people who have recently joined this show as supporters on Patreon. Patreon’s, a system that allows regular people to make affordable monthly contributions to projects like this show, and that is what I’m asking you to do.

There are rewards, like when this season ends. I’ll be sending out a bunch of handwritten thank you cards and some arm and a leg bandaids and a couple of Doctor of Righteousness diplomats. But the big reward is you’ll be helping this show get made. Every amount makes a difference, a dollar a month, $2, anything.

Partly because I know how to stretch a dollar, and partly because every contribution sets an example for someone else to follow. If you’re feeling it, the web address is patreon.com. Slash Armanda Lake Show patreon.com/armanda Lake Show. Thank you so much. Catch you next time. Till then. Take care of yourself.

This episode was produced by me, Dan Weissman. Our editor is Whitney Henry Lester. Our consulting managing producer is Daisy Rosario. Our music is by Dave Weiner and Blue Dot sessions. Adam Raimundo is our audio wizard. Our intern is Daniel Fernandez. This season of an arm and a leg is a co-production with Kaiser Health News, a nonprofit news service.

About healthcare in America. That is an editorially independent program of the Kaiser Family Foundation. Kaiser Health News and the Foundation are not affiliated with Kaiser Permanente, the big healthcare provider. They share an ancestor. That’s it. It is a fun story. You can check it out at Arm and Leg show.com/kaiser.

Diane Weber is National Editor for broadcast, and Tanya English is senior editor for broadcast. Innovation at Kaiser Health News. They are editorial liaisons to this show, and they are delightful people. If you’re thinking about giving small claims court a try. Arm and a leg show.com/contact. Finally, thank you to some of our new backwards in Patreon.

I could not make this show without you. Pledge two bucks a month or more. You get a shout out right here. Thanks this week to Sarah Crain, Leanne O’Neill, Gail Thomas, Stacey Tima, TBOs Collie Flynn, Rob Ringler, md, Jill Stanton. Ethan Leinberger, Theresa Brown, gold, Candice Lucado, Walter, Luke Yal, Taylor Sublet, Joyce Scanlan and Rachel Marsh.

I get little notifications from Patreon every time someone signs up and every time it’s like,

 Marshall Allen: This is amazing. You know what? Maybe every now and then the little guy can win.