The Prescription Drug Playbook (Full Version)

DAN: Hey there,

We are working on some big projects this summer. So this week we’re bringing back a story from last year — actually a series, condensed into one special episode. Here we go.

A while ago, I heard a story that I just couldn’t shake. It was about a guy named Cole Schmidtknecht.

In 2024, Cole went to a Walgreens in Appleton, Wisconsin, where he lived, to refill the medication he used to control his asthma. He’d been taking it for years, and he expected to pay about seventy bucks.

But — according to a lawsuit filed by Cole’s family — the pharmacy told him his insurance no longer covered the medicine. The price for him was going to be more than $500.

He didn’t have it. So he left without his medicine.

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

And of course, Cole is far from the only person to go without medicine because of the price tag. 

In a recent survey, four in ten people said that at some point in the last year, they hadn’t taken their medicine as prescribed because of the cost. 

Most people survive, but deciding between the medicine you need to be healthy and — other necessities– it’s not OK and way too common. We need systemic change. 

And in the meantime, we can definitely benefit from help navigating this chaotic, unfair landscape. 

Because Cole Schmidtknecht did not have to leave that pharmacy empty handed. He didn’t have to die.

In their lawsuit, Cole’s family says the pharmacist at Walgreens could have told him right then and there about comparable drugs his insurance would have covered.

That’s the kind of information we all need: when the price of our medicine is more than we can really pay, what alternatives do we have?

It turns out: we have a lot of them. They’re patches, workarounds, hacks. There’s no telling which one — if any — is going to work in any particular situation. 

But as Cole’s story makes painfully clear: we can’t count on anybody to give us the information we need right when we need it. 

Everybody needs a playbook. 

So last year, with your help, we produced one. A series of podcast episodes and newsletters. 

We started by asking you:  How have you managed when your prescriptions get really expensive? And of course we heard from a lot of you who have faced this problem: 

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

Sandra Maher: We’ve been given estimates of $30,000 a dose.

Marna Miller: The pharmacist would burst out laughing every time I showed up to pick up the prescription.

Dan: And then you told us what you did next — the strategies you tried, the workarounds you found, and the moments when sometimes, you actually won.

A lot of those moves, we already knew about. Some of them were new to us.

And the truth is, a playbook — a collection of possible workarounds — isn’t a solution. There may not be a great play for you in a given situation. 

And the best available play: It could still require more work, and persistence, and patience than is fair, or right.

But all of these strategies are worth knowing about. And reviewing sometimes. So we are bringing back everything we learned in that series– the whole Prescription Drug Playbook–  in one episode, today. 

You’ll hear from folks who come at this from lots of different – and honestly really surprising– angles. 

First up, our story about 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 here. 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: Yes! 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.

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

Claire: First, let’s meet Bob. He’s got a very full house. 

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.

Dan: I like this guy.

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. 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, you know, 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. 

So 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 that can be filled out! 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: Yeah, and 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: “In this case, 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: I mean, 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, “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: You know, 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 still ten times more than he used to pay under his old insurance.

Claire: It’s less bad– this insurance was originally 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, okay, well, if it’s not going to get approved, what are the other options?

Claire: 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 GoodRx — 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 drug that costs a thousand dollars does not make it affordable. I know people who get mad when you mention GoodRx.

Claire: Bob had heard of it – but didn’t think it was for  people like him, who had insurance.

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 out.

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, he 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.

Claire: So the company’s full name is Mark Cuban Cost Plus Drugs — named after its founder, the celebrity billionaire.  But what makes the company different isn’t the glam factor, it’s the business model. 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 doctor to transfer two of her 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: Yeah. So for Clobazam, the best price he can find is 85 bucks, using GoodRx at Walmart.

Dan: Which is a LOT less than his insurance was gonna have him pay. Go spreadsheet! Head to WalMart, use GoodRx there.

Claire: Just one thing: as Mary headed off to college a few years later — she discovered there was 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: I 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]

Mary: I did! I mean, I did, right? 

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 sucks — this was a LOT of work, and not a total victory — but it’s 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 recently when she went to go pick it up.

Mary: I was like, this is amazing. Definitely a weight lifted off my chest when I saw a two digit number.  It was not like that a couple years ago and it is reassuring to know, like, if I show up and it’s $150, there are places that would have a price I could actually afford. 

Dan: Now 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 more affordable.

Claire: Yeah, and there’s a lot of caveats with those too. 

DAN: Claire, thank you so much! 

Claire:  My pleasure.

Dan: Just ahead – we’ll dive into some tips that really surprised us, from folks who do this kind of thing for a living.

.

<<<<<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 journalists do amazing work. We are honored to be their colleagues. 

DAN: OK, now on to tips from professionals.  

Let’s start with Jeanne Chamberlain… Jeanne’s from North Carolina. And she regularly talks with folks who take like 15 different meds every day.

Jeanne Chamberlin: You are like, oh my gosh. And literally the retail costs are $20,000 a month.

Dan: Jeanne’s an expert, twice over. Since retiring from a career managing hospitals and medical groups, she’s been helping her fellow seniors figure out how to manage what they pay for health care — as a county-level volunteer coordinator for a program called SHIP.

Jeanne: And SHIP stands for Seniors Health Insurance Information Program.

Dan: Actually in some cases it stands for State Health Insurance Assistance Program. Whatever you wanna call it — It’s a federally funded program that helps seniors with all things Medicare. Every state has its own version of SHIP. During the busy season — that’s in the fall, when people can pick new insurance for the coming year– Jeanne says she and her team speak to more than a hundred people a week.

And one thing that comes up in basically ALL of those conversations is this question: Can I change things to get my meds for less next year?

Jeanne says one year, her team added up the impact of those conversations, and half of the people ended up changing plans, and on average, they saved 300 dollars a person. Not bad…

Jeanne: But there were many, many people who saved a thousand, 2,000, even $10,000 by changing from one Medicare plan to another based entirely on the cost of their drugs.

Dan: Jeanne wrote to tell us about what she knows from helping people enroll in Medicare. But she also had an instructive personal story to share. Because even experts have to scramble sometimes.

A while ago, when Jeanne’s husband had a gut infection, he got prescribed two antibiotics. His insurance coverage meant one was gonna cost him thirty bucks. But the other one? His plan didn’t cover it. And… 

Jeanne: It was $1,200. For a 14 day supply. It was just obscenely expensive.

Dan: So immediately, Jeanne says she went into problem solving mode. And her order of operations provides a great template for any of us.

Step one: Google for discounts. Just taking a quick first pass at the kind of thing we talked about with Bob’s story. Maybe that’s GoodRx. Maybe that’s a coupon from the drug maker. 

Results for Jeanne: Not great.

Jeanne: I could get it down to $800. It’s like, still, you’re like $800. Really?

Dan: So, on to step two: Tell your provider there’s a problem and ask for advice.

Jeanne: We went back to the doctor and said, “Is there something else that, you know, you can do?”

Dan: Jeanne was thinking: Maybe the doc could recommend another antibiotic — one that insurance would cover. Or maybe the doc could help them fight her husband’s insurance company to get this drug covered. But actually, this doctor’s proposal was much simpler.

Jeanne: She said, “Well,  just take the other one.”

Dan: Just take the one Jeanne’s husband could get for thirty bucks. Skip the second drug.

Jeanne: So he did, and he was fine!

Dan: END OF STORY. In this case. It’s not always that easy. But the moral is: ASK. If your insurance covers a different drug, your doc can tell you if it’s a good bet for you. If not… well… we’ll come back to other ways your doc could help.

But right now let’s move on to the biggest, most valuable advice Jeanne gives to seniors– and that applies to everybody.

Especially anybody with meds they’re taking long term, like blood pressure or cholesterol meds, or whatever.

And the advice is this: Look ahead, every year.

In the fall, when it’s time to sign up for next year’s insurance plan: Get a look at the formulary. That’s the list Bob had to learn about the hard way: which drugs your insurance will cover, and how much they expect you to pay for them.

So, Bob changed jobs — new insurance, new formulary. But even if you don’t change anything about your insurance, your insurance could change their formulary. 

Jeanne sees it all the time with seniors, like when their plans reboot at New Year’s.

Jeanne: When people come in in January and this happens every year, and say, “I just went to the pharmacy and they want $300 for my medicine. And last year, or last month in December, it was $30.” 

Dan: These folks didn’t plan to change anything about their insurance — but their insurance plan changed things on them– and stopped covering a drug they’ve been taking. Now they’re getting charged sticker price. And Jeanne’s like, “Man, I wish you’d have come to see us during the fall sign-up– open enrollment.”

Jeanne: We could have probably found a plan that covered that drug still.

Dan: And look, it’s true that folks on Medicare tend to have more choices than the rest of us here. In Medicare, drug coverage is its own separate plan — it’s called Part D — and seniors in Jeanne’s county for instance have more than a dozen plans to pick from.

If you get insurance from work — and maybe there’s just one plan — this thing of looking ahead is maybe even more important.

At some point, maybe a couple months before the new year, you should get a chance to see that next year’s formulary. Like when they’re telling you you’re covered for next year.

And it could say, “Hey, your drug is gonna be more expensive for you next year.” That’s your cue to start problem-solving right away. Get a plan in place before that new price kicks in.

This is exactly the advice I wish somebody had given Cole Schmidtnect — he showed up at Walgreens expecting to pay 70 bucks for his asthma meds in JANUARY. But the formulary on his insurance had changed when the new year started. 

He had no warning those same meds would be 500 bucks — and didn’t know he had any alternatives.  

So Jeanne and other experts say: get the news early, so you can get a plan going.

Step one: Check: Can you find discounts online that make this drug affordable? Okay, cool. No? Time to get in touch with your provider’s office: start tapping their expertise.

Jeanne: The provider normally has a lot of people with your condition and probably prescribes this medication a lot.

Dan: And so, if your insurance company says they’ve got some other drug you could take, one they’ll pay for– your provider will know: could that drug work for you? And if you’ve got a choice of insurance plans — but they all require prior authorization — that process Bob spent so long fighting through — Jeanne says to ask your provider: Is one of those insurance companies more likely to actually issue that approval?

Jeanne: Ask them about a plan where they have an easy time getting it approved for somebody with your condition where it always goes through.

Dan: And that’s the plan you want to pick. And, speaking of getting your insurance company’s approval:

We’re about to move from Jeanne’s advice – plan ahead, get your provider to help — to the next step. Because you can’t plan everything. Sometimes you get sick, with something new. No planning for that.

And sometimes, your insurance is definitely not gonna say yes right away to the drug your doctor thinks you need. And your doctor thinks you need this particular drug. So, how ELSE can your provider help? 

Well, it’s time to meet our next expert. Unlike Jeanne, who spends her days just trying to help folks in her community, John is, well..

John: I work for an industry with an approval rating below Congress.

Dan: He’s a pharmaceutical sales rep! He asked us to keep his full name and employer confidential. He’s also an Arm and a Leg fan.

John: I love it when, uh, I hear stories of average people just sticking it to the insurance company. It’s nice when the patient wins, cause they don’t get a lot of wins.

Dan: We reached John in his primary office — also known as his car. When we asked listeners a few months ago to share lessons about getting prescription meds without paying an arm and a leg, he wrote right in with tips. And one, I love just for the attitude. Here’s John reading from the email he sent us:

John: Step therapies. Uh, denials and price at pharmacy should be viewed as suggestions.

Dan: Suggestions. Perfect. The other is much more specific. As a salesman, a big part of John’s job is prepping doctors for the fights they’re gonna have with insurance companies, to get approvals for drugs. He does that because approvals for them mean sales for John.

Of course, approvals take time.

John: But one thing that you know doesn’t care about time is diseases. The disease of Crohn’s or Bipolar disorder, whatever, isn’t like, look, I’ll hold off on affecting you until this prior authorization is done.

Dan: So here’s John’s advice: while you’re fighting for that approval– pushing back on the insurance company’s “suggestion” that you try something else– Ask your provider if they can get free samples from the pharma company — from a rep like him.

John: And the provider hopefully will say, yeah, let me call the rep and we’ll leave some at front for you.

Dan: Actually, your provider may already have some on hand. A study from a few years ago found that TWO THIRDS of primary-care practices had CLOSETS of pharmaceutical samples. Which, wow.

So, let’s address something big: Like John joked about as we introduced him, pharma sales reps are NOT generally looked upon as model citizens.

The rap is: Some of them use less-than-scrupulous tactics to encourage doctors to prescribe expensive drugs… even to patients who might not get extra benefit from a specific drug. Or, in the case of opioids — which got pushed really hard — might cause harm. And free samples are part of that process.

So, some providers won’t meet with sales reps at all. Some health systems don’t allow any of their staff to meet with them.

But you don’t have to approve of how pharmaceutical companies do their business to take advantage of John’s suggestion. And neither does your doctor.

John says, to get free samples, your doctor might not even need to talk to anyone.

They can just make a request online, at the manufacturer’s website. John says it definitely happens.

John: So even with providers or doctors that I’ve never seen in my nine years, I know that they’ve gotten samples before.

Dan: But here too, there will be limits.

John: Some manufacturers don’t even do samples. So it really varies a lot.

Dan: But a lot of these samples do exist — And the idea of using them as a stopgap while you fight to get your insurance to pay for the meds you need — I had never thought of it until we asked you, our listeners, for your tips.

Dan: OK, here’s another tip I hadn’t really considered, from another expert.  Like Jeanne, who we heard from earlier. Cristy Gupton also lives in North Carolina. She works as an independent employee benefits designer. You’re probably like, what the hell is that? Here’s how she describes her work.

Cristy Gupton: Imagine you’re a kid in high school, in shop class, and your teacher puts an old engine on the table, and says, take it apart and put it back together again and make sure it works.

Dan: Except, the machine is a health benefit program for workers. And– back to the shop-class metaphor — Cristy says she’s the real gear-head in the room .

Cristy Gupton: By the time I put the engine back together, it works twice as good, but at half the cost.

Dan: Cristy says she does it by ditching expensive, off-the-shelf parts — standard insurance policies from big companies — for custom solutions. It’s a WHOLE THING, and super-interesting, and worth going into.

For now, she’s got one big tip that *some* of us could use to get access to meds at super-low prices. Basically it’s this: Look for a community health center that offers a sliding scale. They can get drugs at extremely low prices, through a federal program called 340B. How low?

Cristy Gupton: The drug Humira is one of the most prescribed drugs in America. And the list price is probably somewhere in the neighborhood of 5,000 a month. But a 340B covered entity could purchase it for a penny.

Dan: So we checked, and actually: Humira’s list price isn’t 5,000 dollars. It’s 7,000 dollars. But YES, a 340B clinic can get it for a penny. Now, they don’t get every drug that cheap, but the Humira example suggests this 340b thing is worth knowing about.  And before I get you too excited: it’s also definitely not guaranteed to work for you. Partly because 340B is complicated in all kinds of ways. Here’s my colleague Emily Pisacreta asking Cristy about it.

Emily: Help me understand what 340B is.

Cristy Gupton: I’ll give you my best, um, like only know enough to be dangerous answer.

Dan: After checking some actual experts, here’s what we think you need to know: A federal law from the 1990s — section 340B of that law — basically requires drug-makers to give some hospitals and health centers that serve low-income folks super-duper discounts on meds. Those discounts don’t always get passed along to patients. The feds say hospitals and clinics can take a profit, to subsidize their other work .

But the rules say: community health centers DO need to make drugs affordable to people with lower incomes. Specifically, to people who make less than two times the federal poverty level.

For 2025, that’s just over 64 thousand dollars for a family of four. Not a lot.

But it’s a lot of people: More than 28 percent of Americans qualify. And some clinics may have sliding scales for people with higher incomes than that.

So: There’s a search tool. We’ve got a link wherever you’re listening to this. Find a clinic in your area, call them, and see what the deal is.

One last thing to know: You’ve gotta actually be a patient at the clinic in order to use this program. And actually, if you meet the income requirements, all the clinic’s services are gonna be super-subidized.

But if you don’t want to engage too deeply with the clinic– don’t want to switch over all your care to a new team — Cristy says, in her experience, you may not have to.

Cristy Gupton: It can be as loose as they just have a virtual visit. I mean, that’s pretty simple.

Dan: Again, we’ve got a link to the search tool for finding a health center near you. Which of course…near you… not everybody is gonna have. Your mileage may vary, literally. But is it worth checking? Yeah, I think so.

OK we’ve thrown a LOT at you. I know, I know. And we do have one more set of expert tips. From someone we are really glad to have met. So here’s Erika — she didn’t get her employer’s OK to talk to us so we’re just using her first name – and her expertise is part of a lifelong project.

Erika: You know, as a child with Type one diabetes, I had a very dysfunctional household and I had to take care of myself from a very young age. I have learned that the skills that I developed as a child with a chronic illness are transferable into a career to help people be taken care of.

Dan: So now, she works as a patient navigator– a kind of case worker, at a hospital in rural Oregon. When my colleague Emily talked with Erika, they bonded a little.

Emily: I live with type one diabetes and I really wish that I had had a patient navigator, um, when I was diagnosed.

Erika: Yeah, I wish I had me as a patient navigator too.

Dan: Most of the patients Erika does work with are managing chronic conditions and other serious health problems, under tough circumstances.

Erika: For example, let’s say a patient has an amputation and they’re told on discharge to keep it elevated and keep it clean. Well if they’re living in their car, that can be a challenge. So in that case, case management would try to find them a hotel for a couple weeks.

Dan: And of course, one of the most common problems she tackles: helping people get their meds at prices they can afford.

Erika: There are weeks where that’s all I’ll do.

Dan: For insured patients, Erika he starts with drugs-and-insurance 101: Helping them figure out which drugs their insurance covers, at what price to them, and coaching them before they call their insurance company.

Erika: I offer to be on the call with them if they want. And I will tell you right now that we’re gonna be on hold with that insurance company for 30 minutes.

Dan: Yeah, that sounds familiar. Also, for some patients on Medicaid, Erika runs interference with bureaucracies.

And, when there’s no way that insurance will make the right drugs affordable for her patients– including folks with no insurance at all– Erika helps them explore one of the options she wrote in to us about.

“Patient Assistance Programs” based on income. Some are from manufacturers, others come from private foundations.

Erika: It’s such a matter of somebody knowing who to ask and where to get the stuff.

Dan: And there are websites to find this kind of thing — we’ve got links and guides for you — and she says the applications aren’t complicated. But the people she works with, they need extra help.

Erika: A lot of my patients don’t even know how to use a computer or to get onto the internet, or they don’t have smart phones, they just have cell phones. So a lot of them, I meet with them. I take my laptop, and we do an online application. I help them fill it out.

Dan: And then hope it works. Some programs only give out so much assistance per year, so not everybody gets help.

Erika: It’s a frustrating fight. I feel bad that people have to wage this, you know, to get what they need to be healthy. It’s, it’s not like people are asking for a BMW or new clothing. People are asking for, oftentimes medications they need to keep themselves alive. It’s, it’s like asking for oxygen. Like what if you were told you you couldn’t afford oxygen? That’s the way people feel sometimes.

Dan: And that’s why, even though Erika wrote to us about practical specifics, it’s her approach, her presence that we especially wanted to share with you.

Erika: I advised all my patients to get a tattoo that says, be persistent. I mean, seriously, I don’t expect them to get tattoos. But as a patient who manages a chronic condition, you just have to be.

Dan: Oh yeah. The ongoing burden of dealing with all this, it’s a bear. And it came up again and again when you wrote in to us.

Erika: Yeah. Stress management, whew.

Dan: For Erika’s patients, and for herself too.

Erika: I have to remember to like, stop, step away, do some breathing. And these are things I teach to my patients a little bit too. Like, okay, let’s stop and do some breathing together on the phone. Okay.

Dan: She calls her strategy “self compassion.” It’s about helping people see how much they’re already doing.

Erika: I encourage people to take a moment and appreciate that about yourself. Okay? you’ve been on the phone with your insurance company for 30 minutes.

You’re trying to get this done. You really need to appreciate that you’re doing that for your health. For your health. Feel good about that, at least.

Dan: You are taking time to listen to this podcast. We are here, right now, together, doing our best.

For the practical lessons — all the things to try, that may or may not work — we’ve done our best to write them down for you, and organize them so they’re useful, in our First Aid Kit newsletter. Four installments.

You can find those newsletters at Arm and a Leg show, dot com, slash, drugs.

Arm and a Leg show dot com, slash drugs. There’ll be a link wherever you’re listening to this.

We’ll be back with a new episode in a few weeks.

Till next time, take care of yourself.

This episode of An Arm and a Leg was produced by Emily Pisacreta and Claire Davenport with help from me, Dan Weissmann, and Lauren Gould, and edited by Ellen Weiss.

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions.

Sarah Ballema is our operations manager.

Bea Bosco is our consulting director of operations.

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 the 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.