Season 1, Episode 9 · Released November 3, 2026
Most of the time, the pharmacy benefit works out of sight. When Lu Ann Coe's mother needed weeks of IV antibiotics at home, the specialty pharmacy assigned by her plan's pharmacy benefit manager packed every box for the weather, kept count of her supplies, and once drove the medicine more than a hundred miles to make the deadline.
Terry Wilcox follows that box of medicine, then turns honestly to the patients for whom the system doesn't work that way, with the leadership of the Pharmaceutical Care Management Association answering in their own words on prior authorization, real-time benefit tools, TrumpRx, and what patients can do before they ever reach the pharmacy counter.
Go deeper: read Patients Rising's PBM Policy Deep Dive.
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This transcript has been lightly edited for readability.
Lu Ann Coe: And I'll tell you, even one day. They called me and they said, We're gonna have to drive this to you. We can't get it to FedEx fast enough. And they actually put someone in a car and drove, I think from Smithfield to Greensboro, it's maybe a hundred and forty, fifty miles. They drove it to me.
Terry Wilcox: That's Lu Ann Coe. A few years ago, her mother's specialty pharmacy put someone in a car with her medicine because a shipping truck wasn't going to get it there in time. I'm Terry Wilcox, and this is State of the Patient. This episode is about pharmacy benefit managers, the companies most of us know as PBMs, and it may not be the episode you're expecting. PBMs are the part of health care many patients love to hate. And some of that frustration has been earned. You'll hear me say so, but over the past several months I've had two long on-the-record conversations with the leadership of the industry's trade association, the Pharmaceutical Care Management Association, otherwise known as PCMA. And I came away wanting to understand this part of the system more. So today you'll hear from Lu Ann, from Brendan Buck, PCMA's Chief Communications Officer, and from the PCMA leaders who joined our community for a live town hall. We're going to follow one box of medicine from a specialty pharmacy into a caregiver's hands. Then we're going to talk honestly about the times the system doesn't deliver like that, and about what you can do before you ever get to the pharmacy counter. When I asked Lu Ann how she wanted to be introduced, she didn't say patient advocate, she said caregiver, and she called it the hardest title she has. Her mother has lived with rheumatoid arthritis for more than 45 years. In 2021, a serious infection put her on the road to surgery, and before any surgeon would operate, that infection had to be cleared at home.
Lu Ann Coe: So my mom back when she was 40, which was over 45 years ago, she was diagnosed with rheumatoid arthritis, which was really, really hard for someone in their 40s and she just went downhill quickly. She was on infusion treatments for many, many years. And then she really went down in 2021. She was diagnosed with diverticulitis and we had to see an infectious disease physician who created a cocktail for her infection that started a lot of home therapy, home health therapy. They had a port in her and I had to learn how to do that infusion of antibiotics myself. She was on Medicare Advantage. She had a health plan. It was, you know, a Medicare Advantage plan, but they're also in the commercial space. And they had a relationship with a PBM. And the PBM is the one who assigned the specialty pharmacy. They're probably less in your community than a compounding pharmacy is, even. My mother was in Smithfield, which is Johnston County. Her specialty pharmacy was in Guilford County, which was four counties away, in Greensboro. So you know, just the logistics of moving the medication from them to us was really intensive. How they had to be packed, how they had to be temperature controlled, how they take into account the weather forecast so they know how to pack this stuff up.
Terry Wilcox: A quick word on who's who, because it matters for the rest of this episode. Lu Ann's mother had a Medicare Advantage plan. That plan, like most health plans and most employers, hires a pharmacy benefit manager to run its drug benefit. The PBM helps decide which medicines are covered, negotiates prices with drug makers, and builds the network of pharmacies you're allowed to use. For medicines that have to be kept cold, handled carefully, or given through a line, that network includes specialty pharmacies. And they are not on every corner. Tim Dube, who leads policy and regulatory affairs at PCMA, explained at our town hall why the job exists at all.
Tim Dube: Keep in mind there are more than 20,000 FDA-approved drugs on the market. They all have different indications, different prices. There are brands, generics, biologics, biosimilars. It's all very complicated. Some drugs work better than others, and some work better in some diseases than in others. If you're an employer or you run a government program like Part D or Medicaid, how do you sort through all of that? Where do you start? How do you decide what's worth covering, what the value of something is, and how to stack it all together? That's why PBMs exist.
Terry Wilcox: Here's what struck me most about Lu Ann's story. She knew more than most caregivers about how this works, and she still didn't expect what came next.
Lu Ann Coe: But they were always calling me, like every other day. How many syringes do you have left? Do you need alcohol wipes? I mean it was a constant conversation with them. Like sometimes you thought, like, okay, you called me two days ago. But at the same time, it was reassuring to know I didn't have to so much keep count. They were keeping count, right? I had enough on my plate. That was the brilliant part. I didn't call anybody. They called me. They reached out to me. And I mean, her physicians, her Medicare Advantage Plan, her insurer, they all had this mapped out. They knew who they needed to call, they knew how they needed to get it started. They just had to pull me into the loop and say, You're gonna get a box and it's gonna have all this packed ice in it, you know. And this is how you're gonna empty it. And they really held my hand the entire step of the way. Within a week, the infection was back worse than it was before. So she had to go on another 30-day dose of the specialized antibiotic. You know, by then I'm ready to pull my hair out. But they were there every step of the way. And over the holidays, this also happened the second phase, the second month happened as the holidays were coming along. And so they said, okay, we've got to change the delivery system for you because the syringes are only good for so many days. Again, they were always thinking ahead. I mean, it was really like a military exercise if you really wanted to get down to it. They were making sure I had the weapons I needed to fight the infection. It was less stressful knowing that I had someone with that kind of experience and that attention to detail in my corner. That really helped lessen the stress of it.
Terry Wilcox: After a second month of treatment, Lu Ann's mother made it to surgery. What stays with me about her story is how little of it she had to fight for. No one had to explain to her that the pharmacy benefit was working. It simply worked, mostly out of sight. When I sat down with Brendan Buck in October, he put words to the gap between how the system is designed and how it actually feels.
Brendan Buck: Yeah. I mean there's theoretical healthcare and then there's real life healthcare. And those two things can be very different and sometimes system designs can feel very differently in the theoretical level versus the actual patient experience level. And there can be good reasons why things are the way they are. But that doesn't mean they always work every time for everybody.
Terry Wilcox: That's the honest place to stand. For a lot of people, the pharmacy benefit is invisible in the best possible way. And my own mother is one of them. I said so on the record when we opened our town hall with PCMA. But I also said this.
Terry Wilcox (at the town hall): However, for the sickest among us — the patients with the highest costs, the most complex regimens, the smallest margin for delay — the system has too often delivered something different: denials, prior authorizations that stretch into months, formulary changes mid-year, lost records when coverage shifts, step therapy applied to patients who have been stable on a drug for a decade, peer-to-peer reviews staffed by clinicians outside — and sometimes way outside — the relevant specialty. For some patients in our community, managing their PBM has become a part-time job: hours on the phone, letters of medical necessity, appeals, re-justification every six months for medication they've been on for years. The consequences have been serious, in some cases devastating. Our community has lost loved ones to delays and denials.
Terry Wilcox: If you are one of those patients, you have earned your skepticism, and nothing in this episode asks you to set it down. I will give PCMA credit for this though. When David Marin, the association's president and CEO, opened the town hall, he didn't pretend otherwise.
David Marin: But here's what I also know: our association has not been the partner that many need us to be — pharmacists, employers, policymakers, and most importantly, patients.
Terry Wilcox: When I pressed the panel on cases where patients had paid many times what a medicine should cost, Amanda Frost, PCMA's head of research, didn't dodge it.
Amanda Frost: I'm going to start with this: PBMs do lower drug costs in the system. But there are examples — and you've identified some — where this is not true. We've seen these, and we're as concerned and frustrated about those examples as you are. But the industry is moving. When we identify these examples, I think what you've seen is our PBMs move to fix them. This has been changing, and I hope it will continue changing. I do believe these types of examples are extremely rare. They should be rare, and we should fix them when we find them.
Terry Wilcox: For most patients, that pain lives in prior authorization, the approval your plan requires before it will cover certain medicines. More of the questions our community sent in before the town hall were about prior authorizations than almost anything else. And the hardest ones came from people re-proving the same diagnosis every six months for a medicine they've taken for years. I asked Brendan what the industry is doing about it.
Brendan Buck: It's a robust discussion, absolutely, because we know that's where the biggest pain point for patients is. But what we can do is try to reduce the times that is necessary, have very clear systems for when it is needed, that people know where to go, that we're communicating very clearly what the steps are and where you are in the process, and maybe most importantly, reducing the time. We don't want this to be somebody, as it's been said, somebody's part-time job is figuring out how to get through the system. That doesn't work for anybody, it's not efficient for anybody, and it can cause incredible stress.
Terry Wilcox: At the town hall, Tim Dube put the problem a little more bluntly.
Tim Dube: The worst version of a prior auth is one using a fax machine, and we would love to get rid of those things. There's that famous scene from Office Space — a movie from 1999, by the way — where they were so fed up with the fax machine that they took baseball bats to it. Twenty-seven years later, your doctor's office still has a fax machine to do prior auths. That's got to stop, and our industry is committed to making that happen.
Brendan Buck: This is another area where we need provider adoption of these e-prior auth systems. We've seen that the approval times drop dramatically. It's an average of only about five and a half hours to get approval for something when a doctor is using an e-prior auth system. Maybe five and a half hours still feels like more of a hassle than you would like, but that's all that we're talking about.
Terry Wilcox: Five and a half hours is PCMA's figure for electronic requests. And I'll take it, because I've heard patients describe the same process in weeks. But notice the catch in both of those answers. The fast version only works when your doctor's office is plugged into it. Which brings me to the part of this episode that is really for you. I asked Brendan what patients can do on their own, starting with the moment that frustrates people the most, finding out what a medicine costs only when you're already standing at the counter.
Brendan Buck: It may be the only part of our entire economy where you have no visibility in some cases how much something is gonna cost until you're asked to pay for it. It's maddening. But the good thing is it doesn't have to be that way and in a lot of cases it isn't. Every one of our companies, the PBMs, have invested a significant amount of resources in producing systems, online system technology, where any doctor can plug in and see what are the options available, what's covered under this patient's benefit, where can they get it, at what pharmacy and at what cost, and again what else is out there. You don't need to wait until you get to the pharmacy.
Terry Wilcox: Those are called real-time benefit tools. While you're still in the exam room, your doctor can see what your plan covers, what it costs, at which pharmacy, and whether a lower cost option would work just as well. Not every office uses them. So I asked Brendan the obvious question, can patients simply ask?
Brendan Buck: Yeah. You're asking the right question. That is where to start, to ask that question. Absolutely. And there are low barriers to entry to getting into these systems. It's not difficult. And so yes, if your doctor is not using those systems, you should ask. And in a lot of cases it's pretty easy for them to do so, to get into them and understand what the options are. So, you know, at the policymaker level, of course we're promoting incentives to get them to do this, but you know, the greatest incentive may be just the demand from their patients who are starting to ask those questions. And as patients are more informed consumers of their own care, that's the kind of thing they should be thinking about. You don't need to be blindsided. Talk to your doctor on the front end and see what your options are.
Terry Wilcox: Lu Ann did exactly that with a prescription of her own.
Lu Ann Coe: I have asthma and it's not horribly bad. It's just every now and then temperature changes, you know, something like that'll kick it off. But my doctor had given me an emergency inhaler and she gave me a name brand, which was fine, I don't care. Until I saw how much it was. And I called her and I said, we gotta find something else. And she did. She started researching and found me something that was just as good. And it was a whole lot cheaper. Of course there's those situations where there is nothing else, right? Those acute situations where there is nothing else. But something like that, you can shop.
Terry Wilcox: There's a limit to that advice, and I said as much to Lu Ann.
Terry Wilcox (in conversation with Lu Ann): Look, sometimes the only medication that's gonna work is the one that's a zillion dollars. It's the only one that works for them. They're scared to go off of it. It took them years to get it right with their immunologist. It's a whole thing. Or their endocrinologist or whoever they're seeing.
Terry Wilcox: There's also a new number showing up in the tools your doctor and your plan use. And it comes from the White House. Early this year, the administration launched TrumpRx, a website where drug makers sell some of their medicines directly to patients at cash prices. And a number of manufacturers have signed on. This summer, PCMA's member companies also agreed, working with the Centers for Medicare and Medicaid Services, otherwise known as CMS, to show the TrumpRx price right next to your plan's price in their tools. What strikes me is that drug makers and now PBMs are working with this administration toward the same thing: letting patients see a price before they pay it. Brendan was candid that the plan price will usually still be the better deal.
Brendan Buck: That's right. Yeah, that's right. All of our digital tools, the intent is to make sure that when your options for where you can find a medication and what it will cost will also include TrumpRx as an option if that medication is on TrumpRx. We think that most of the time it's still gonna be a better deal to get your medication through your pharmacy benefit. But there may be cases when TrumpRx is a better deal for people. And if that's the case, that's great. And they should know that and they should be able to choose accordingly. That is one element of our commitment to transparency that we think is important. If we're all in on transparency, we're all in no matter where it comes from.
Terry Wilcox: At our town hall, David Marin said the administration has been pushing in the same direction.
David Marin: There's encouraging conversation going on right now, including from the administration, on promoting and advancing the use of real-time benefit tools. We support that 100%. It's what our companies do.
Terry Wilcox: One practical note. Cash prices change. And depending on your plan, a cash purchase may not count toward your deductible. So look at both numbers before you choose. Once you've left the doctor's office, your plan almost certainly has an app or a website that shows what a medicine will cost at different pharmacies. And Brendan's last piece of advice may be the simplest one in this whole episode. Find out who your PBM is.
Brendan Buck: And it should not be hard to figure out who your PBM is. It's not a secret. We just often operate in the background. And a lot of times people don't know that it was a PBM that you know made it possible that they got a relatively low copay or out-of-pocket cost and they went and filled out the prescription and there were no problems and it's no big deal. But if you're running into issues, it should not be difficult to figure out, working through your health plan, your employer, your union, your government plan, who that actual company is, and every one of them has people there who are there to help figure out whatever your challenge is and get you where you need to go.
Terry Wilcox: It also helps to know who your PBM actually works for. Lucia Lebens, PCMA's Chief Government Affairs Officer, explained it at our town hall.
Lucia Lebens: Our main clients are employers, governments, unions, and the like. They go through an RFP process with us every two to three years. I'm seeing questions about who decides the formularies — that's why you see a vast difference in what you might have covered versus your friend versus your parents. It's about where their insurance is, and what the employer or union has decided they want to focus on. Dave touched on this at the beginning — asking your employer or union why certain decisions have been made.
Terry Wilcox: So, if your coverage comes through work or a union, your benefits office is part of this conversation too, and you're allowed to ask it why a medicine is covered the way it is. So here is what I'd take from all of this. Before a new prescription is sent, ask your doctor to check your benefit and ask whether a lower cost option would work as well for you. If the answer is no, that is a real answer, and you shouldn't feel pushed off a medicine that works. Look up the name of your PBM and its patient support number now, while you're calm, because the worst time to go searching is at the pharmacy counter. And if you're on a specialty medicine, get to know your specialty pharmacy. Lu Ann's did a lot of the counting for her, and that's worth having in your corner. At the end of our town hall, I asked David Marin whether this was a one time event or the start of something.
David Marin: I sincerely hope this is the start of an ongoing conversation and a partnership. Obviously you all have a ton of questions, many of which we couldn't get to today. Our commitment — and my team's going to curse me for this — is to answer as many of them as we can in the coming days and weeks. You have my commitment for that; give us a little bit of time.
Terry Wilcox: We intend to take him up on that, and we'll bring what we learn back to you. We've just launched our PBM policy deep dive on our website, which you can find in the show notes. I'll leave the last word to Lu Ann, because the medicine was only half of what she was carrying. Her mother is still living, now in assisted living, and Lu Ann is still her caregiver.
Lu Ann Coe: There needs to be a really good program for burnout on caregivers because my mother's still alive. She's finally got her into an assisted living facility. I had to fight tooth and nail to get that done because of external family and everyone has their own opinion, but they don't want to do the work, right?
Terry Wilcox: She's right, and it's a subject that this show will keep coming back to. I know a little about it myself. I cared for my stepmom through Alzheimer's until we lost her this summer, and I cared for my mother-in-law in our home as well, until early last year.
Lu Ann Coe: It's you know, from one caregiver to another. You get it, I get it. I know what you went through, you know what I'm continuing to go through.
Terry Wilcox: Thank you to Lu Ann Coe, to Brendan Buck and to the whole PCMA team for showing up and taking our questions. We're gonna keep asking them. I'm Terry Wilcox. This has been State of the Patient. No one applies for this job. The system hands it to you. So take it. Be the CEO of your own health care, and your family's, because there's no plan and no helpline coming to save you.