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Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hope Charities
Healthcare in Crisis: The Truth About PBMs with Dr. Madelaine Feldman
Dr. Mattie Feldman, rheumatologist and healthcare policy expert, exposes how Pharmacy Benefit Managers have evolved from administrative entities into powerful forces that control medication access, often prioritizing profits over patients.
• Pharmacy Benefit Managers (PBMs) originally handled prescription coverage but now control what medications doctors can prescribe and patients can access
• The "big three" PBMs—CVS Caremark, OptumRx, and Express Scripts—now control 80-85% of all prescriptions in the United States
• PBMs often prefer higher-priced medications because they generate larger rebates, contributing to rising drug costs
• Vertical integration has created conflicts of interest where the same companies own insurance plans, PBMs, specialty pharmacies, and sometimes even drug manufacturing
• Utilization management tools like step therapy and prior authorizations have become barriers between doctors and patients
• PBMs force patients to use mail-order specialty pharmacies that often provide inferior care compared to community specialty pharmacies
• Legislators are working on bipartisan bills like "People Before Monopolies" that would require PBMs to divest from pharmacy ownership
• Patient stories and advocacy are crucial for creating meaningful change in the healthcare system
Share your pharmacy access or medication challenges with us by emailing info@hope-charities.org to help drive policy change.
Welcome to the Hope Podcast. My name is Jonathan James and I am so thankful that you're here to listen today about healthcare initiatives that are so important to our community of people living with bleeding disorders. I'm really thankful for our episode sponsor today, genentech, for sponsoring this moment, as well as many others, to bring more educational content to help you understand more about bleeding disorders and the issues that matter most to us. Today. I am really excited to bring a friend of mine to the conversation to talk a little bit more about PBM reform, specifically what specialty pharmacies and the limitations thereof accessing those pharmacies has really meant to our community and many others who are dependent upon high-cost medications and the challenges that we've experienced with accessing those medications on a regular basis. Dr Maddie Feldman, it is great to see you today. Thank you so much for joining me with the Hope Podcast.
Speaker 2:Thank you for having me. I'm really excited to be here.
Speaker 1:Well, I have to say, we met each other at an event that we were both mutually speaking at and I heard your presentation and was just floored.
Speaker 1:I was blown away.
Speaker 1:We've had a lot of pain points as it pertains to specialty pharmacy access, through some of this PBM issues that we've experienced, the vertical integration, and when I heard your presentation I just was.
Speaker 1:I really had not heard you speak before and in that moment I just was, so I couldn't take notes fast enough and I was like writing frivolously and just really just couldn't keep track of it all. And I know I came up and spoke to you and then we've just stayed in touch ever since. So we're almost two years ago, and so it's been just beautiful time to be able to really learn more from you, and you've been a teacher to me, even if maybe it hasn't been positioned that way. You've really helped me understand even more about the very thing that's so important to us as a community. So really thank you for all the efforts that you've made so far to really influence change in policy and continue to really be a voice of not only reason but a voice of expertise specifically dealing with these types of issues. It's so important the work that you've done and we really appreciate it.
Speaker 2:Well, thank you, thank you. I look at it as a voice of maybe, hopefully, common sense and a lot of passion behind it, so true.
Speaker 1:Well, a lot of people who are listening today probably haven't heard from our audience, at least from you, in the past, and so I'd love to talk a little bit about your background as a rheumatologist and also your work as a physician treating in Louisiana, right here in our own backyard. So tell us a little bit about how you got started, why you became a physician to begin with and kind of what your background is and what you're doing now.
Speaker 2:So well as your listeners may know, a rheumatologist takes care of autoimmune diseases, particularly ones that manifest with arthritis and maybe some skin problems. But we overlap with autoimmune diseases both in neurology and gastroenterology, so we do have the run the gamut, but again it's chronic disease. How I ended up in medical school is a different story altogether. I went into college as a theater major and, yes, and actually I finished as a theater and biology major.
Speaker 1:So at the time.
Speaker 2:You know, my brother was a few years older than I was and he was the one that was going to be the doctor in the family you know the valedictorian, every father's you know child that was going to be the doctor to school undergrad at Newcomb, which back then was the Women's College of Tulane. So I would take her to her appointments and I don't know if you know, but back then they didn't want to give cancer patients pain medicine, sleeping medicine, for fear they'd get addicted. So when I'd take her and I'd see the condition she was in and I don't blame the physicians, but I just sort of felt like you know, I'm pretty smart, I've always gotten straight A's. You know, if my brother can do something like that, I could actually be a doctor. I mean, I know it sounds bizarre, but at that point I started doing my pre-med requirements and here I am today.
Speaker 1:Wow, that's amazing. What an incredible journey.
Speaker 2:It has been, and I think you know everyone who becomes passionate about an issue. There's usually some connection. You know it could be a family connection, it could be a friend connection, it could be a fear because something runs in your family, and so you know there was that initial family connection right there.
Speaker 1:I love that. It's part of the reason, probably why you're so empathetic and you really are drawn into it. For those reasons I take a lot of heart to that. I didn't know that part of your story, but learning that today I was actually a music major in college, went to school for music education and later needed a real job to make actual living when I got married and started having kids and realized that so I got into finance, which is also kind of mathematical I guess, with music. But and then never in a million years thought I'd be doing what I am today, with policy work and doing so much for patient advocacy and financial assistance. But having been born with hemophilia, grew up through so many ups and downs and saw the community go through so much that I was always advocating where I could in my spare time and really just, you know some things. You know you try to choose it, but some things choose you and I feel like that way and it sounds like that was the same with you.
Speaker 2:Yeah, and I think I may have told you when we first talked that you know I had a medical school friend of mine who had hemophilia and this was back in the day and basically he was getting factor VIII and he got HIV and passed away during medical school. So I have a real soft spot in my heart for hemophiliacs and the treatment and everything Well it was meant to be. I knew we were related somehow so that's awesome.
Speaker 1:Well, I know one of the things that you've been a driving force for in so much of just your work and your passion has been dealing with high-cost medications and trying to get through the hurdles.
Speaker 1:I think in rheumatology there's a lot of challenges that we have been sort of blessed in hemophilia not to have to deal with some of the things dealing with, you know, biosimilars and generic drugs and then also some of the step therapy problems and other issues that we've been very, very keeping, keeping a close eye on and even participating with a lot of the, you know, legislative work that's been done in some of those categories, just because we know that we're we're really a half a step away from that really happening to us too, and and so so it's super important. But one of the things that I'm just really we've been obviously very outspoken about how much vertical integration has really harmed so much of patients' access, especially in rural communities, getting access to so much of the education, the supplies, making certain that they get their medications in a educated format, where it's not sitting on the porch getting hot and not being able to you know, and going to waste.
Speaker 1:So much abuse really that's happened in the space when you have these sort of big box stores, if you will, that are sort of shipping from a far distance away to your medication. So those things are near and dear to our heart as a community and you just have so much understanding and context about the back end of what these things are. But I kind of want to start from like a really super 30,000 foot view, high level perspective. Some listeners today may not even know what PBM stands for or what it means exactly, may have been impacted but don't know the details. So if you could, just to help all of us to understand a little bit more of what is a PBM and a little bit of context of how that came about, Well, I'm old enough to remember before PBMs really became in vogue I went out into practice, let's just say around 1990.
Speaker 2:And that is the sort of like right in the beginning of the burgeoning of biologics to treat rheumatoid arthritis. You know, we had there for a while. We had, you know, back in the 50s and 60s, was maybe steroids and aspirin, and then we gradually got methotrexate. And then in the 90s there were lots of other drugs that were now becoming expensive. We did have another small molecule called Areva and it was $400 a month and we just went oh my God, that is so expensive. And now $400 a month seems like nothing.
Speaker 2:So what happened was we were used to having insurance companies cover the doctor's office, surgeries, visits, outpatient and inpatient, and then all of a sudden, as drugs became more expensive, they didn't want to handle that. So they started getting these entities started coming about. That were pharmacy benefit managers, meaning we will handle those prescriptions, we will handle the insurance for them, we will pay for and basically now we'll have a pharmacy benefit that can be associated with a medical benefit. But generally the pharmacy benefit was a separate company from the medical benefit. You'd have Blue Cross over here and then Express Grips, which was the pharmacy benefit. They weren't owned by the same company.
Speaker 2:So then through the 90s we had, at least in the rheumatology space, a number of biologics that came to market, both the kind that are given in the provider office through the vein and then also ones that people would inject themselves. And they were, you know, when they came to the market it was, like you know, $1,000 a month. Oh my God. Well, that same drug now is $9,000 a month. So anyway, so as drugs became more and more expensive, they went to the pharmacy benefit folks to say you know, we really think you need to create a list of drugs that will be covered. That list of drugs that will be covered is called the formulary.
Speaker 2:So, if you have insurance, you know you have to go to your formulary because those are the drugs that are covered. When I go and testify before legislators I keep hearing we need more competition. Let me tell you if you're a manufacturer and you make an expensive drug, if it's not on the formulary no one and I mean no one will get your drug, unless, of course, you get it through for free or you know it's given to you by the manufacturer. So the competition to be on that list of drugs to be covered is fierce and let's just say the pharmacy benefit managers have taken advantage of that competition and what happened was the manufacturers were not bidding on the lowest price, they were bidding on the highest kickback. So whoever would give the most money to the PBM, they would get the place on the formulary.
Speaker 1:Pay to play.
Speaker 2:Something happened in the 90s that made that possible. Normally, if you're dealing with any kind of health thing, you can't give kickbacks because there's something called an anti-kickback statute. Well, the federal government, in all of its wisdom, said why don't we give health insurance companies and pharmacy benefit managers safe harbor, like a get out of jail free card from the anti-kickback statute? Consequently, the manufacturers could give as much kickback as they wanted and it wasn't against the law. So now we're moving into the early 2000s and you want to be preferred and another drug wants to be preferred. Well, I'm $1,000 a month and I'll give you a rebate of 50% every time you fill that script. And the other one they don't know, but they're kind of surmising. Well, I'm in competition, I need to give them more. That drug was $1,000 a month, my competition last year. Okay, so I'm going to go to the PBM with a $2,000 a month drug and I'll give them 50% kickback. So which drug are they going to pick?
Speaker 2:The more expensive.
Speaker 2:Now they call that saving more money and that's sort of like, you know, if I wanted to go buy a dress and there's a hundred dollar dress and it's on sale for 50% off, and the exact same dress maybe is $500 and it's 50% off and maybe I like that one a little bit better, I'm going to this is going to sound very sexist, but I'm going to buy the $500 one and tell my husband look, I saved twice as much money on this one. I don't talk about what it costs, I talk about what I saved.
Speaker 2:And that's what the PPMs do. They talk about saving. So what has happened over the years is these rebate percentages have gotten higher and higher and then the drug companies raise the price of their drug in order to cover, I mean, sometimes they give 80, 90% back to the PBM and the PBM just touts the savings. Look at what we've saved the country and the PBM just touts the savings. Look at what we've saved the country. So, consequently, over the years, drug prices have gone up. Pbms became money-making machines and then that's how we got to the vertical integration.
Speaker 2:All the medical insurance companies everybody wanted to own a PBM because they made so much money. They did no research, they didn't even take control of any drugs. They just set up the formulary, which tells the doctor what drug they can prescribe, tells them when they can prescribe it, tells the patient how much they're going to pay and where they can pick it up from. So you know, unitedhealthcare got into the PBM business pretty early on, when they bought a company called Catalyst and then that sort of turned into OptumRx, which was their PBM. Then we have CVS Health. They were a PBM, cvs Caremark was a PBM and they in 2019, managed to cobble together like $80 or $90 billion to buy Aetna. So now they had their own insurance company.
Speaker 2:And then, finally, there was a little Express Script sitting out there and I think it was 2017 or 18. They were number 16 or 17 on the Fortune 500. All they did was make formularies and decide what, when, where and how much for patients they would get it, and they were number 17. How do you make that much money when you don't do anything else? So Cigna said hmm, I think we need to own a PBM too. So they bought Express Grips at 2019. And since then we have. That's what the vertical integration is. I look at it as you've got the judge, the jury and the executioner all in the same company. So you've got your medical insurance, you've got your pharmacy insurance. Now they all have their own specialty pharmacies. Now some of them have banks, they have data companies, they have you name it, and UnitedHealthcare owns more doctors than any other company in the in the country.
Speaker 1:So that's probably made America great has been this sense of capitalism that actually built the country and in in many industries. What's made American healthcare so terrible is actually the same thing. It's the capitalistic nature of what's driven this. I actually um was fortunate enough to be able to do a congressional briefing last year on the topic of um specifically, we were talking about sort of PBM reform and on the topic of, specifically, we were talking about sort of PBM reform and what the context of this was. But I actually highlighted the top three drug manufacturers in our country have actually, over the last five years, have lost money. They actually have not made a gross net return, if you will, but the top three PBMs have made well over 100% return in many cases over the last five years.
Speaker 1:And so there is this debate about, like, well, high cost medications. This is, you know, high cost drugs. This is where the problem is. But if you look at, like the Kaiser Family Foundation results of their whole healthcare expenditures in the United States, roughly only 13% of total healthcare costs is actually spent on pharmaceutical medications specifically, but whereas hospitalization and inpatient and outpatient care is nearly half of the total expenditure. So when you start talking about things that are really grossly making all this wild amounts of money and costs. It's actually the middlemen that's caused a lot of the problem in this space, and yet it's still not the biggest problem when you compare it to hospitalization and some of the other expenses. So it's super interesting to me that these sort of almost empires have been built as middlemen in a way that have been predominantly.
Speaker 1:No wonder the insurance companies wanted to purchase them and also force place their, their members to actually have to use their pharmacies was because they were actually that was the only piece of the business that was actually probably even really that profitable. Yeah, and it was very profitable, Right.
Speaker 2:PBMs are very profitable. You know the way I look at it is in terms of drug pricing. You know there are no innocents. I'm not shifting the blame from pharmaceutical manufacturers to PBMs. I'm sharing the blame. Everyone knows they point their fingers at each other. The PBM says they set the prices and the manufacturer says but they make us raise the prices. And both of those are true. And then what the PBMs have done in order to keep the formulary profitable, they use what are known as utilization management tools. It's three words that to most people it's like this and in fact, when I first heard the term in the early 2000s, I went I don't care, I'm busy taking same thing with the acronym PBM and even specialty pharmacy, all of that.
Speaker 2:I said I'm busy taking care of sick patients, I don't care about all these acronyms. Well then, next thing, you know, the PBM comes into my exam room and comes in between me and my patient because I would say, okay, you know, we've come to a diagnosis. It looks like you've got rheumatoid arthritis. I think this would be. Let's talk about your lifestyle, let's talk about the rest of your medical history and figure out what would be the best drug for you. And we'd come up with it. And then I'd go to my biologic coordinator. We didn't call him back then and he'd go oh no, the insurance company won't pay for that. So then I'd have to go back into the exam room and say because I just built it up, this is going to be a great drug. It's safe, it's going to work fast. Da, da, da, da da. And then I'd have to go back in and say, oh, I'm sorry, I can't give you that drug. Your insurance wants you to take these two drugs first, and that's known as step therapy, or fail first.
Speaker 2:And initially, when that came out, it was fine because it would ask patients to take generic drugs and that made sense. But in rheumatoid arthritis and lupus, my patients have already gone through those. And then I would have to give the biologic, for example, the expensive drug that they made more money on. And then the very next year the competitor would give them more money, so I'd have to switch my patients over to a different biologic, and they can do this up to three times a year. So what started off as a money-making entity has turned into a. Now they come in between the doctor and the patient. They make the medical decisions but have no liability for the choices. And they say doctor, we're not telling you what drug you can prescribe. You can prescribe whatever you want. We're just telling you what we will pay for you want. We're just telling you what we will pay for. Well, when drugs are anywhere from, I mean, you probably know the data anything over $150,.
Speaker 1:People just don't even show up at the drugstore. It's 85% failure rate at the point of sale if they are more than $100. There you go, it's wild how many people, just absolutely just as soon as they hear that, because people, you know, it's a statistic, I think from one of the main news networks actually I think CNBC reported that the average American today cannot afford a $400 emergency bill. Especially considering inflation now and so many other things, People are on a very vulnerable stretch financially.
Speaker 2:So essentially, yes, they are determining what I can prescribe Because the patient.
Speaker 2:if they can't afford it, they're not going to take it. So now we've run into, you know, the step therapy, and it used to be prior authorizations, which is another thing that you know. We have prior auths for imaging, prior auths for surgery, prior auths for drugs as well, and again it was to make sure that the doctor, I suppose, is not giving a drug that's maybe not indicated or something like that, but it's turned out to. I mean, I have, I'm asked for prior authorizations for generic drugs like prednisone. Yeah, so they have really come into-.
Speaker 1:Just very inexpensive.
Speaker 2:Very inexpensive. They really have come into the doctor's office and now, because they own their own pharmacies. Now we knew CVS already had its own pharmacies, but now they all own their own specialty pharmacy and what they do is they make the patients fill all their expensive medicines at the specialty pharmacy. And so I mean, I've heard horror stories and the patients can't go where they want or else they won't pay for it. They use the cost of the drug as a cudgel to force patients into taking the drugs that make them the most money and send them to the pharmacies where they make the most money. Wow, and I've been complaining about this for I don't know, maybe 10 years. My son's an attorney and to get back to exactly what you said, he goes, mom. All three of those companies are publicly traded companies. Their fiduciary responsibility is to their shareholder, not to your patient.
Speaker 1:That's right.
Speaker 2:So I think as a country and I'm a capitalist, free market person we have to decide. Do we want the health decisions made by companies that are mainly concerned with the stock price of their company, because that really is what determines what I can give.
Speaker 1:It's whatever will keep their shareholders happy If I'm not mistaken, I've been told that something over 50, I want to say it's 52% of total medication expenditures globally come out of the United States. And so if they can't make a drug sell well in the United States, they're pretty much not going to invest in it a whole lot to sell it globally either. And I think that it's really fascinating when you look at how important the US is to the. There's a lot I mean all of the global companies sell here, but they have to go through the process of extremely extraordinarily expensive process, you know, to get a medication to market to begin with, and much of that is what compensates them for the research and development, for new medications and so on. And so it is an important sense of linear progression in one sense.
Speaker 1:And yet in another sense, the access issues to the patient, and we see so many people that cannot get to a specialist like you that live in, you know, in our state, like Shreveport for instance, or they have to drive five, six, seven hours.
Speaker 1:They're already.
Speaker 1:The reason why they can't afford that four or $500 at the point of sale is because when they're trying to get their prescription filled is because they got to drive five hours and already spent two or $300 just to get and those things are barriers that actually prohibit people from actually getting the medication to actually solve their problems intrinsically.
Speaker 1:And that disruption exactly what we say this all the time is that these types of decisions and the formulary basis are what is disrupting the sanctity of the patient-doctor relationship. And we have so many laws and we have so many, there's so many restrictions and so many liabilities that you're under under your licensure that actually demand of you to make certain that you are. There's a certain sense of again, sanctity is probably the best word that I know how to demise. There is this idea that you have gone through this very personalized care with your patient, determined what the best course of action is, and you cannot even prescribe the very thing that you know is the right decision for this patient based upon the needs that you've assessed. And it's all because of money has gotten in the way of it.
Speaker 2:Absolutely, it's profit over patients, it's ledgers over lives. I really like that because they look at the ledger and we've recently had some terrible examples of formularies changing, patients not being notified the recent, you know, over the last year or so. You know the young man going to pick up his asthma inhaler and they just either moved it to a higher tier or excluded it from the formulary and now it would cost him $250. He couldn't afford it and he passed away over the next couple of days from the formulary. And now it would cost him $250. He couldn't afford it and he passed away over the next couple days from status asthmaticus. He couldn't get out of the asthma attack. So these decisions are not just minor decisions. They actually have lives that are associated with them and I just look at it as the insurance companies just hope that well, it's collateral damage and it's going to be yesterday's news. Well, I don't forget about it, it's not yesterday's news to me.
Speaker 1:Neither does his parents, neither does his sisters and his brothers and all of his siblings.
Speaker 2:The entire community. We're shocked.
Speaker 2:And this happens more often than you would think, patients getting denied, particularly in the GI space. I've seen a really horrible case where a young man with an inflammatory bowel disease they finally found and he had to be on two biologics and they actually had a peer-to-peer that agreed with them but the insurance company buried it and it wasn't until the parents eventually had to sue the insurance company that their attorneys founded on discovery. So they actually the insurance company actually buried it. You know it's terrible that I've become, you know, so jaundiced when it comes to insurance companies, but you know. But again, as my son said, their fiduciary duty is to their shareholders, not to my patients.
Speaker 1:And so many other types of insurance too.
Speaker 1:I think that this is something that's striking for a lot of folks to understand is that if you had, you know, these financial assistance barriers and there's programs and safety net programs like we offer and others offer, that can help with some of these out-of-pocket expenses, but there have been so many antics that they have actually introduced, like the accumulator adjuster, the maximizer, afps, all of these different types of things that they've done to sort of interrupt or disrupt the ability for patients to access these third-party you know assistance programs.
Speaker 1:One of the things that we found was really terrible I you know had shared with you before that I participated in the United for Charitable Assistance Coalition as the vice chair for many years to try to advocate for third-party assistance preclusions that incurred that came from really a frivolous CMS policy.
Speaker 1:It really wasn't even a mandate, it was just a memo that they sent out that said you don't have to be able to accept anything except for these three institutions, which were government organized institutions, but essentially it prohibited people from even getting some of the third party assistance that they were able to get at the time and literally we saw people living in third world like country sort of conditions that were dependent upon these medications because they were delayed on and on and on.
Speaker 1:We just did the AFP data survey. We found that the average delayed period of time was 68 days for somebody that has a bleeding disorder specifically and I would assume the same would be in rheumatology is that it not only can put people in a, it's not just an inconvenience, it's actually putting them in life-threatening circumstances that at worst it can obviously be early mortality, but at best sometimes it's actually still a permanently disabling, unrecoverable circumstance that can occur because they could not access their medications. And this is all because of the antics, again, that these insurance companies, pbms and all of the system has really made to prohibit high-cost medications from being able to be deliverable.
Speaker 2:I mean what you were talking about with the accumulators for the longest copay cards, anything, whether the patient got it out of their own pocket. They had a rich uncle, they found it on the ground or they had a copay card from the manufacturer. It always counted towards their deductible and, if you think about it, these are patients with chronic illnesses that are on expensive drugs, that often have other comorbidities that require certain procedures, require other medications, and they would count on that deductible being covered by the copay card. Right, and you know.
Speaker 1:Or the rich uncle. Yeah or the rich uncle Right right.
Speaker 2:Well, the PBMs would always complain oh, it's enticing patients to take a more expensive. Let me tell you, my rheumatoid lupus psoriatic patients would love to not have to take an expensive medicine. They would love if it could be covered by something as simple as just some methotrexate every week. So as soon as they found out that that argument wasn't working, I think they sat around and thought well, okay, I guess we're stuck with copay cards. How can we make money on it? Oh, I know, let's not count the copay card towards the patient's deductible. So not only will we get the money from the copay card when the patient runs out of copay card in June and they come to pick up their drug I'm sorry, you owe a thousand dollars for your drug now. Well, wait a minute, my deductible has been covered already with the oh, I'm sorry, no, we don't count it towards your deductible. That all occurred around 2017. They act as though that's how it's always been. No, that's not how it's always been.
Speaker 2:This is something new that's been injected into the drug supply chain I had when I first gave a lecture on this at the American College of Rheumatology. A young man who was at Yale doing his fellowship came up to me afterwards and said I'm really interested in this. It was 2018, 2019. And he said can I email with you to find out more about this? And I said sure. So he says the chief medical director of one of the largest PBMs in the country is coming to Yale to speak to our section on what they're doing. And I said he says is there any questions you want me to ask? And I said yes, ask them if they're going to implement an accumulator in their drug benefits and, if so, why? Well, he wrote me back and he said yes, they are. And the reason why is that those patients. Anytime you start with those patients, you know it's going to go downhill.
Speaker 1:Right.
Speaker 2:They pay so little in premium to have these high deductible plans. Essentially, they don't deserve to have their deductible covered. Now, since when do insurance companies get to decide who deserves what? Insurance companies get to decide who deserves what? Now, I'm sure that didn't go over well, and that's sort of what he wrote me in the email. They use that excuse they don't have enough skin in the game. Well, mr Chief Medical Director, I'd like you to have one of these diseases and tell me if you think you have enough skin in the game. It just, I mean, it chokes me up. I mean that is discrimination at its, at its worst, right, that's so true.
Speaker 1:I want to talk a little bit about, you know, there's there's a lot of you know, in Medicaid, medicare, there's some anti-steering laws. That's already there in place. But we're seeing steering happen every day in some ways, especially on the commercial side, kind of the wild West out there, right, and it's funny because the marketplace plans kind of straddle a fence there a little bit. Is it public policy? Is it private? It depends on if there's a subsidy and there's some policies that are being sort of stretched to be able to bring new definitions to the market. But you have had also the ability to actually testify before some of these committees and subcommittees on, specifically as this sort of PBM curtain and the layers of these things have been sort of. The layers have been pulled back and Congress over the last two or three years has been exploring what is the problem and trying to wrap their arms around it. And everyone we've talked to still is like it's so complex that you know. We've talked about Diane Harshberger, for instance, who kind of ran her old campaign on the idea that they would do this, and of course Buddy Carter in the Senate now, who's been a big champion of these things as well, but there are definitely people who understand the issues and the complications and that change needs to occur.
Speaker 1:I think a lot of the focus has been on this transparency issue and I don't know that transparency alone solves the problems. But again, this hiding that goes on every day to sort of like. These tactics are intentional and we are living in communities today at least for myself with hemophilia, but others in rheumatology as well and other high-cost medication zones are actually being targeted and it is intentional discrimination and an attempt to suppress the use or access to medications in these spaces. But with that and this pulling back of the curtain, it seems to be that there's still such a cloud of mystery and the big three you mentioned earlier obviously want to suppress that. I think that there were some pretty substantial things that came out where they were, you know, caught in contempt even you know of some of the hearings that went on there. But just talk a little bit about your experience in terms of what you've been doing in the policy work that you've been doing and also like your experience in the hearings themselves and kind of what the response has been from that.
Speaker 2:Yeah, so the idea of transparency is great. The problem is the big three, and if we pull out the big three PPMs, it's CVS, caremark, optumrx and Express Scripts. Those are the big three and they handle about 80% to 85% of all prescriptions in the United States. Well, they're not dumb. I think they could see the handwriting on the wall with rebates. A long time ago I became interested in rebates around 20, I don't know, maybe 2012, 13, 14, 15, somewhere in there. And that was the heyday. I mean, it was up until about 2018, 2019, rebates were everything.
Speaker 2:And one of the only times that I actually testified it was the Health Subcommittee of Energy and Commerce, and sitting next to me was one of the representatives from the trade group for PBMs, and at the time, anna Eshoo from California was chair of this particular committee and she said to the woman who represented PBMs Dr Feldman said PBMs choose higher priced drugs on the formulary, oftentimes over lower priced drugs, because they make more money on them. Is that true? And she goes no, we pick the lowest net cost drugs. And I didn't know that I could push the button and say something. So I didn't. And she said but are they higher priced? And she goes well, they're lowest net cost. And I finally just pushed the button and I said but the price is actually higher. And as she finally just looked at her and said, okay, so I don't want to know if they're lower cost, I want to know, are they higher priced? And the woman had to say, yes. Now this is at a time where everybody's screaming about we have a drug pricing crisis in the US, and that statement should have just rocked that committee and said wait a minute, we have companies that pick higher-priced drugs and here we're complaining about higher price. It was like this. It just sort of went over their head.
Speaker 2:Well, by then they realized if we have to start becoming transparent with rebates and have to start, you know, we need to somehow figure out a way that transparency is let's just make a bigger black box. If they can see inside this black box, let's make a bigger black box. So they did did was they started subsidiaries. That would aggravate, aggravate, yes, it aggravates me. Aggregate all of the rebates from various manufacturers, not just one for this one drug, because God forbid anybody finds out that. Oh my God, it's so proprietary.
Speaker 2:And they're rebate aggregators. And sure enough, express Scripts has one in Switzerland, another one has one in Ireland, another one does have one in the US, but it hides it. So their CEOs can sit in front of Congress and say we pass 90 to 95% of all rebates back to the plan sponsor or our clients, but they forget to say we pass back what we. They say what we get meaning, but the rest of it's being hidden offshore. So then so okay, so that transparency, yes, we can see now many states are passing transparency things, but it doesn't tell us really where a lot of the rebates are. So they started then thinking well, okay, we need to get another source of income. So they've reclassified them all as fees. Interestingly enough, the fees are also based on a percent of the list price of the drug.
Speaker 1:Oh, my God.
Speaker 2:Which guarantees an increase, which guarantees if a drug company comes, well, you know they may try to find some transparency on that. So let's figure out another way we can make money. I know let's mandate all of our patients go through our specialty pharmacy and there's like four or five criteria that makes a drug special, but you can use just one of them and that is that it's expensive and because the PBM sets the price that the specialty pharmacy charges, they just make it over $500 a month. It's automatically special and now you have to get it through our specialty pharmacy and the transparency. Finally, there was a little bit of transparency on that and a couple of states found out that their Medicaid system was being taken totally by the PBM that was controlling, and especially pharmacy controlling, medicaid. They would get a drug that, per pill, maybe cost them $12 per pill, turn around and charge the state $250 per pill. And that didn't start becoming transparent until 2021, well, maybe 21, when Cost Plus Drugs, which is the Mark Cuban pharmacy, came out and started showing how much it cost to get this generic drug, one in particular. Their price per month was about 50 bucks per month. The specialty pharmacy was charging anywhere from four to8,000. So they just it's the whack-a-mole story. Transparency is good, but as long as they keep, they kind of anticipate what the next transparency is. So they find another company they've done is they started yet another subsidiary not the rebate aggregators that will go to.
Speaker 2:You know when biosimilars they're supposed to come to the market and make everything cheaper. Okay, what has happened is the PBN will go to one biosimilar manufacturer and say I have a company that will co-produce that drug for you and they each have their own one of those CVS has Cordavis, unitedhealthcare has Nuvela and Cigna Express, grips has Qualent, and they all have picked a biosimilar that they will partner with. And now they make money because they co-produce it. So they're like a little manufacturer. Then they take that drug and prefer that biosimilar on their formulary and oftentimes if there's a high priced and a low priced same biosimilar, they choose the high priced one. It's whack-a-mole. So now they actually manufacture the drug Again judge, jury and executioner. They create the formulary and then prefer the drug that they make money on.
Speaker 2:Back in the 90s manufacturers were owning PBMs Merck, medco, federal Trade Commission came and said you can't make the drug and then make up the list of drugs and only prefer the drug that you make. Well, that's what's happening now and I've written to Federal Trade Commission. They're just inundated now with PBM stuff and they're just trying to get through it, but I think that's something that is truly antitrust, anticompetitive. So now they're not just the health insurance company and the drug company and the specialty pharmacy and the bank and they own the doctors. They're now manufacturing the drugs.
Speaker 1:Oh my gosh.
Speaker 2:So talk about vertical integration.
Speaker 1:It's on steroids, literally. Yeah.
Speaker 2:I mean my saying on some social media. Things are I'll keep doing this as long as my passion stays above. You know ahead of my cynicism doing this as long as my passion stays above you know ahead of my cynicism. But every time something like this happens or I go to Washington DC, my cynicism starts to catch up with passion. But then I hear these patients' stories and my passion jumps up again.
Speaker 1:There's a lot of patients being harmed in the context of this. I think that this is something that we see a lot with the, you know, patient population that we serve, where there's so many people that are getting, you know, mislabeled packaging they're getting, they're not getting, especially with the big three, their mail order in large part. So a lot of times if they need an additional dose or something like that, they're like oh well, ups can deliver it. Well, ups doesn't always deliver to rural areas quickly, number one, and many times the instructions don't always occur the same. So they'll have the instructions say this must be a certain temperature and they have to be delivered, but then they'll sit on the doorstep. Sometimes they have to be signed, they'll take it back to a warehouse. It's not refrigerated, they have to be, and so we see a lot of times these independently owned pharmacies are the ones that oftentimes really understand.
Speaker 1:You know, I think and correct me if I'm wrong, because you know this far better than I do, but I think in the practice of medicine, you know, the last 25 years there's been this huge push for physicians to specialize. I mean we have very few generalists anymore, I mean everybody has a PCP. But generally, though, there's been this big push to specialize in all these different specialties right, and I think, globally, not just in the American system. But we have really said, okay, that's the best way to practice in many ways, because we're learning so much about oncology, we're learning so much about hematology, we're learning so much more in all of these research projects, actually discovering so much more that we couldn't see before. So we should hyper-serve these specific disease states where we do have solutions that can be discovered, and yet simultaneously, in the delivery of those specialty medications, there are organizations, there are companies that have really become specialized in certain ways of administration.
Speaker 1:We've seen it, of course, in the IV space, where there's so many people that still need in-home nursing. There are different seasons of life. It could be a child that's just learning to get infusion at home. It could be at the same time it could be a senior who is having venous axis issues. That needs more help getting you know an IV at home. You also have just preferences in terms of. It may sound like a convenience factor to some people, but the right kind of band-aid. You've got a lot of people that with latex allergies that didn't have that 20 years ago. So these types of things can be actually focused on and understood and intrinsic in the method of the way that they're actually delivered.
Speaker 1:As a provider, the pharmacy is a provider also, and so in that exchange of that expertise, one of the mantras that I keep floating around I haven't had anybody really bite down on it yet, but maybe one day is let specialty pharmacies specialize again, because I think at some level there are organizations that say listen, we're going to be small, we're going to focus on this geography, or we're going to focus on this particular disease state and these set of issues and we're going to hyper-serve that population, make sure that they're served consistently in the way the doctor prescribed, on schedule, and they're compliant and they're educated and all of those things.
Speaker 1:And a lot of times they function in almost a social work capacity too, because they're helping them with financial assistance programs, they're helping untangle the barriers right. They're going to the schools and providing education to the school nurse. They're doing all of these extra things that they don't get compensated for directly, but they're doing all of these extra things that they don't get compensated for directly but they're doing that out of the mechanism. What the big three did was they said no, we're going to make everything a transaction. It's all going to come from one warehouse and all you got to do is just ship on the drug. And that's just not the case with many of these high cost medications. They have to be administered a certain way, in a certain pattern and done always that same way.
Speaker 2:Yeah, I mean, I don't want to that's being disruptive. I don't want to throw a negative blanket over all of them, because there are. Even the big three do good things, sure. The problem is is that they've become so hyper-focused on the profit that the care that you're talking about, particularly that community specialty pharmacies, can give Right and even with less special drugs people really like and they depend on their community pharmacists, their independent pharmacists, to help them. They know them. The people sitting off in Illinois somewhere don't know my patients down in New Orleans.
Speaker 1:Right.
Speaker 2:And what has happened is they've become so hyper-focused on profit that there's the insurance companies where the actual payment of the drug and the procedure and the visit is handled by the employer, the orisa plans the self-insured employers.
Speaker 2:Some of them are huge like UPS Kroger employers, some of them are huge like UPS. We at CSRO, where I'm the vice president of advocacy and government affairs, we started something called a payer issue response team, so rheumatologists from around the country could send us problems they're having with payers. And there was one that was having a problem that they would always buy and bill. They would buy the drug, infuse it in their office and bill the medical side of the health insurance company. Well, as soon as now the medical side was part of the pharmacy side, the specialty pharmacy side. The third-party administrator would tell the employer oh, it would be much cheaper if we could run it through our specialty pharmacy. We would send it to the doctor and they wouldn't buy in bill, they wouldn't owe anything, it would go straight to them. Well, a couple of things happen with that Talk about waste. If the patient, if we change the dose at the last minute, it goes up, nope, they've already sent it from their specialty pharmacy, we can't. So then we can't give it to them, or they're in the hospital, it comes to the doctor's office, we can't give it to them and then we realize they can't take that drug anymore. It's just wasted. So what we did was we had this and it was a patient who had worked at UPS. They came into this new rheumatologist's office and they said they told us that the drug has to be white bagged, meaning Dr, so-and-so you need to get it from CVS's specialty pharmacy and then infuse it. So they did, because it was the first time the patient. They didn't want the patient to have any delay. The next year, we helped the practice write a letter to the specialty pharmacy, or at least the PBM, and said can you grant an exception so the doctor can do buy and bill, so there's no waste? And we got the exception.
Speaker 2:Wow, the next year, which was 2023, we wrote another exception and they said no. We wrote another exception and they said no. So this practice, who had a very good office manager, she went and got the receipt from specialty pharmacy and I'm just going to tell you the name of the drug it was Remicade, okay. And then she had the receipt of what she charged UPS no-transcript From the doctor's office. It was $13,000 for the whole year. The patient paid $500 when it came from specialty pharmacy. They paid $25 when it went through buy-in bill.
Speaker 2:So I wrote a CSRO letter to the entire C-suite of UPS, copied their CFO copied their compliance officer, et cetera. I didn't send it to CVS Caremark, just to them, and they wrote back to the doctor's office and said we are going to look into that. Well, as soon as CVS Caremark heard they were going to look, because this isn't the only patient they're mandating, especially pharmacy, they said, oh okay, no, nevermind, we'll give you an exception. And now there's like a permanent exception. So that's just one example where actually I mean because it's happening in other areas UPS could be sued for a breach of fiduciary duty to the plan. If you continue to mandate white bagging and you're charging $44,000 where your plan would only be paying 13 and your employees paying 500 and they could be paying 25, I mean that could be a breach. And it's all because of profits and that is a result of the vertical integration of the medical side, the pharmacy side and and again the employer will has been pulled over their eyes.
Speaker 1:They have no idea that it was costing that much more Things that I noticed in the hearing that you I think this is the one that you testified in.
Speaker 1:There was quite a bit and I even heard the hearing where the big three were interviewed specifically that I sat in on. There was actually quite a bit of discussion around the fact that they they still use these independent pharmacies and they have a list of 1300 pharmacies or whatever, but that was really later debunked as being like no, this is not only are we not doing that, but we're also directing them to the ones that we have direct contracts with. And is there anything in that area that sort of just sticks out to you as being also kind of part of this? The distinction of them really doing steering is what we're talking about, essentially, but they're getting away with it with ERISA plans and they're getting away with it in commercial spaces where they would not necessarily have probably wouldn't take that same risk, maybe even in the public policy side. But I guess the question is is this something that you're seeing that there's corruption within? Even they're using this idea that they are quote unquote, using all these pharmacies when they're really not.
Speaker 2:Yeah, and if they are using these, all these pharmacies, when they're really not, yeah, and if they are using them, they're probably paying them less than what they would pay their pharmacy.
Speaker 1:Their preferred pharmacy?
Speaker 2:Yes, and which is causing a lot of of the pharmacies to not be able to. You know no, and if, and what they've done is they have these, these sort of criteria for evaluating the pharmacies at the end of the year and if they didn't dot an I or cross a T they can ding them. And it used to be they could just take a bunch of money back at the end of the year. Now they have to kind of tell them ahead of time how much money they're going to take back. So it becomes to the point where the community pharmacies they're actually pulling out because they're losing money. They can't, they can't afford to be in that network Right or in Medicare, where they do have anti-steering. 44% of Medicare beneficiaries do use the pharmacy that's not necessarily mandated, but it's the easiest one for them to use.
Speaker 2:Path of least resistance, they're not going to shop around, and so what has happened over the years is specialty pharmacy has become huge, and one of the bills that you and I were talking about that's probably never going to pass. But you never say never.
Speaker 1:We can only hope, though, it actually was introduced last year.
Speaker 2:It has bicameral meaning both the senate and the house have sponsors and bipartisan yes we've got republicans and democrats behind it, yes, and what it would do is make all the pbms, and consequently their motherships, um divest themselves of all pharmacies. That makes total sense, because the specialty pharmacies also sort of tend to make money on whatever makes their PBM the most money. I actually had someone in the know tell me that their drug was slow, walked through the specialty pharmacy. Specialty pharmacy told the doctor why don't you use this drug? Because we can get it quicker, forgetting to tell them that's because we also make more money on it.
Speaker 2:So, they actually will slow-walk a drug that I've picked through specialty pharmacy, make the patient wait, causing a delay in care which, as in bleeding disorders, can be devastating, and the same is mine, because then they'll have a flare and I have to give them prednisone, and we know what happens when people take steroids. So really, just, they don't mind harming the patient. But part of the issue is, as you recall, back I think it was the Affordable Care Act where it came out and said you have to, of all the premium money you get in, you have to spend 85% of that on patient care. Well, all this other money doesn't have to go into patient care because it's not coming from the premiums. So they can basically totally get around that rule or that law. So 85% of what comes through through the pbms, none of it has to go into patient care.
Speaker 1:85 of what comes through special, none of it has to go through patient care which could make a whole lot of sense as to why they actually separated them out. But wanted them separate not under the same tax id, their separate entity, but they are owned, but they are owned by the same, by the same company, but not all that money that they're making.
Speaker 2:I mean the PBMs. When you think of Optum, they make all the money for your UnitedHealth group, which is then UnitedHealth Care, which then is Optum. Optum owns the doctors. Optumrx is the PBM I mean. When I think OptumRx, it reminds me of yet another story. I had a woman contact me on LinkedIn. She was an employer benefit consultant, one that was not conflicted, one that wasn't in the back pocket of the insurance company. Okay, who knew they?
Speaker 1:have those. Yeah, they have those. Get her number later.
Speaker 2:She said that the employer contacted her because one of his employees had metastatic prostate cancer.
Speaker 1:Okay.
Speaker 2:And the doctor had ordered a drug. The generic of a drug called Zytiga, which is for metastatic prostate cancer, went to the drugstore with the generic order Dabitarone, I think is the name and the drugstore said I'm sorry, your plan only covers and this is he's telling this to the employers paying for it only covers the brand, which is 10,000 a month. And he goes. But my doctor wrote for the Abiturone and they said I'm sorry. So the employer contacted his consultant, who called OptumRx, and recorded the conversation and she sent it to me. She said you can use the story, but don't use my name because I still work with these insurance companies. And the recording.
Speaker 2:The pharmacy tech said oh yes, let me look and see. Oh yes, only the brand, the generic, is excluded. She says so you're excluding a $300 drug and only will fill a $10,000 drug. And the drug tech the pharmacy tech just kind of laughed and said you know we do that with a lot of drugs. And he started naming off the other drugs where they prefer the brand. And she said and he goes, I'm not sure why they do that. And she kind of laughed and said I know why they do it. What if the doctor wants the generic. They said well, the doctor can appeal and ask for the generic, but the patient's going to pay more for the generic than they will for the brand.
Speaker 1:Which was the whole point of generic, the whole point of having it.
Speaker 2:So that's you know, and yet we talk about a drug pricing crisis. We have a formulary construction crisis.
Speaker 1:That's so important to understand.
Speaker 2:Unbelievable so true, wow. Stories like that make my passion go up a little bit higher than my.
Speaker 1:I mean it makes my cynicism go up, but the fact that there's somebody out there that's actually Somebody that represents that.
Speaker 2:And that that kind of thing is happening and the employer had no idea.
Speaker 1:Right, we don't have time to get into the.
Speaker 1:AFP issue. But this is the same kind of stuff we're hearing on the AFP side too the alternative funding programs where they're using ERISA law to basically essentially sort of say that you don't have to support any specialty medications. And then, of course, under ACA law, the essential health benefit really became an issue where they said, well, in order to do that, we'll go get the free drug from the drug manufacturer program and we'll satisfy the EHB manufacturer program and will satisfy the EHB. But by doing that they end up going into massive delays. And the free drug programs, by the way, were only meant for a very temporary solution when they started, when we had lifetime caps and pre-existing conditions, and many of those programs have reduced down to nothing and are now filtering for these AFPs, causing huge delays. We're seeing upwards of 68-day delays in terms of people getting, and 22 percent of people in the study that we did last year didn't even get their medication period. So this thing just continues to build.
Speaker 1:I mean, you said earlier the game of whack-a-mole. It's like the minute that you think that you're solving one issue, they come up with some other antics and it's really shocking and I do think that one of the things that has made America so distinctly different from so many other countries around the world is that, you know, is really the strength of our laws and the enforcement of the strength of those laws. I mean, you hear that from global leadership around the world and it's shocking to me still that in this capitalistic environment that there's always this ever-changing sort of manipulation of tactics to try to intentionally persuade people to really work this. I'm constantly shocked and I'm sure, again, this is something you know far better than I do, but how many. I'm very frustrated with the fact that the practice of medicine as a whole, in terms of diagnosis as well as prescribing, has really been controlled by a couple of guys at the top of the chain. They're MBAs, they don't even have a physician. Most of the people who are controlling hospital networks and all of these decision-making that are even allowed to how many patients they have to see every day and all of the system of the machine has really been really pushed and enforced and actually driven to a lower level of care for most people and really made the practice of being a physician miserable in conjunction with every other part of the health system. But it's all been really decided by a bunch of people who are just MBAs. They're people that have accounting backgrounds and they're not even in medicine to begin with, so they don't come from this perspective of this.
Speaker 1:And we have all these rules and laws about all these things to try to help protect the sanctity of the doctor-patient relationship, and yet that's being disrupted every single day because it is really driven by the almighty dollar, and I think the only way to push back on that is to elevate these real living stories. That's why I'm a huge advocate. I'm constantly trying to get our people to get involved and engaged and to speak up. And yet there's been many rare disease groups and many patient advocacy groups that have had large numbers of people go to the Hill and try to advocate for these things.
Speaker 1:But unless we speak up, there is no army out there that is coming to rescue us. It's going to be us to speak up or no one will, and that's why I'm so grateful for advocates like you that have just said you know what. You understand all of the moving parts, you understand all of the transparency. It's so hard to see behind that curtain, but you're still out there defending the rights of people every day, because really, where the matter is, which is really the name of the bill that you really helped to introduce with you know, jake Osh andkloss as well as Senator Warren about what is it people over.
Speaker 2:People before monopolies. So you have Harsh, barker and Ochenkloss in the House and Warren and Hawley in the Senate, by Camerrill. I don't know if it'll ever, but the one thing that you said is that we do pass some really good laws, whether it's accumulator bans, et cetera. They need teeth, yes, because what happens is the insurance company oh, it's an infraction, oh, that'll be $10,000. It's like a mosquito bite.
Speaker 1:Right.
Speaker 2:And it's the same thing with hospital transparency. They don't want to do it either. That's right. So what you do is you make it so that, okay, I'm sorry, you can't participate in Medicare anymore, your hospital can't participate in Medicare because you're not transparent.
Speaker 2:I'm sorry, UnitedHealthcare, your specialty pharmacy, can't participate in Medicare anymore because you can't have a Medicare Advantage plan anymore, because you're not following the laws. The amount of money that goes into their pocketbooks, you can't find them enough. I mean $400 million here, $400 million there, when your profit every quarter is $5 billion. So if we do get the laws passed which is not always easy to do because of money, there has to be teeth.
Speaker 1:There has to be enforcement. That is so true and so unfortunate that I do believe over the last five to 10 years we really have seen a lacking in enforcement, especially in health care. You're right about if you took Medicare and Medicaid away from them, they would instantly change their story.
Speaker 2:It's the same thing with 340B Manufacturers. If you don't participate in 340B, you don't participate in Medicare or Medicaid.
Speaker 1:That's right, so it's good for the goose.
Speaker 2:It's good for the gander.
Speaker 1:Yes, that is so true. How can we get that into?
Speaker 2:law, yeah, yeah, okay.
Speaker 1:Well, when I find the magic wand box I'm going to give you one and then you're just going to pass it around.
Speaker 1:But I think that there's so much that that it takes clarity to speak truth to power and I think so often in advocacy what's missing is if you just go into these conversations with legislators and you basically tell them the sob story and look, the sob story we said earlier, it's the humanity in it is what actually does, I think, move the needle oftentimes. So I'm not saying that that's not important, but I'm saying that if we don't have the, we need the humanity, but we need it delivered with clarity about the issues that really can move things into an organization way that actually makes sense for everyone and puts the things that were intended to be in the right perspective and priority levels. And unfortunately, again, the money seems to be the almighty dollar. People cower down to that so often in every element of this whole healthcare system. But we've got to continue to elevate the patient journey, the patient story, the provider story, the provider challenges, or else this thing is just going to get so bad that the train will derail off the tracks and it'll be almost impossible to put it back on, and I think that we can't possibly say we have the greatest country in the world if we don't have the greatest healthcare system in the world and we are far from it. Our healthcare system as a whole is really suffering and needs a lot of work, and it's going to take clear voices like yours and hopefully many of the people listening today will help to get inspired to get activated.
Speaker 1:I certainly hope the bill gets reintroduced, as you did so much work to bring it to fruition the first time in the 118th, but I do believe that there's potential for more to be done here in the 119th, but, like you said, it's got to be. I'm personally hopeful. I'd like to know your thoughts on this, but I'm personally hopeful that all the hearings and all of the work and investigation that was done by so many committees and subcommittees and individual legislators over the last two years, I'm hopeful that that's not going to go by the wayside and that work will continue on. Even though nothing was really collectively decided, I still think we have the potential to really make some decisions, especially in terms of PBM reform. And do you?
Speaker 2:feel the same way I do, I think, because some of the PBM reform actually saves the government money.
Speaker 2:So it can be used for, you know, in a reconciliation bill or something like that, to, to, to, to offset the cost of something else. So there's, there's hope, and it's weird that it has to be done that way. It's unfortunate to understand it. It's not as complex as people think, but it can't be explained in a soundbite and unfortunately, everybody wants the whole answer in a soundbite and unfortunately, everybody wants the whole answer in a soundbite, even in an elevator kind of pitch. And it takes a little bit more than that, not a lot more, but a little bit more than that. And we all live from soundbite to soundbite.
Speaker 1:It's true and my grandfather used to reuse the quote over and over which I love was that the path of least resistance makes both men and rivers crooked, and so often I think it's really the path of least resistance that so many people are looking for, and that's true in the soundbite, that's true in some of these things.
Speaker 1:We just want the sample size.
Speaker 1:Just give me the small thing that has gotten so complicated in order to manipulate in the favor of profits that it's actually left the people and the humanity behind the purpose of the administration of medications that save lives.
Speaker 1:It's left it behind and in the dust and actually failing in many ways, not because we don't have the science, not because we don't have the way to be able to distribute it, not because we don't have a mechanism to even pay for it, but it's because of the lust and the hunger for the monetary gain from a few entities that has actually really stripped the power of the benefits of all the work of the science and the dedication of so many thousands of researchers and people through the generations.
Speaker 1:Really, in so many ways, it's a step backwards, it's not a step forward and we've got to change that and it's only going to take people that have the clarity of thought like you have and the passion that you have and the dedication that hopefully we collectively as a community have to be able to really put the pressure on these things. I do think oftentimes the lobbying groups have so much money and so much influence because the messaging right they can get the sound bite they can do. The thing that makes it sound like their story is so much more important than everyone else's. But we cannot cower down to the power of big business at the sacrifice of our most vulnerable people in our population and unfortunately that is what has occurred over the last 20 years.
Speaker 1:We've got to change that.
Speaker 2:Yeah, I totally agree and I have to say thank you for everything that your organization does. It makes a difference in the lives of people that have either been helped or not helped so much.
Speaker 1:Wow. Well, I appreciate that it comes from a place of experience and also a place of genuine love for our communities, and I really think that it's just like where we started off right. It's like your experience walking through that with your mom is really what still drives you today, and my experience walking through it with my family is what drives me today, and I know that there's a ton of people that will listen to this that will hopefully feel inspired I believe they will and we really hope to hear feedback from this as well. But thank you so much for all that you've done and continue to do to be a force to be reckoned with in this space, because we need you more than ever in a time like this.
Speaker 2:So thank you. Well, my passion is ahead of my cynicism, just sitting here talking with you. So, thank you. It's a pleasure.
Speaker 1:It's wonderful. Well, thank you so much for taking time out to listen to this podcast. I hope this has been helpful for you, I hope it's inspired you and, more importantly, we really want to hear from you. So make certain that you leave a note in the comments, so let us know where you're listening to this from, or maybe where you've heard this from, but also make sure that you subscribe.
Speaker 1:We will be having more sessions like this, more conversations like this, to do a deep dive into really what's important to all of us, into making important change and honest and open conversations in healthcare. And one of the things we would love to also challenge you to do is email us if you've experienced any kind of pain or disruption in your care, specifically in this area of PBM reform or in pharmacy disruption to getting the medications that you need, including financial assistance aid programs. You can email us at info at hope-charitiesorg, and we would love to hear your specific story and understand how we can hopefully serve you, if not immediately through our resources and assistance programs, but we may also be able to help to utilize those stories to be able to help influence change in the bigger picture of advocacy and policy work. So thank you so much for listening to this. We hope to see you in the next one and we'll take care. Bye now.
