Dan: <\/strong>Hey there.\u00a0<\/p>\nWhen I tell friends that we\u2019ve been working on a series about how to pay less for prescription drugs, I find myself telling them about a guy named Cole Schmidtknecht.\u00a0<\/p>\n
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.\u00a0<\/p>\n
He\u2019d been taking it for years, and he expected to pay about seventy bucks.\u00a0<\/p>\n
But \u2014 this is all according to a lawsuit filed by Cole\u2019s folks\u2013 the pharmacy said his insurance didn\u2019t cover his medicine anymore. He\u2019d have to pay more than 500 dollars.\u00a0<\/p>\n
He left without it.\u00a0<\/p>\n
A few days later, he had a massive asthma attack. He died after a few days on life support. He was 22 years old.\u00a0<\/p>\n
In their lawsuit, Cole\u2019s folks say the pharmacist at Walgreens could\u2019ve told him right then and there about comparable drugs his insurance would\u2019ve paid for.\u00a0<\/p>\n
This is the kind of information we all need, all deserve.\u00a0<\/p>\n
In surveys, a quarter of Americans say they\u2019ve skipped taking meds in the past 12 months because of cost.\u00a0<\/p>\n
And maybe we can put a little dent in that.\u00a0<\/p>\n
Because there are actually a lot of things to know, and a lot of things\u2013 a lot of strategies we can try when it looks like our medicine is gonna cost an arm and a leg.\u00a0<\/p>\n
Over the last few months, you\u2019ve actually been helping us learn about more of these strategies, and here we\u2019re gonna start tying those lessons together.\u00a0<\/p>\n
Back in February, we asked you, our listeners, to tell us how you\u2019ve managed when your prescriptions got really expensive.<\/p>\n
And we heard back from a LOT of you.\u00a0<\/p>\n
Person 1: We went to go pick up the prescription and we were like, holy moly, that is so expensive.\u00a0<\/strong><\/p>\nPerson 2: We\u2019ve been given estimates of $30,000 a dose\u00a0<\/strong><\/p>\nPerson 3: The pharmacist would burst out laughing every time I showed up\u00a0<\/strong><\/p>\nDan: <\/strong>And \u2026 you told us what you did next. The strategies you learned for fighting back, and sometimes winning.\u00a0<\/p>\nA lot of those strategies, we knew about. Some, we were like, whoa, that\u2019s a new one on us!\u00a0<\/p>\n
I mean, with all of this, there\u2019s no guarantee that your particular problem has a good solution.\u00a0<\/p>\n
Our whole system sucks. These are patches, workarounds.\u00a0<\/p>\n
Cole\u2019s dad\u2013 he now works full time trying to change the whole system of how we get charged for meds. Which is a must\u2013 and is gonna be a long haul.\u00a0<\/p>\n
But in the meantime, these patches and workarounds \u2014 honestly, they can really help a lot of people.\u00a0<\/p>\n
So here\u2019s what we\u2019re gonna do.\u00a0<\/p>\n
We\u2019re gonna break down what we\u2019ve learned into chunks you can digest, and share. We\u2019re gonna take TWO episodes of this show to do it.\u00a0<\/p>\n
And we\u2019re NOT expecting you to take out a pen and paper: We\u2019re gonna share everything in writing, in our First Aid Kit newsletter. Including stuff that doesn\u2019t fit on the podcast.\u00a0<\/p>\n
It\u2019ll take four installments. I\u2019m telling you, there\u2019s a lot.\u00a0<\/p>\n
Meanwhile, we\u2019re starting here with one guy\u2019s story\u2013 a listener named Bob.\u00a0<\/p>\n
Bob\u2019s journey is going to help us show you \u2014 well, the journey. How the trial and error works. The obstacles.<\/p>\n
And we\u2019ll show you the strategies Bob worked to get through those obstacles. Including a tool he developed, that we\u2019re gonna share with you.\u00a0<\/p>\n
And I\u2019ve got some help telling Bob\u2019s story. Our producer Claire Davenport did most of the reporting for this episode. Hey, Claire!\u00a0<\/p>\n
Claire: <\/strong>Hi, Dan!\u00a0<\/p>\nDan: <\/strong>You\u2019re gonna tell us Bob\u2019s story, and then at some points, we\u2019ll zoom out \u2014 like tour guides, pointing out the big lessons\u00a0<\/p>\nClaire: <\/strong>Yep! I\u2019m super excited to get into it.\u00a0<\/p>\nDan: <\/strong>Let\u2019s go.\u00a0<\/p>\nThis 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\u2019m Dan Weissmann \u2014 I\u2019m a reporter, and I like a challenge. So the job we\u2019ve 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.\u00a0<\/p>\n
Okay Claire, where should we start with Bob\u2019s story?\u00a0<\/p>\n
Claire: <\/strong>First, let\u2019s meet Bob. He\u2019s got a lot going on\u2026\u00a0<\/p>\nBob: Between me and my wife, we have five kids and uh, three dogs, and two cats and two lizards.\u00a0<\/strong><\/p>\nClaire: Did you ever anticipate you\u2019d be a dad to so many, Bob: Nobody plans to have many kids, Claire.\u00a0<\/strong><\/p>\nClaire: <\/strong>By the way, Bob asked us just to use his first name for privacy reasons. But we\u2019ve checked out his story \u2014 he sent us lots of documentation.\u00a0<\/p>\nBob\u2019s journey here begins in 2019 \u2014 the first day of high school for his daughter, Mary.\u00a0<\/p>\n
After she got home, he wanted to hear how it went, so he called her.<\/p>\n
Bob: We were talking and, I would say she\u2019s being a little spacey, but, uh, talking to a 14-year-old on a cell phone, right?\u00a0<\/strong><\/p>\nAnd, and I\u2019ll never forget this, she, we were talking and all of a sudden she said, the ceiling looks so funny.\u00a0<\/strong><\/p>\nAnd then, um, and then she was sort of gone.\u00a0<\/strong><\/p>\nClaire: <\/strong>At first, he assumed Mary had just set the phone down \u2014 maybe to talk with one of her sisters.\u00a0<\/p>\nBob: I text her mom and say, Hey, I was talking to our oldest daughter, and, uh, she just sort of disappeared now she\u2019s not answering the phone. Can you go check on her?\u00a0<\/strong><\/p>\nAnd I still get even choked up talking about this. But, I get a text back in about two minutes saying she\u2019s unconscious.\u00a0<\/strong><\/p>\nClaire: <\/strong>They end up calling an ambulance. Bob is scared.\u00a0<\/p>\nBob: All kinds of thoughts were running through my mind in terms of what could possibly have happened here. Epilepsy was not one of them.\u00a0<\/strong><\/p>\nClaire: <\/strong>Epilepsy. It\u2019s a condition that causes seizures<\/em>. And Mary was having one while her dad was on the phone with her.\u00a0<\/p>\nMary and her folks worked with a pediatric neurologist. They started trying out different medications and dosages.\u00a0<\/p>\n
Bob: We were told, we\u2019re going to figure out what the right medications are for her. This is gonna be a process.\u00a0<\/strong><\/p>\nClaire: <\/strong>And it was. It took years of trial and error: they had to experiment with different drug combinations.\u00a0<\/p>\nFinally they landed on the right mix. That mix included a drug called Clobazam. Bob: And that seemed to be the magic bullet\u00a0<\/strong><\/p>\nClaire: <\/strong>A magic bullet with a reasonable price tag.<\/p>\nBob: the three drugs she was on were well under a hundred dollars for all three of them together\u00a0<\/strong><\/p>\nand she went over a year without a seizure.\u00a0<\/strong><\/p>\n(beat)\u00a0<\/strong><\/p>\nBob: And then I changed jobs.\u00a0<\/strong><\/p>\nClaire: <\/strong>Which had an unexpected consequence. As Bob learned when it was time to refill Mary\u2019s prescription for Clobazam.\u00a0<\/p>\nBob was used to paying around 15 dollars.\u00a0<\/p>\n
Bob: This time the pharmacist comes out and says, Hey, your, your Clobazam is gonna be $500.\u00a0<\/strong><\/p>\nClaire: <\/strong>Ok, so\u2026Dan, let\u2019s take a step back. Bob changed jobs, and suddenly Mary\u2019s Clobazam is $500. Because\u2026\u00a0<\/p>\nDan: <\/strong>Bob\u2019s new job <\/em>meant\u2026 a new insurance plan <\/em>for the family. And\u2026\u00a0<\/p>\nClaire: <\/strong>Every insurance plan <\/em>has its own list <\/em>of how much you pay for which drugs. And which drugs they don\u2019t cover at all. That list is called \u201cthe formulary.\u201d\u00a0<\/p>\nDan: <\/strong>That list, that formulary, is based in part on business deals that plans and drug-makers hash out behind closed doors.\u00a0<\/p>\nClaire: <\/strong>So when you change jobs, change insurance: the difference between what\u2019s on one formulary and what\u2019s on the next: It can be\u2026\u00a0<\/p>\nDan: <\/strong>unpredictable at best.\u00a0<\/p>\nAnd even if you don\u2019t change jobs, your job may change your insurance plan. That happens a lot.\u00a0<\/p>\n
Claire: <\/strong>And even if your insurance plan <\/em>doesn\u2019t change, that plan\u2019s formulary <\/em>can change from year to year.<\/p>\nDan: <\/strong>So, Claire, this seems like the first big lesson from Bob\u2019s story \u2014 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.\u00a0<\/p>\nBut it may not be just as good for YOU. That\u2019s a thing.\u00a0<\/p>\n
Claire: <\/strong>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.\u00a0<\/p>\nJust switching to whatever random thing the insurance company approves, that\u2019s not on the table.\u00a0<\/p>\n
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\u2019re like:\u00a0<\/p>\n
Bob: Oh, well that medication, , is only covered for a certain type of, of epilepsy\u00a0<\/strong><\/p>\nClaire: <\/strong>Which isn\u2019t the type they think Mary has. They\u2019re 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\u2019ve said \u201cno,\u201d but that doesn\u2019t mean he has to accept this as their final answer.\u00a0<\/p>\nDan: <\/strong>Yep, we heard from so many people \u2014 have heard over the years: This is a whole dance, a whole fight.\u00a0<\/p>\nClaire: <\/strong>Yep, and Bob\u2019s gonna take us through it. In fact, in this very same phone call where his insurance company said they wouldn\u2019t cover Mary\u2019s Clobazam, they basically invited him to this dance. They said:\u00a0<\/p>\nBob: Well, there\u2019s a prior authorization that can be filled out. We\u2019ll send that to your doctor.\u00a0<\/strong><\/p>\nDan: <\/strong>There\u2019s a prior authorization for that! We\u2019ll send that to your doctor!\u201d The way Bob says that, it sounds like the insurance person was so cheerful. Making things sound so easy.\u00a0<\/p>\nBut prior authorization\u2026<\/p>\n
Claire: <\/strong>That\u2019s a hurdle, a hoop for Bob \u2014 and Mary\u2019s doctor \u2014 to jump through.\u00a0<\/p>\nDan: <\/strong>This will be familiar to a lot of folks already, but: Prior authorization\u2026 PRIOR:\u00a0<\/p>\nClaire: <\/strong>Before the insurance company will pay for Mary\u2019s Clobazam, Dan: <\/strong>They have to AUTHORIZE it.\u00a0<\/p>\nClaire: <\/strong>her doctor has to make a case that she needs this particular treatment \u2014 and the insurance company has to decide the argument is good enough.\u00a0<\/p>\nDan: <\/strong>We see it all the time.\u00a0<\/p>\nClaire: <\/strong>Bob isn\u2019t thrilled by this requirement.\u00a0<\/p>\nBob: Seems unnecessary. This is a, you know, board certified pediatric neurologist who\u2019s been seeing this patient for years.\u00a0<\/strong><\/p>\nClaire: <\/strong>And who took her through a whole long trial-and-error process to find the right meds.\u00a0<\/p>\nDan: <\/strong>Because of Bob\u2019s confidentiality, his insurance company said they couldn\u2019t respond directly to his story \u2014 fair enough. But a lot of the time, Insurance companies say: Hey, we\u2019re just discouraging waste with these prior authorizations! Sometimes doctors do just prescribe an expensive thing, when something cheaper would be just as good. Okay.\u00a0<\/p>\nBut a lot of patients say, like Bob would: My doctors and I had already DONE all this checking.\u00a0<\/p>\n
Claire: <\/strong>Bob gets form sent in, but now he\u2019s got another problem. The insurance company needs time to evaluate the prior authorization. And Mary needs her drugs right now.\u00a0<\/p>\nBob: 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.\u00a0<\/strong><\/p>\nDan: <\/strong>That\u2019s a bad problem.<\/p>\nClaire: <\/strong>Luckily: Bob found a way to get Mary\u2019s Clobazam for less than five hundred dollars a week. We\u2019ll get into that a little later.\u00a0<\/p>\nBut for now, just to note: It\u2019s lucky he found that workaround. Because when Bob calls to check on the prior authorization\u2013 PA for short\u2013 Well, here\u2019s how he says the conversation went\u2026\u00a0<\/p>\n
Bob: \u2018Yes, we got the PA information. It was denied.\u2019\u00a0<\/strong><\/p>\n\u2018It was denied? What, uh, why was it denied?\u2019\u00a0<\/strong><\/p>\n\u2018Oh, well, again, it looks like it\u2019s only approved for this one particular type of epilepsy.\u2019\u00a0<\/strong><\/p>\nClaire: <\/strong>Which was just what they\u2019d said before<\/em>. Bob gets ready to appeal.\u00a0<\/p>\nAnd he says this is getting to him<\/em>. When we talked, he mentioned a lesson from this show:\u00a0<\/p>\nBob: I think you guys recommend this of like not losing your cool with the customer service people, in the insurance companies.\u00a0<\/strong><\/p>\nDan: <\/strong>We do. Everybody says: It really helps.\u00a0<\/p>\nClaire: <\/strong>And everybody knows. It\u2019s not actually always possible. Here\u2019s what happened the next time Bob calls his insurance.\u00a0<\/p>\nBob: They asked me, oh, how\u2019s your daughter doing? And I just remember saying like, you don\u2019t care how my daughter\u2019s doing. She\u2019s terrified. She\u2019s gonna be walking to class and have a seizure because she doesn\u2019t have the medication. So don\u2019t give me this BS about how\u2019s my daughter doing.\u00a0<\/strong><\/p>\nDan: <\/strong>Bob seems like a pretty level-headed guy.\u00a0<\/p>\nAlso \u2014 we\u2019ve kind of withheld this until now\u2013 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.<\/p>\n
He\u2019s got the advantage, in terms of keeping his cool, of not being in totally foreign terrain.\u00a0<\/p>\n
Claire: <\/strong>Yep, and he says he recovered his cool pretty quickly.\u00a0<\/p>\nBob: I pulled back at when I realized what I was doing. Like this isn\u2019t this person\u2019s fault. They\u2019re just probably reading a script.\u00a0<\/strong><\/p>\nDan: <\/strong>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 \u2014 and maybe we should do a whole show on this \u2014 is recovering. Because you\u2019re gonna have to get up and go again.\u00a0<\/p>\nClaire: <\/strong>Yeah, and we\u2019re just getting to the most <\/em>frustrating part. Dan: <\/strong>Right.\u00a0<\/p>\nClaire: <\/strong>After more than a month\u2013 and two rounds of appeals\u2013 Bob says Mary\u2019s Clobazam finally gets approved.\u00a0<\/p>\nDan: <\/strong>And this is the frustrating part because\u2026\u00a0<\/p>\nClaire: <\/strong>Insurance will <\/em>cover it now. But they tell him his share is going to be $150<\/em>. Remember, Bob said under his old insurance, it used to only cost $15.\u00a0<\/p>\nBob: So 10 times the price now, plus the price you know, of the other medications she\u2019s on.\u00a0<\/strong><\/p>\nDan: <\/strong>Yep. All this waiting, all this fighting, everything. And it\u2019s ten times more than he used to pay under his old insurance.\u00a0<\/p>\nClaire: <\/strong>It\u2019s less <\/em>bad\u2013 this <\/em>insurance originally was gonna make him pay more than 500 bucks. But yeah. Not great.\u00a0<\/p>\nDan: <\/strong>But Claire: this is not the end of Bob\u2019s story, right?\u00a0<\/p>\nClaire: <\/strong>Not even close.\u00a0<\/p>\nBob: What this sparked us to do is to look at, well okay, if it\u2019s not going to get approved, what are the other options?<\/strong><\/p>\nClaire: <\/strong>We\u2019ll get into <\/em>those options\u2013 after the break.\u00a0<\/p>\nDan:<\/strong>This episode of An Arm and a Leg is produced in partnership with KFF Health News. That\u2019s a nonprofit newsroom covering health issues in America. Their reporters win all kinds of awards every year. We are honored to work with them.\u00a0<\/p>\nSo, 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.\u00a0<\/p>\n
Claire: <\/strong>Yes, and now he\u2019s going to work a whole different strategy: Ignoring his insurance. Because there can <\/em>be better deals elsewhere. Bob starts with GoodRx.\u00a0<\/p>\nDan: <\/strong>Lots of people know it \u2014 it\u2019s a website where you tell them what drug you need, and they\u2019ll show you deals \u2014 discounts \u2014 at local pharmacies.\u00a0<\/p>\nWhich 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.\u00a0<\/p>\n
Claire: <\/strong>Bob says he got mad because of who <\/em>recommended it to him: a rep from his insurance company.\u00a0<\/p>\nBob: Like you\u2019re my insurance company. Why? You\u2019re, that\u2019s what I pay you for.\u00a0<\/strong><\/p>\nClaire: <\/strong>Right? he pays them premiums so he can pay less for health care, including medicine. But he didn\u2019t write it off. And he says now, it was actually useful: even though he knew about GoodRx before, he wouldn\u2019t have thought to go there.\u00a0<\/p>\nBob: 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\u2019s what you use if you don\u2019t have insurance.\u00a0<\/strong><\/p>\nDan: <\/strong>Interesting! And in one sense, he wasn\u2019t wrong: When you use a GoodRx discount, you can\u2019t use your insurance too. But it turns out, even when you have insurance, GoodRx can be worth looking at.<\/p>\nClaire: <\/strong>Yes, and here\u2019s what makes Bob\u2019s story stand out \u2014 the reason we wanted to really dig in. It\u2019s what he did next. Because he didn\u2019t just look at GoodRx. He started exploring a whole world of options. Actually, worlds.\u00a0<\/p>\nOne is the world of sites LIKE GoodRx.\u00a0<\/p>\n
Dan: <\/strong>Ooh, I\u2019m googling \u201csites like GoodRx\u201d \u2014 here\u2019s SingleCare, RxSaver, BuzzRx\u2026\u00a0<\/p>\nClaire: <\/strong>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.\u00a0<\/p>\nBob: 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.\u00a0<\/strong><\/p>\nClaire: <\/strong>And: Once Bob started looking at THIS outside-insurance world, started exploring others. Like Cost Plus Drugs.\u00a0<\/p>\nBob: And \u2013What was really sort of eye-opening to me is they did so much better than our insurance company did.\u00a0<\/strong><\/p>\nDan: <\/strong>We should really talk about Mark Cuban Cost Plus Drugs, to use its full name. It\u2019s pretty different.\u00a0<\/p>\nClaire: <\/strong>Right. The celebrity owner.\u00a0<\/p>\nDan: <\/strong>Mark Cuban is basically famous for being rich. Like he owns the Dallas Mavericks basketball team.\u00a0<\/p>\nClaire: <\/strong>And he\u2019s spent 15 years on the reality show Shark Tank. [THEME]\u00a0<\/p>\nDan: <\/strong>It\u2019s like American Idol for startups. People pitch their business to investors who might offer to buy in, on camera.\u00a0<\/p>\nTV announcer: Mark Cuban has just made the largest offer in Shark Tank history.<\/strong><\/p>\nMark Cuban: Lemme ask you a question. If I offered you $30 million for the company, would you take it?\u00a0<\/strong><\/p>\nClaire: <\/strong>All of that, but the celebrity factor isn\u2019t really what makes Cost Plus different: The company buys meds direct from manufacturers, and adds 15 percent to their wholesale cost.\u00a0<\/p>\nDan: <\/strong>Plus shipping fees, and five bucks for \u201cpharmacy labor\u201d. Claire: <\/strong>Bob added CostPlus to his spreadsheet. And he liked what he saw. Bob: It\u2019s very transparent and super low cost.\u00a0<\/strong><\/p>\nClaire: <\/strong>He asked Mary\u2019s doctors to transfer two of Mary\u2019s prescriptions.\u00a0<\/p>\nDan: <\/strong>But not all of them. Cost Plus doesn\u2019t carry everything. For one thing, they mostly only carry generic <\/em>drugs.\u00a0<\/p>\nClaire: <\/strong>And \u2014 what matters in Bob\u2019s case: they don\u2019t carry controlled substances<\/em>. Nobody sells them online because it\u2019s illegal to ship them. And Mary\u2019s Clobazam? It\u2019s a type of controlled substance: They\u2019re called Benzos.\u00a0<\/p>\nDan: <\/strong>Like Valium and Xanax.\u00a0<\/p>\nClaire: <\/strong>So for Clobazam, the best price he can find is 85 bucks, using GoodRx at Walmart.\u00a0<\/p>\n