An Arm and a Leg: The Prescription Drug Playbook, Part I

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Dan: Hey there.

When I tell friends that we’ve been working on a series about how to pay less for prescription drugs, I find myself telling them about a guy named Cole Schmidtknecht.

In January of last year, Cole went to a Walgreens in Appleton, Wisconsin, to get refills on the medication he used to control his asthma.

He’d been taking it for years, and he expected to pay about seventy bucks.

But — this is all according to a lawsuit filed by Cole’s folks– the pharmacy said his insurance didn’t cover his medicine anymore. He’d have to pay more than 500 dollars.

He left without it.

A few days later, he had a massive asthma attack. He died after a few days on life support. He was 22 years old.

In their lawsuit, Cole’s folks say the pharmacist at Walgreens could’ve told him right then and there about comparable drugs his insurance would’ve paid for.

This is the kind of information we all need, all deserve.

In surveys, a quarter of Americans say they’ve skipped taking meds in the past 12 months because of cost.

And maybe we can put a little dent in that.

Because there are actually a lot of things to know, and a lot of things– a lot of strategies we can try when it looks like our medicine is gonna cost an arm and a leg.

Over the last few months, you’ve actually been helping us learn about more of these strategies, and here we’re gonna start tying those lessons together.

Back in February, we asked you, our listeners, to tell us how you’ve managed when your prescriptions got really expensive.

And we heard back from a LOT of you.

Person 1: We went to go pick up the prescription and we were like, holy moly, that is so expensive.

Person 2: We’ve been given estimates of $30,000 a dose

Person 3: The pharmacist would burst out laughing every time I showed up

Dan: And … you told us what you did next. The strategies you learned for fighting back, and sometimes winning.

A lot of those strategies, we knew about. Some, we were like, whoa, that’s a new one on us!

I mean, with all of this, there’s no guarantee that your particular problem has a good solution.

Our whole system sucks. These are patches, workarounds.

Cole’s dad– he now works full time trying to change the whole system of how we get charged for meds. Which is a must– and is gonna be a long haul.

But in the meantime, these patches and workarounds — honestly, they can really help a lot of people.

So here’s what we’re gonna do.

We’re gonna break down what we’ve learned into chunks you can digest, and share. We’re gonna take TWO episodes of this show to do it.

And we’re NOT expecting you to take out a pen and paper: We’re gonna share everything in writing, in our First Aid Kit newsletter. Including stuff that doesn’t fit on the podcast.

It’ll take four installments. I’m telling you, there’s a lot.

Meanwhile, we’re starting here with one guy’s story– a listener named Bob.

Bob’s journey is going to help us show you — well, the journey. How the trial and error works. The obstacles.

And we’ll show you the strategies Bob worked to get through those obstacles. Including a tool he developed, that we’re gonna share with you.

And I’ve got some help telling Bob’s story. Our producer Claire Davenport did most of the reporting for this episode. Hey, Claire!

Claire: Hi, Dan!

Dan: You’re gonna tell us Bob’s story, and then at some points, we’ll zoom out — like tour guides, pointing out the big lessons

Claire: Yep! I’m super excited to get into it.

Dan: Let’s go.

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann — I’m a reporter, and I like a challenge. So the job we’ve chosen on this show is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful.

Okay Claire, where should we start with Bob’s story?

Claire: First, let’s meet Bob. He’s got a lot going on…

Bob: Between me and my wife, we have five kids and uh, three dogs, and two cats and two lizards.

Claire: Did you ever anticipate you’d be a dad to so many, Bob: Nobody plans to have many kids, Claire.

Claire: By the way, Bob asked us just to use his first name for privacy reasons. But we’ve checked out his story — he sent us lots of documentation.

Bob’s journey here begins in 2019 — the first day of high school for his daughter, Mary.

After she got home, he wanted to hear how it went, so he called her.

Bob: We were talking and, I would say she’s being a little spacey, but, uh, talking to a 14-year-old on a cell phone, right?

And, and I’ll never forget this, she, we were talking and all of a sudden she said, the ceiling looks so funny.

And then, um, and then she was sort of gone.

Claire: At first, he assumed Mary had just set the phone down — maybe to talk with one of her sisters.

Bob: I text her mom and say, Hey, I was talking to our oldest daughter, and, uh, she just sort of disappeared now she’s not answering the phone. Can you go check on her?

And I still get even choked up talking about this. But, I get a text back in about two minutes saying she’s unconscious.

Claire: They end up calling an ambulance. Bob is scared.

Bob: All kinds of thoughts were running through my mind in terms of what could possibly have happened here. Epilepsy was not one of them.

Claire: Epilepsy. It’s a condition that causes seizures. And Mary was having one while her dad was on the phone with her.

Mary and her folks worked with a pediatric neurologist. They started trying out different medications and dosages.

Bob: We were told, we’re going to figure out what the right medications are for her. This is gonna be a process.

Claire: And it was. It took years of trial and error: they had to experiment with different drug combinations.

Finally they landed on the right mix. That mix included a drug called Clobazam. Bob: And that seemed to be the magic bullet

Claire: A magic bullet with a reasonable price tag.

Bob: the three drugs she was on were well under a hundred dollars for all three of them together

and she went over a year without a seizure.

(beat)

Bob: And then I changed jobs.

Claire: Which had an unexpected consequence. As Bob learned when it was time to refill Mary’s prescription for Clobazam.

Bob was used to paying around 15 dollars.

Bob: This time the pharmacist comes out and says, Hey, your, your Clobazam is gonna be $500.

Claire: Ok, so…Dan, let’s take a step back. Bob changed jobs, and suddenly Mary’s Clobazam is $500. Because…

Dan: Bob’s new job meant… a new insurance plan for the family. And…

Claire: Every insurance plan has its own list of how much you pay for which drugs. And which drugs they don’t cover at all. That list is called “the formulary.”

Dan: That list, that formulary, is based in part on business deals that plans and drug-makers hash out behind closed doors.

Claire: So when you change jobs, change insurance: the difference between what’s on one formulary and what’s on the next: It can be…

Dan: unpredictable at best.

And even if you don’t change jobs, your job may change your insurance plan. That happens a lot.

Claire: And even if your insurance plan doesn’t change, that plan’s formulary can change from year to year.

Dan: So, Claire, this seems like the first big lesson from Bob’s story — the first big obstacle: The deal can change on you. And MAYBE, in this new deal, your insurance offers another drug they say is just as good.

But it may not be just as good for YOU. That’s a thing.

Claire: And it was definitely a thing for Bob and his daughter Mary. Remember, they had spent YEARS of trial and error, finding the perfect regimen.

Just switching to whatever random thing the insurance company approves, that’s not on the table.

So first, Bob thinks, hey maybe there was just some kind of mistake here. New insurance company, right? Maybe the pharmacy got confused. Bob calls his insurance just to ask, and they’re like:

Bob: Oh, well that medication, , is only covered for a certain type of, of epilepsy

Claire: Which isn’t the type they think Mary has. They’re not gonna cover it. So, now we have arrived at the point where Bob busts out his first big strategy: Haggling with his insurance. They’ve said “no,” but that doesn’t mean he has to accept this as their final answer.

Dan: Yep, we heard from so many people — have heard over the years: This is a whole dance, a whole fight.

Claire: Yep, and Bob’s gonna take us through it. In fact, in this very same phone call where his insurance company said they wouldn’t cover Mary’s Clobazam, they basically invited him to this dance. They said:

Bob: Well, there’s a prior authorization that can be filled out. We’ll send that to your doctor.

Dan: There’s a prior authorization for that! We’ll send that to your doctor!” The way Bob says that, it sounds like the insurance person was so cheerful. Making things sound so easy.

But prior authorization…

Claire: That’s a hurdle, a hoop for Bob — and Mary’s doctor — to jump through.

Dan: This will be familiar to a lot of folks already, but: Prior authorization… PRIOR:

Claire: Before the insurance company will pay for Mary’s Clobazam, Dan: They have to AUTHORIZE it.

Claire: her doctor has to make a case that she needs this particular treatment — and the insurance company has to decide the argument is good enough.

Dan: We see it all the time.

Claire: Bob isn’t thrilled by this requirement.

Bob: Seems unnecessary. This is a, you know, board certified pediatric neurologist who’s been seeing this patient for years.

Claire: And who took her through a whole long trial-and-error process to find the right meds.

Dan: Because of Bob’s confidentiality, his insurance company said they couldn’t respond directly to his story — fair enough. But a lot of the time, Insurance companies say: Hey, we’re just discouraging waste with these prior authorizations! Sometimes doctors do just prescribe an expensive thing, when something cheaper would be just as good. Okay.

But a lot of patients say, like Bob would: My doctors and I had already DONE all this checking.

Claire: Bob gets form sent in, but now he’s got another problem. The insurance company needs time to evaluate the prior authorization. And Mary needs her drugs right now.

Bob: She starts to panic a little bit of like, Hey, I, I need my medication. If I miss a couple doses, I could have a seizure.

Dan: That’s a bad problem.

Claire: Luckily: Bob found a way to get Mary’s Clobazam for less than five hundred dollars a week. We’ll get into that a little later.

But for now, just to note: It’s lucky he found that workaround. Because when Bob calls to check on the prior authorization– PA for short– Well, here’s how he says the conversation went…

Bob: ‘Yes, we got the PA information. It was denied.’

‘It was denied? What, uh, why was it denied?’

‘Oh, well, again, it looks like it’s only approved for this one particular type of epilepsy.’

Claire: Which was just what they’d said before. Bob gets ready to appeal.

And he says this is getting to him. When we talked, he mentioned a lesson from this show:

Bob: I think you guys recommend this of like not losing your cool with the customer service people, in the insurance companies.

Dan: We do. Everybody says: It really helps.

Claire: And everybody knows. It’s not actually always possible. Here’s what happened the next time Bob calls his insurance.

Bob: They asked me, oh, how’s your daughter doing? And I just remember saying like, you don’t care how my daughter’s doing. She’s terrified. She’s gonna be walking to class and have a seizure because she doesn’t have the medication. So don’t give me this BS about how’s my daughter doing.

Dan: Bob seems like a pretty level-headed guy.

Also — we’ve kind of withheld this until now– but Claire, you told me Bob works in health care, so he knows a little more about this world than most of us do. Insurance, appeals.

He’s got the advantage, in terms of keeping his cool, of not being in totally foreign terrain.

Claire: Yep, and he says he recovered his cool pretty quickly.

Bob: I pulled back at when I realized what I was doing. Like this isn’t this person’s fault. They’re just probably reading a script.

Dan: But this is kind of the lesson here: No matter what kind of advantages you have, this stuff is so frustrating. Anybody can lose their cool. The key — and maybe we should do a whole show on this — is recovering. Because you’re gonna have to get up and go again.

Claire: Yeah, and we’re just getting to the most frustrating part. Dan: Right.

Claire: After more than a month– and two rounds of appeals– Bob says Mary’s Clobazam finally gets approved.

Dan: And this is the frustrating part because…

Claire: Insurance will cover it now. But they tell him his share is going to be $150. Remember, Bob said under his old insurance, it used to only cost $15.

Bob: So 10 times the price now, plus the price you know, of the other medications she’s on.

Dan: Yep. All this waiting, all this fighting, everything. And it’s ten times more than he used to pay under his old insurance.

Claire: It’s less bad– this insurance originally was gonna make him pay more than 500 bucks. But yeah. Not great.

Dan: But Claire: this is not the end of Bob’s story, right?

Claire: Not even close.

Bob: What this sparked us to do is to look at, well okay, if it’s not going to get approved, what are the other options?

Claire: We’ll get into those options– after the break.

Dan:This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their reporters win all kinds of awards every year. We are honored to work with them.

So, Bob has worked the strategy of Haggling With His Insurance. And he won. Kind of. Except that winning still leaves him paying ten times more than he used to.

Claire: Yes, and now he’s going to work a whole different strategy: Ignoring his insurance. Because there can be better deals elsewhere. Bob starts with GoodRx.

Dan: Lots of people know it — it’s a website where you tell them what drug you need, and they’ll show you deals — discounts — at local pharmacies.

Which does not always work. Saving 50 percent on a thousand dollar drug does not make it affordable. I know people who get mad when you mention it.

Claire: Bob says he got mad because of who recommended it to him: a rep from his insurance company.

Bob: Like you’re my insurance company. Why? You’re, that’s what I pay you for.

Claire: Right? he pays them premiums so he can pay less for health care, including medicine. But he didn’t write it off. And he says now, it was actually useful: even though he knew about GoodRx before, he wouldn’t have thought to go there.

Bob: like I almost, and this is gonna sound crazy, but I almost thought of GoodRx as like Medicaid. Like, I think I thought of it as like, oh, well that’s what you use if you don’t have insurance.

Dan: Interesting! And in one sense, he wasn’t wrong: When you use a GoodRx discount, you can’t use your insurance too. But it turns out, even when you have insurance, GoodRx can be worth looking at.

Claire: Yes, and here’s what makes Bob’s story stand out — the reason we wanted to really dig in. It’s what he did next. Because he didn’t just look at GoodRx. He started exploring a whole world of options. Actually, worlds.

One is the world of sites LIKE GoodRx.

Dan: Ooh, I’m googling “sites like GoodRx” — here’s SingleCare, RxSaver, BuzzRx…

Claire: Yep, and for any given drug, each of these sites may show you different prices. So now that he was looking at this world, he started mapping it.

Bob: I created this spreadsheet that had each of those options, the different medications and then the different pharmacies and where we could kind of get the best price for things.

Claire: And: Once Bob started looking at THIS outside-insurance world, started exploring others. Like Cost Plus Drugs.

Bob: And –What was really sort of eye-opening to me is they did so much better than our insurance company did.

Dan: We should really talk about Mark Cuban Cost Plus Drugs, to use its full name. It’s pretty different.

Claire: Right. The celebrity owner.

Dan: Mark Cuban is basically famous for being rich. Like he owns the Dallas Mavericks basketball team.

Claire: And he’s spent 15 years on the reality show Shark Tank. [THEME]

Dan: It’s like American Idol for startups. People pitch their business to investors who might offer to buy in, on camera.

TV announcer: Mark Cuban has just made the largest offer in Shark Tank history.

Mark Cuban: Lemme ask you a question. If I offered you $30 million for the company, would you take it?

Claire: All of that, but the celebrity factor isn’t really what makes Cost Plus different: The company buys meds direct from manufacturers, and adds 15 percent to their wholesale cost.

Dan: Plus shipping fees, and five bucks for “pharmacy labor”. Claire: Bob added CostPlus to his spreadsheet. And he liked what he saw. Bob: It’s very transparent and super low cost.

Claire: He asked Mary’s doctors to transfer two of Mary’s prescriptions.

Dan: But not all of them. Cost Plus doesn’t carry everything. For one thing, they mostly only carry generic drugs.

Claire: And — what matters in Bob’s case: they don’t carry controlled substances. Nobody sells them online because it’s illegal to ship them. And Mary’s Clobazam? It’s a type of controlled substance: They’re called Benzos.

Dan: Like Valium and Xanax.

Claire: So for Clobazam, the best price he can find is 85 bucks, using GoodRx at Walmart.

Dan: A LOT less than his insurance was gonna have him pay. go spreadsheet! Head to WalMart, use GoodRx there.

Claire: Just one thing: Mary’s off at college now, and there’s no Walmart right nearby. And Mary, doesn’t drive.

Bob: Well, she has epilepsy. She can’t have a driver’s license, so it’s uh, she can’t drive anywhere. Right? We had a Walmart near our house at home. I’m two and a half hours away from her.

Claire: And he says he made the drive.

Dan: Dad of the decade. For ALL of this. Bob fought down the insurance companies. He shopped around. He made the spreadsheets. And he made a bunch of round trips to his daughter’s college.

Claire: Yeah, Bob rules. But he’s not exactly happy about all of it.

Bob: I pay an insurance company every month outta my paycheck for prescription drug benefit that I don’t feel like I get, right? Like I’m having to go outside of that in order to get them the medications that are nothing special. Like, clobazam has been on the market since like the seventies.

Dan: Yeah, fair.

Claire: But he may be game to take the win on that Dad of the Decade award.

Bob: Would say I did a magnificent job of, you know, staying, staying calm, and hiding that stress from Mary

Mary: I assumed he was gonna figure it out. Um.. [laughs] Bob: Total confidence in me, right? [laughs]

Dan: That’s Mary?

Claire: That’s her.

Dan: OK, so let’s review these lessons: Yes, you can fight your insurance, but you may get a better deal going outside of it. All of which suck — this was a LOT of work, and not a total victory — but is better than NOT knowing any of this.

Claire: Yes. And this story ends up going full circle. Back to the first lesson. The deal can change on you. For worse. Or for better.

Bob changed jobs again recently — so, new insurance.

And actually, it’s good this time! Under Bob’s new insurance, Mary’s clobazam is … back to 15 dollars.

Which she learned when she went to pick it up recently.

Mary: I was like, this is amazing. Definitely a weight lifted off my chest when I saw a two digit number.

Dan: And speaking of how the deal can change on you… this reminds me: went looking at GoodRx recently, and saw a new price for Mary’s Clobazam there, too.

Claire: Yes. The lowest price on GoodRx is now: Thirty dollars, at a CVS she can walk to.

I showed the current GoodRx prices to Bob and Mary, and what struck Mary at first was this: how different the prices at different pharmacies were.

GoodRx said CVS had Clobazam for 30 dollars but…

Mary: It said Walgreens was like over $300.over. It was like 300 and then everything else is between 25 and 35, maybe 40, but I don’t understand that.

Dan: I KNOW! Man, I had this exact experience a few years ago. I was like, WHY ARE THESE SO DIFFERENT?

I ended up learning about companies called pharmacy benefit managers or PBMs. They’re the ones that actually decide which drugs our insurance covers, and how much we pay for them.

We did a WHOLE episode about them (it was SOO complicated, but I learned a huge amount)

Claire: So we are NOT gonna get into here, but we’ll leave a link in the show notes in case people want to nerd out.

Because today we’re just looking at how to get things to work better for YOU.

So: Mary was curious about the 300 Walgreens price from GoodRx. And by the way, she’s also furious with the whole system.

But here’s one thing she was filing away: She could now use GoodRx to get Clobazam for 30 dollars at CVS.

Mary: It was not like that a couple years ago. And it is reassuring to know, like, if I show up and it’s, you know, $150, there are places that would have a price I could actually afford.

Dan: Let’s take that glass half full and add a little bit to it. Because in addition to their story, Bob gave us one more thing: His spreadsheet. And we’ve been adding to it.

Claire: Yep. We’ve got a template you can download — it’s in the show notes for this episode, and it’s in our First Aid Kit newsletter. And in addition to GoodRx, and some similar sites, and CostPlus, we’re adding lines where you can log prices from a world Bob didn’t explore.

Dan: I mean, he’s just one guy.

Claire: So, one thing we’re adding: ordering from pharmacies outside the U.S.

Drug prices are lower basically everywhere else, and some pharmacies in Canada will ship to the U.S. To avoid shady internet stuff, a tool called Pharmacy Checker will steer you to ones that are above board.

Dan: Another addition: Manufacturer coupons. SOMETIMES, especially with brand-name drugs, pharma companies offer coupons that can make drugs affordable.

Claire: There are a lot of caveats with those too.

Dan: Oh man, tell me about it. But not right now. There are TOO MANY possible workarounds, too many caveats, for any one person to keep in mind. That’s why we are doing this across two episodes and FOUR installments of our First Aid Kit newsletter.

It’s all exhausting, and there’s no guarantees. But it’s all worth knowing. And with help from Bob, and a lot of listeners who chimed in, we are boiling things down and putting them in forms we hope you’ll find useful.

As always, DEFINITELY please let us know how the stuff we provide can be even better.

You can find the First Aid Kit newsletter at arm and a leg show dot com, slash first aid kit. New installments there every week. We’ll have a link wherever you’re listening to this.

And in our next episode, we’ll dive into some tips that really surprised us, from folks who do this kind of thing for a living.

Erika: I guess in my heart of hearts, I want everyone to be taken care of. Dan: For now, Claire: Thank you so much for bringing us Bob’s story. Claire: My pleasure!

Dan: And we’ll be back with the second episode in this series in a few weeks. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by Claire Davenport with help from me, Dan Weissmann, and Emily Pisacreta. And our new intern: Welcome Lauren Gould! It was edited by Ellen Weiss.

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions.

Bea Bosco is our consulting director of operations.

Lynne Johnson is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America — and a core program at KFF: an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR station. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support.

Thanks! And thanks for listening.