Oct. 30, 2023

Legal Win For Patients

Legal Win For Patients

This week we talk about a major victory for patients regarding Copay Assistance Programs. We’re joined by one of the major players in the lawsuit that made it happen, George Huntley, the CEO of the Diabetes Leadership Council and the Diabetes...

This week we talk about a major victory for patients regarding Copay Assistance Programs. We’re joined by one of the major players in the lawsuit that made it happen, George Huntley, the CEO of the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition. He helps us break down why this was such a significant win for patients. 

We also discuss the new Patients Rising working paper all about current formulary practices and how they’re hurting patients.. 


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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.



George Huntley  0:03  
We joined with the HIV Hepatitis Policy Institute to sue the federal government, Department of Health and Human Services over a rule that they had that they put out in 2021 that allowed insurance companies to create these copay accumulator programs. These programs effectively steal the value of a manufacturer's Patient Assistance away from the patient by not giving the patient credit for the assistance that they're providing. 

Terry Wilcox  0:30  
This week on a Patients Rising Podcast, a major victory for patients in court. We speak with one of the major players in the lawsuit that made it happen. Welcome to the Patients Rising Podcast, I'm your host, Terry Wilcox, CEO of Patients Rising. I'm joined by my co-host, who took a break from his post as chief leaf peeper for the Fall Foliage Society to join us here, he's Bob Goldberg, co-founder of the Center for Medicine in the Public Interest.

Bob Goldberg  1:01  
All right, who wrote that? Do you know how sick that sounds? It sounds like I should be, you know, under house arrest instead of chief leaf peeper, oh my god. Boy, well, let's tie it all together. You know, since the Yankees are not in the postseason, you know I have turned to watching leaves turn color, it's a great joy of mine and allows me to be "leafed" alone. That's terrible.

Terry Wilcox  1:36  
That's a terrible pun, but we're good at that.

Bob Goldberg  1:40  
I'm very good at that. But I'm even better talking to you Terry about stories that matter to patients. 

Terry Wilcox  1:47  
Then you're in luck, Bob, because today we have one that absolutely matters to our patients. And for once the little guys, we the patients, took home a big victory. George Huntley is the CEO of the Diabetes Leadership Council, and the Diabetes Patient Advocacy Coalition. As you heard at the top of the show, the Diabetes Patient Advocacy Coalition, along with the HIV Hepatitis Policy Institute, sued the federal government over copay accumulator programs. 

Bob Goldberg  2:15  
That's right, Terry. So they said under the Affordable Care Act, a patient must must get credit for payments made by or on behalf of the patient. So what's the good news? Well, the great news is we won. Very excited, very excited, the judge agreed with us in our interpretation of the ACA, that payments made by or on behalf of patient need to be credited to the patient. So effectively, the court vacated that 2021 rule that we were fighting, and that meant that the guidance now reverts back to what was in place in 2020. Prior to when that rule went in place. In 2020 copay accumulator programs could exist, but they were only allowed if the drug involved had a lower cost generic available. And they don't want manufacturer assistance driving patients to a higher price drug. Now that sounds all well and good, but over 96% of the manufacturer assistant programs are for drugs that don't have a generic equivalent. So effectively, this was a major win. That was a false flag argument on the other side's perspective. So here's George, explaining in greater detail why this is such a significant victory, Terry. 

George Huntley  3:36  
Obviously, patients who need high priced drugs very often have to turn to these programs to help afford the medication. More than half the country are in high deductible health plans today. And the overall average deductible for all plans has risen 90% since 2015. So the nut that the patient has to cover keeps getting higher and higher and people can't afford the treatments that they need. It's bad enough to get the diagnosis but to lose your life savings or have to decide between food, rent, or medicine. That's a choice no one should actually ever have to make. But it's happening every day in America, unfortunately.

Bob Goldberg  4:12  
That's definitely a choice no one should have to make. But as George explains, people have to constantly make it. 

George Huntley  4:21  
The health plan that they've paid a premium to be part of offered no help to the patient to get the drug price down. And in most cases, the plan isn't even passing on discounts or rebates it gets ultimately on a drug to a patient, which we can talk about later. But you know, they should get credit for buying the drug at the price the plan was charging them. How they paid for it is not the plans business. The plan was charging them this high price, that's what the patient's deductible credit and out of pocket credit should be in with this win, that's what it's for.

Terry Wilcox  4:57  
This is really a great win and it's been years. Patient advocates have been fighting this for years now. And I remember when it first started to percolate and now to be here, it's really great. 

Bob Goldberg  5:08  
Yeah. Well, Terry, you a lot of credit obviously goes to George's organization, but also Patients Rising, you know, has been on the case for years and kept it very visible. So, I just want to recap, you know, why the work that you did, and what George did is so important. 

Terry Wilcox  5:28  
Let's not forget Carl Schmid, either. 

Bob Goldberg  5:30  
Oh, yes, I'm sorry. Yeah, I mean, there's so many others. 

Terry Wilcox  5:33  
I mean, many, there's the All Copays Count Coalition. There's many advocacy organizations have really banded together on this issue. 

Bob Goldberg  5:40  
Yeah, so there's two things, you know, first of all, these accumulators were, if not illegal, and they are illegal, they were awful. They basically, double dipped off of the patient's suffering, first by extracting a huge rebate off of the need to dispense the drug. And then secondly, taking the money that was supposed to be used to make these drugs affordable, and putting in their own pockets. So, doesn't matter how it's paid. It doesn't for the plan to decide. It's not their right. And finally, we have a court decision, which says, these programs shouldn't even exist. 

George Huntley  6:20  
Fundamentally, these programs are pure evil. They take money away from patients struggling to afford their medications, the most vulnerable of our population. These programs have grown to the point where over 80% of commercial plans have them. So it's affecting so many people I just mentioned how many Americans are in high deductible health plans, it's a lot of people, a lot of vulnerable people. So an insurance company can make more money. You know, they're taking this away from vulnerable Americans, so insurance companies can make more money just makes you mad as a patient and a patient advocate. And again, it was so important to fight.

Terry Wilcox  7:00  
And as always, anytime, anytime we're talking about shady practices, PBMs do seem to come up. So here's George.

George Huntley  7:09  
There's a long list of things that need to happen to curtail and manage the role of the pharmacy benefit manager, you know. High and tip number one on my list is rebates. Rebates should be automatically passed through to patients during their deductible period, the average rebate on a branded drug is 48%. So if you're not passing through the rebate to the patient, the patient's literally paying double what the insurance plan is paying for that same drug, you go to the doctor, you get the benefit of the negotiated rate and fee with that doctor's office or that hospital. But in the drugs, you're not getting that.

Terry Wilcox  7:47  
One of the things that George talks about here quite a bit, and one of the things that we know is that change for these types of things is driven by patient advocates. It's driven by patients willing to share their stories. That's why one of the major things that we focus on it Patients Rising, is arming patients with knowledge. Not saying this is how you have to think, but giving them the tools to think. Giving them the tools to see what's happening, and make a determination on what they want to fight for. 

Bob Goldberg  8:21  
Yeah, and I think it's it's again worth restating that this is enabling patients to connect the dots to realize that what is happening to them, A: is happening to thousands, if not millions of other people, and that secondly, that these experiences together can be used to build a case for real change. 

Terry Wilcox  8:45  
Absolutely. And look, there needs to be changed Bob across, you know, the health care delivery system. We talk about this all the time. It's why we focus as an organization on broad healthcare transformation, as we're looking at access, affordability and transparency, and I can't take anyone or any article seriously, that tries to tell me in some sort of opinion piece or whatever, that PBMs have a role and they're saving patients money. Every time I read articles like that, and I want to laugh. Not only has it happened to me personally, where no, no, no, they're not saving patients money, they're saving themselves money. George says and I think he's right, this is a monumental victory for patients. 

George Huntley  9:29  
You know, I'll take the win. It was a pretty much a complete win from our perspective. We wanted them to, you know, vacate that ruling. And that's what they've done they didn't go so far as to say all copay accumulators are illegal. That would have been nice, but it's not that I'm we're gonna go back and try another round of this. I think we got the victory that we wanted out of this. And so I'm going to I'm going to be satisfied with that. I think we helped thousands if not millions of people.

Bob Goldberg  9:58  
This sort of reminds me of the Star Wars trilogy, the three first great parts of the trilogy, that we know that there's a temporary victory, an important one, a win on the accumulator side. But now, the dark side.

Terry Wilcox  10:16  
The Empire is going to strike.

Bob Goldberg  10:18  
The Emperor is gonna strike back. And, you know, that's what the maximizes are, you know, it's the Deathstar of PBMs.

Terry Wilcox  10:27  
Well, then you look and we can go on the maximizers and the lasering.

Bob Goldberg  10:34  
So, George explains what a maximizer is, and you're going to want to pay attention to this, because they're going to become more prevalent. 

George Huntley  10:43  
It's very similar, and it's similarly evil. So a maximizer program is designed to maximize the copay assistance that a manufacturer will provide. So the first thing they do in an insurance plan with a maximizer is they established the patient's copay for whatever the drug is to be equal to the annual maximum assistance the manufacturer will provide. So they take the annual max divided by 12, and that's your monthly copay. And in most of these cases, you're still not getting any credit for that copay assistance. So because you're not getting credit for that copay assistance, we believe that this ruling that just happened will actually impact maximizer programs.

Terry Wilcox  11:33  
Wow, I really hope so. 

Bob Goldberg  11:35  
Yeah, me too. 

Terry Wilcox  11:36  
Well, I mean, that would be really great. I always feel like there's like the squirly you know, the whole practice is so squirly PBMs. 

This is where their cash is generated.

It's a cash cow. Anybody can look at financial sheets of the rise in their profit centers, especially with the mergers and see where they're making all their money. And they're making it on the backs of patients. So what is your understanding and thoughts on maximizers, Bob? Do you think they'll get more prevalent? 

Bob Goldberg  12:08  
Well, I'm sure they're gonna try. But again, I think that, as George alluded to, this is a very important legal precedent. Because if basically, copay accumulators are reincarnated in a different form, but they're performing the same function, that's gonna be really hard for them to defend in a court case. So, I'm sure they're always coming up with other things, of course, then now repositioning themselves as group purchasing organizations, right, Terry? 

Terry Wilcox  12:37  
We've talked a lot about that. 

Bob Goldberg  12:39  
Yeah. So, there's this huge amount of profit that they're getting from these rebates, they're not going to want to give it up. So they will never sleep, and neither will we. 

Terry Wilcox  12:53  
The thing is, is they're constantly sort of changing the algorithm, right? Now, let's be clear, these assistance programs really came about because of the rise in out of pocket costs for patients, and not just out of pocket costs, but the size of their deductibles, I guess I should say, this really came about because of the size of their deductibles growing. You know, like I said, we've had many conversations $8100 a year is a really high deductible for a single woman, you know, for anybody, you know, for anybody for a family of four, that's a really high deductible to meet. For some people, you divide that up, and that's a good chunk of a mortgage payment.

Bob Goldberg  13:36  
Let's put a number on this, so people understand that when you throw in copay assistance, discounts, 340 B, which is another way patients are being taken advantage of, the total amount that pharma companies are doling out, that could go into the form of lower prices, and zero out of pocket costs is about $250 billion a year. 

Terry Wilcox  14:04  
Which is just an insane number, and you hear that number, and then you see the shenanigans go on, and you wonder why people just want to fight for transparency, and who needs these guys in the middle of negotiating? Who cares? They're not negotiating lower costs for patients, they might be negotiating lower costs for themselves. They might be saving plans money. But they're not saving the end user money, which is obviously who we're we're looking at which is patients. They're not saving the money. 

Bob Goldberg  14:31  
Right. So on behalf of everybody, you know, thank you to George for coming on the Patient's Rising Podcast and for fighting for patients. He like so many others is a terrific ally, and we're very lucky to have him on our side. So for more information on George, the case, and his organization, you can use the link in the show notes.

Terry Wilcox  14:59  
This episode of the patients rising podcast is brought to you by the Patient Helpline. Do you have questions about medical transportation or health insurance? What about caregiving? The patient's rising helpline is a free service here to answer all of those questions and more, call or email us and one of our trusted navigators will be there to help. These navigators who handled countless issues for patients and caregivers just like you. If you or someone you know has a healthcare question, challenge or issue, we are standing by and ready to help. To get in touch, leave us a voicemail or send us an email using the link in the show notes.

Bob Goldberg  15:38  
So before we go, today, we would like to talk about the report that Patient's Rising just released. 

Terry Wilcox  15:45  
It is all about formulary practices and how currently, surprise, surprise, they're working against the patient. It's a deep dive into lasering, flawed tiering, and other issues with the current formulary pricing system. This is huge. And one of the things that we talk about all the time. It's formulary benefit design formulary, to me is a part of benefit design. But there are so many discriminatory formulary and benefit design practices out there. What we just talked about for this entire show is one of them, copay accumulators, copay maximizers, it's all tactics that insurers and PBMs use to basically take more money out of the pockets of patients. That's what it is. I can't explain it any other way, because it doesn't ever work, that they're actually doing it to lower patient costs. 

Bob Goldberg  16:38  
Why pay the premiums, right? If you're not gonna get something out of it. 

Terry Wilcox  16:43  
And then there's lasering plans. And these are plans. This is a really evil thing, we can talk about this more on another show, but I'll just give a brief overview of some patients, especially if you're on a high cost, biologic or medication, you may have experienced this, you get this brochure from your employer about your health plan, it basically says, we're not going to cover this drug on our plan. But you can go over here, and they'll work with you to get it. It's one of the reasons why we're pushing for the passing of the PBM Reform Act, PBM Transparency Act, and other similar bills because the PBM role in the supply chain needs to be brought under control and it needs to be more transparent. So for everyone, we'll have a link to our formulary report in the show notes. 

Bob Goldberg  17:33  
And that's all for today, although that was a lot, and we'll have another episode right here next Monday. So make sure to follow the Patients Rising Podcast on your favorite podcast player, so you can be notified as soon as a new episode is live. Until next week for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox, stay healthy.

Transcribed by https://otter.ai