Can Mark Cuban Deliver Cheaper RX?

1 (6s):
In January, billionaire investor, Mark Cuban, launched a low-cost online drug company.

2 (12s):
A new, online pharmacy, costsplusdrugs.com promises to offer lifesaving prescriptions at a fraction of the retail price.

Terry Wilcox (20s):
Mark Cuban's entry into the pharmacy industry has made waves. Today, what makes this Shark's approach to prescription drug delivery different and how it's offering transparency and lower costs for patients. That's up next. Welcome to The Patients Rising Podcast. I'm Terry Wilcox, Executive Director of Patients Rising. We're a group that advocates on behalf of the one-hundred and 33 million Americans who live with a chronic illness. I'm here with my cohost, Dr. Bob Goldberg, he's Co-Founder of The Center for Medicine in the Public Interest.

Dr. Bob Goldberg (53s):
Hey, Terry. As always, we're here on the podcast to analyze and respond to the latest healthcare policy news from Washington DC. This includes legislation that will shape healthcare access and affordability for millions of Americans with chronic conditions. Beyond that, we're always on the lookout for the latest healthcare trends and innovations that patients should know about.

Terry Wilcox (1m 17s):
Exactly, and that's why we're discussing what Mark Cuban's entry into the pharmacy industry means for patients. Fed-up with high costs for patients, Cuban and his Co-Founder, Dr. Alex Oshmyansky, launched The Mark Cuban Cost Plus Drug Company. The company currently sells several generic drugs directly to patients at a fraction of the cost for typical copays. You don't need to go through your insurance to access them.

Dr. Bob Goldberg (1m 45s):
We've been talking a lot on the show about the middleman of the drug supply-chain, our friendly pharmacy benefit managers, and Mark Cuban's model, cuts them out of the equation completely. So, it's more transparent and overall much cheaper for patients. In fact, in some cases, they're probably better-off buying directly from Mark's pharmacy, than doing it through your health plan.

Terry Wilcox (2m 11s):
Plus, we're in the month of May, which is a lovely, rainy month, and it's also ALS Awareness Month. In recognition, Field Correspondent, Kate Pecora, brings us her conversation with advocate, Julia. Julia's boyfriend passed away due to ALS, and she has an incredibly moving story about his battle with the disease. All of that, and more, is up shortly, but first this week's Healthcare News headlines.

Robert Johnson (2m 39s):
In your Health News, another virus to deal with. This one is called monkey pox and it's turning up in North America. There's a reported case in Massachusetts and possibly one in New York City. Several cases have been identified in Canada. Public health officials say the disease is similar to smallpox. The CDC now recommends a COVID-19 booster for kids ages five to eleven. The agency's advisory panel of experts, voted this week, to support the recommendation. The number of kids suffering from mystery hepatitis infections is nearing 200. Many of the cases are not new, but have been discovered through contacts with providers across the country.

Robert Johnson (3m 18s):
Five children have died while others have needed liver transplants. Finally, a new study says, kids in daycare are not getting enough exercise. Authors of the article, published in Pediatrics, say part of the problem is that daycare staffers are not joining kids when they go outdoors. That's your Health News update for this week, I'm Robert Johnson.

Terry Wilcox (3m 46s):
First, in our news today, the infant formula supply shortage continues to rock the country, as shelves have been completely bare at stores. We're covering this today, because it is also a concern for children, and adults, who have rare medical conditions and rely on specialty formulas. The Abbott Nutrition Plant, which is thankfully set to resume production soon, also produces specialty formulas used by those with rare conditions and gastrointestinal disorders. It feels like Groundhog Day, because back in 2020, we saw the supply-chain meltdown, which fueled panic-buying and led to shortages across the country. This is even more worrying since this is truly a matter of life and death for those who can't get access to these formulas.

Terry Wilcox (4m 32s):
In the office where my husband works, there's one baby that was just born. One of his coworkers just had a baby and the other one is about to have a baby in July. We've been combing the internet. We've actually been part of the "Let's buy up the baby formula to help our friends."

Dr. Bob Goldberg (4m 50s):
Well, you know, I have friends who are getting their baby formula from Israel. It used to be that, when you went to Israel, people would ask you to bring toilet paper, because the toilet paper in Israel is more than paper-thin. Now, people are running operations to bring baby formula into the United States from Israel.

Terry Wilcox (5m 13s):
That's great. So, Bob, how did this happen? How did we get to a place where, you read the article in Politico, there are people who really need this to survive and it's not just babies.

Dr. Bob Goldberg (5m 26s):
Well, look, there's a couple of things and I would refer everybody, and maybe we can put it in the show notes, to my colleague and regular podcast guest, Peter Pitts, who was at the FDA a few years ago. He explains why it took so long. There are two things. First of all, why is it taking so long? A large part of that is you have to go through all these procedures. You have to go through what needed remediation and you have to develop a plan. It's a few more weeks and then there's a plan to address the safety and quality issues. The thing is, they should have been alerting and planning well in advance. They knew about it in February.

Dr. Bob Goldberg (6m 7s):
If you would educate a parent, that this is the problem, much of the shortage may not have been averted, but people would have been ready for it and prepared for it. Both the FDA and the Biden Administration failed to do that. In terms of why we got to the shortage, the root cause, it's pretty simple. Most of the baby formula is subsidized and purchased by the government through state agencies. State agencies set the price. They give guaranteed products to companies. The larger companies were able to compete, and they consolidated to even larger companies, so, we wound-up with four manufacturers of baby formula. Add to that, the fact that the requirements for complying with FDA regulations begins to climb.

Dr. Bob Goldberg (6m 56s):
There's no incentive for other baby formula manufacturers to get into the marketplace. You have price controls, you have government-controlled markets. We had shortages of generic drugs, a couple of years ago, and those are the underlying circumstances that will drive this every time. That said, as Peter indicated, we should have let people know back in February. This is the second time this has happened with this Administration, and again, it's not a partisan issue, because we blasted the Trump Administration during COVID. They weren't ready for the spike in COVID in January. I mean, these are the things the government is supposed to do, Terry, and it's extremely frustrating and in some cases, it's life-threatening too.

Terry Wilcox (7m 41s):
Well, it is frustrating. You just don't really think, that in the United States of America, you're going to have a baby formula shortage.

Dr. Bob Goldberg (7m 51s):
Right. Exactly!

Terry Wilcox (7m 51s):
It's just, it's unfathomable to even hear about it. It's one thing to have a panic and becoming the Nether-lands for toilet paper, but to actually be baby formula, was really unnerving. I understand why parents got suddenly - Even though one of our friend's baby isn't due until July, you just don't know when it's going to end. You know what I mean? It's like, I got to make sure I have enough baby formula for when the baby comes. I'm glad that it's getting worked-out. It's unnerving that it happened for many. So, you're saying it's really not just the Administration or just the FDA? They kind of jointly failed the American people.

Dr. Bob Goldberg (8m 33s):
Yeah, this was something that we didn't know the underlying reasons and this is going to happen again. It could happen again. When you only have four manufacturers, and you can't import it from other sources, you're going to have the problem with shortages. That needs to be addressed just like the whole vaccine shortage was addressed.

Terry Wilcox (8m 51s):
Well, I think you hit the nail-on-the-head when you said it stems from the fact that the government is setting the prices, because the government is the number one purchaser of baby formula, which I actually didn't know. I thought it was the millions of parents in this country. So I learned something new.

Dr. Bob Goldberg (9m 8s):
No, the government is the largest purchaser and through the Women, Infants and Children Program you get...

Terry Wilcox (9m 13s):
That actually makes sense. That actually makes sense when I think about it. So now, let's switch gears to the focus of today's show. Just what the heck is Mark Cuban doing in the pharmacy space? A little background on Mark Cuban first, for those who aren't familiar with him. He's a billionaire entrepreneur. Owner of the Dallas Mavericks.

Dr. Bob Goldberg (9m 35s):
Which beat the Phoenix Suns in an upset.

Terry Wilcox (9m 37s):
Yes, I knew that. I paused there so you could put that in.

Dr. Bob Goldberg (9m 41s):
Thank you.

Terry Wilcox (9m 41s):
And an investor in a show I'm sure many of you've heard of, the ABC show, Shark Tank. Now he can add pharmaceutical investor to his ever-growing resume. This is really interesting, Bob, because yes, the company has a markup of 15%, but patients are still getting these generic drugs for a tiny fraction of what their copay would be. He explained how this model works on CBS News, take a listen.

Mark Cuban (10m 8s):
We discussed putting together a pharmacy, specifically for generic drugs, where we go out and we buy them from the same manufacturers that others are buying from, but really keep our costs low and just sell it at a 15% markup. From that, costplusdrugs.com was born.

Terry Wilcox (10m 26s):
It's such a simple model and anyone can understand it, right? I mean, I think that's what people want. It's why, for some people, direct primary care works. If people just want to be able to understand where their money is going.

Dr. Bob Goldberg (10m 41s):
Exactly and know that there's no gimmicks behind it and it's that transparency, that is part of the sell that he's offering. You know what's funny, Terry, is we've spent centuries, on this podcast, trying to explain the distribution system and the pricing system of PBMs and 340B's. Along comes Mark Cuban and goes, "Oh, I'll tell you what we'll do. We're going to buy the drugs at rock-bottom prices. We're going to mark them up 15% and we're going to make them affordable to you." It's like simple. You needed the capital that he has to do it, but I think that we need more of that across the healthcare value chain.

Terry Wilcox (11m 27s):
Well, we definitely do. I mean, cutting out the middleman, the PBMs, it's not even just cutting them out. Katie Cilento and I have talked a bit about this, and I've had some other conversations. It's not just blowing up the whole system and saying, okay, no more PBMs ever, though you and I would probably be for that. Cheering in the corner, but it's making it transparent. When you say things to an American consumer, the American public, it's like, "Oh, those contracts are under lock-and-key. I'm sorry, nobody can see this contract." It's like what? You're telling me to pay, based on a price no one can see, no one can know, and no one can access.

Dr. Bob Goldberg (12m 5s):
Trust us!

Terry Wilcox (12m 5s):
Trust us! I mean, none of us would buy a car that way, or anything else - A cell phone plan, even a loaf of bread! I would not walk into a store and look at the bread aisle with no prices and just pick one! I mean, it's less scary for bread obviously, but you just wouldn't do it.

Dr. Bob Goldberg (12m 24s):
You wouldn't do it.

Terry Wilcox (12m 26s):
Also, one of our friends, Dr. Feldman, in a Healio article, points out the big key differences between Mark Cuban's company and the PBMs, which is, there's no rebates or hidden fees. She's very prominent in the space, on the railing against the PBMs. I think she's got one of the loudest drumbeats and voices out there. Even though she's skeptical, because obviously she works in rheumatology, which is a huge specialty pharmacy space and obviously, Cost Plus Drug Company, that Mark Cuban has founded is not, at least at this time, doing anything with specialty medications, and that's where a lot of the games are played - In the specialty medication market.

Terry Wilcox (13m 9s):
She's skeptical as to how much of an impact it will have, but she supports the overall concept of the transparency of the whole thing. She basically says, what you and I both know, is that 80% of the market is controlled by the three major PBMs. If patients go to the Cost Plus website, and they're able to get their generic drug at a lower cost than they're getting for their copay - I actually looked-up one of my husband's drugs and it was actually cheaper on the Cost Plus website, by not too much, but it was cheaper than he would have to pay in his plan for his generic medication.

Dr. Bob Goldberg (13m 48s):
He's introducing competition.

Terry Wilcox (13m 49s):
Right.

Dr. Bob Goldberg (13m 49s):
Also, it will allow people...I mean, the next thing he ought to do, if he's listening, is price comparisons. Go into your plan, and here's what it will cost on an out-of-pocket basis, relative to what we're paying. That would really begin to encourage more transparency and lower prices across the board.

Terry Wilcox (14m 13s):
So, one of the other key things we should mention, for patients, is you do not have to go through your insurance, this is what I was just pointing out, to access these generic drugs. You do need to have a prescription from your doctor, to access any prescription medication, but here's Mark again, on CBS.

Mark Cuban (14m 31s):
We're trying to keep the price as low as possible. As anybody who's had to deal with the bottom medication knows, there's a lot of induced anxiety dealing with insurance. There's a lot of overhead and administration dealing with insurance. Between your deductible, and your co-pays, we felt like there was a chance that we can get the price down so low, that it would still be cheaper to pay directly, than it would be to pay your copay or deal with your deductible.

Dr. Bob Goldberg (15m 2s):
There you go. Just the hassle alone of all those calculations.

Terry Wilcox (15m 6s):
Some people would just like the transparency of it. It's like, yeah, I may pay a few bucks more, but I know where the money is going, Cost Plus. I may pay a few bucks less, you know what I mean? It depends on your plan, but they would at least know what's happening. Like what it was going to cost when they walked in there, which can be half the problem, because you don't ever know.

Dr. Bob Goldberg (15m 33s):
And half the battle, right? So, the differentiator, obviously, is transparency. You can search for the drug, break-down the total cost and it shows you what the cost is from the warehouse, which is typically low. Here's our markup of15%, and there's a labor cost of $3 per order, which is standard, and the shipping, and it's all cut-and-dry. Compared to the machinations that you have to go through to get access to medicines from your health plan, I think convenience and trust is going to be a key point as well. It's one reason that Good RX has taken off and I think this is a great approach.

Dr. Bob Goldberg (16m 15s):
If it does work in this generic sphere, I think we're going to find other companies doing it in the specialty sphere as well.

Terry Wilcox (16m 23s):
It needs to happen, because we really need to make sure that the support, funds, budgets and everything are there for those innovative treatments that we haven't discovered yet. The only way that we can do that, or one of the primary ways, is we made sure there is a robust pathway to generics, biosimilars and complex generics that is easy and that makes things more accessible and more affordable as time goes on.

Dr. Bob Goldberg (17m 3s):
Recently, the FDA approved the use of an anti-diabetes drug for weight loss. There are now companies, that are bundling the cost of the coaching that they'll provide, and the cost of the medicine, which can be thousands of dollars a month out-of-pocket if you paid retail, and people get the whole package for $125 a month. Insurance companies are beginning to pay for that, and even if they aren't, there is a market for people to self-pay for a program, that over six months, would help you take-off weight and improve your wellbeing.

Dr. Bob Goldberg (17m 50s):
These are the kinds of innovative approaches to making products accessible, that we should see more of. Cutting deals with the drug companies and cutting deals with insurance companies to say, listen, we need to sell the product at this price, and depending upon the size of the market, or the size of the uniqueness of the condition, this will be a new model.

Terry Wilcox (18m 11s):
I think we're headed towards more transparency. I think we're headed there. So folks, there's a lot to talk about here. Obviously we're all for transparency, affordability, and access for patients. Those are the three key driving words for everything Patients Rising does. We have more links to this story and others in the show notes, so be sure to check them out. This episode of The Patients Rising Podcast is brought to you by Patients Rising Concierge. A new service from Patients Rising, that helps patients and caregivers, find the resources they need to find stability and support throughout their healthcare journey.

Terry Wilcox (18m 58s):
From finding a professional advocate to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more. Our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit patientsrisingconcierge.org or email us at askusanything@patientsrising.org. Up next, in recognition of ALS Awareness Month, Field Correspondent, Kate Pecora, brings us her conversation with ALS advocate, Julia, who sadly lost her partner to this horrible disease.

Terry Wilcox (19m 42s):
Here is her story.

Kate Pecora (19m 44s):
Today, I'm speaking with Julia. Julia's partner, Matt, lived with ALS and he has a very unique story relevant to the Compassionate Use policy that was adopted several years ago. Today we're going to speak with Julia about that experience, and her partner Matt's experience, living with their treatment and receiving treatment for ALS. Great to talk with you today, Julia.

Julia (20m 1s):
Thank you, Kate, so much for having me. I feel lucky to be able to share a story on this platform. Matt and I actually met when I was fourteen and he was fifteen. We were high school sweethearts. We had been together for a very long time. We stayed together when we were in college and starting to head into adulthood. He knew that ALS could be a possibility for him, because his mother passed away of ALS. They had the gene in the family, which unfortunately, if you have the gene, you will get the disease. That's how that goes. He and I had kind of planned our life around, this is something you'll get when you're 40 or 50. Fortunately, science has gotten us to the point where we could have had a child without that gene that Matt had, which was very cool.

Julia (20m 50s):
Unfortunately, he started experiencing some weakness in his left leg at age twenty-two, and we thought, he's young., he hurt himself. It's not terribly uncommon. It was not the case. My father is a physician, that went and spoke with him, and lo-and-behold, long story short, it was that awful diagnosis that we weren't expecting for another twenty some-odd-years, if ever. Immediately, there was a lot of shock, as you know. I'm sure, when you're given a death sentence, you're shocked, especially when you expected to have so much more time. He had watched his mother's whole journey with ALS, so he knew exactly what it was looking like and that was terrifying for him. I didn't know as much as he did, but from the two times I met his mother, right before she passed away, I knew what that looked like.

Julia (21m 36s):
As partners, we decided to call his mother's doctor, who Matt had stayed in contact with after she passed away, because they had started a study with his SOD1 gene, that was what was mutated for him, and his mother's strand. They had been working on a treatment based on what they learned from her autopsy. We gave him a call at the University of Massachusetts - Mass Memorial Hospital, and I guess, by the grace of God, you can say that they had something new coming up the pipeline and it was going to be done in a few months. They said he was a perfect genetic match, because it's stemmed from his mother. What this treatment would do is, it was a virus, and they were going to be using the virus as a vector to slow down or silence the gene.

Julia (22m 23s):
That was the idea. They told him they had no idea what was going to happen. He could die on the table. He could be ALS free. He could live his whole life. It only took us a couple of days to say, "Well, yeah, that's exactly what we want, because you're going to die of this disease anyway you look at it. What if this is it?" If it isn't it, what could we learn for his three brothers that are younger than he is?

Kate Pecora (22m 47s):
Since this was a new treatment, and Matt was the first to receive this, what did the process look like for trying to get an FDA approval?

Julia (22m 58s):
There was the process of FDA approval, which they had some difficulty with. Mass doctors originally had proposed it was going to be similar to a spinal tap, either way. They had proposed shooting some of the virus kind-of up in the spinal cord, up towards his head, and then the lower half, which would be isolating the part of the spinal cord that affects your legs and your other limbs. The FDA said that was too dangerous. They said they could not do both. Matt and I were appalled, obviously, too dangerous? He said flat-out to someone, that his doctor had to the FDA and it was too dangerous. So, the disease that's going to kill me, will kill me. Really? Too dangerous? It was frustrating, but this was before the treatment, so we figured we'll take it.

Julia (23m 43s):
He got this treatment. There were like fifty doctors in the room. There were people watching. We were terrified. I mean, absolutely terrified. I said goodbye to him that morning, because that could have been it, but it wasn't. It took a few hours. He was okay. He came out and was eating meatballs in a few hours, but we were kept under strict observation. We were back once a week for six weeks and then once a month for the rest of his life, essentially. They found that there were some positive results. It looked, originally, like his progression was a little bit slower, but until you had the monthly benchmarks, they weren't really sure.

Julia (24m 25s):
It seemed, that at least in his legs, the tests they completed-the muscular tests, seemed pretty strong. Unfortunately, his breathing kept declining, which was not optimal, so the FDA pulled out any support. In their eyes, he was not doing well enough, so no one else could get this treatment after him. Basically, it had failed in their eyes, which was really frustrating to the team. Matt had just gotten this. Super frustrating. However, four or five months after the treatment, it was Christmas Eve and we were sitting in a hot tub. I had put him, physically, into this hot tub. He can't walk, he can't use his hands and his foot started moving. His left foot, which had zero movement. I said, "You know what, you're sitting by a jet.

Julia (25m 5s):
Let me push you over." He was not sitting by a jet. His foot could move and I took a video. I not only sent it to his doctor, and you can hear me screaming in the background of the video, it's pretty funny. He sent it straight to the NIH and the FDA and basically said, take that. It does work and they signed back on. Lo-and-behold, Matt did get movement back as we counted on the monthly progress charts. His foot, which is not your lungs, but it's your foot. He could kick me in the middle of the night if he needed something, which became a good safety thing. He also started to get little movements in his hand, which he had completely lost, which is huge.

Julia (25m 47s):
In his doctor's opinion, had they been able to shoot some of that treatment up, his breathing capacity might've been saved. Really frustrating for us, because he said, "I don't need legs. I don't need arms. I need lungs and maybe vocal chords would be nice." He said, "That's not even essential. Lungs are essential."

Kate Pecora (26m 6s):
With that in mind, since Matt didn't have the treatment applied to the upper half of his body where his lungs would be affected, what would happen next?

Julia (26m 20s):
Unfortunately, he was full-time on a BiPAP, an exterior ventilator. He was about to make the transition from a BiPAP to being fully vented, which is a big decision, a really big decision. He made it and he wanted to be here for the long run. Unfortunately, he did not make it to that point. The day before our appointment, his diaphragm gave out and that was the end. However, they did learn from his autopsy, that the treatment looked like there was a lot there. Shortly after Matt died, they had given it to one other man who is still alive-A trial group, from what I've heard. Since we weren't married, I'm a little bit limited in the information I can get about the trial, because I don't have rights to any of his information.

Julia (27m 2s):
From what I have heard, and gleaned, and read in The New England Journal of Medicine about Matt, which is awesome, no one else has died. The adjustments they learned from him seemed to be successful, which of course, it's bittersweet for me to hear. Like seriously, there couldn't have been someone before him that they figured it out first, or they couldn't have just let him try? With that said, Matt had to be martyred, but the cause is the beauty of the second man who got the Compassionate Use doses, and that he's alive, and that access is important.

Kate Pecora (27m 38s):
Talk to me about the law that allowed this to move forward. How many years ago was he able to receive this therapy and what was the policies that allowed that to happen?

Julia (27m 55s):
Matt received his treatment in July of 2017. That was shortly after some legislation was passed in the House and the Senate, and signed into law by President Trump, that allowed terminally ill patients to receive a "hail Mary", so to speak, if we're going to use football terms and give them a chance at therapeutics that are not yet fully approved. That was really important to us. I had been following that legislation truly, because at that point in 2016, I believe when it was passed, this was still way down the line. Something that he, and I, were already paying attention to for when he got this as a senior citizen.

Kate Pecora (28m 32s):
One of the things that I wanted to get your take on is, I know that the FDA recently did approve a medication to treat ALS, so let's talk about that and what impact that has on the broader ALS community.

Julia (28m 47s):
Absolutely, and actually, the one that was just approved by the FDA was something that Matt, and his doctor, discussed him taking as well. If he had opted not to do this treatment, it didn't even have a name, but the "down-the-pike" treatment. Another option, that had been opened to him, was exclusively an intravenous treatment. He would have had to essentially sit in a chair, receive this treatment for two weeks at a time, basically all day. For the serious strain, that he had, which was typically around a two-year lifespan to the severity of his specific mutation, it would have added like three days to his life, or some really negligible numbers. To Matt, that wasn't worth the quality of life, which I think a lot of patients have felt. The FDA did just release the pill version, which I think is huge.

Julia (29m 29s):
I know Matt would have taken it, if they had let him take it, in conjunction. He was taking a couple others. One was an ALS pill, that hadn't shown too much promise, but it was something. I think that "something", that glimmer of hope every patient deserves to have. I think this is going to be huge in the ALS community. I've still been checking on Twitter to see some of the people, the persons with ALS, reactions. It has been a long struggle. Too long, because when Matt was diagnosed in 2017, they were still talking about this.

Julia (30m 13s):
Now it's 2022.

Kate Pecora (30m 14s):
Thank you, Julia. I really appreciate talking with you today.

Julia (30m 17s):
Thank you for having me. I really appreciate it.

Dr. Bob Goldberg (30m 20s):
We want to use this podcast to make your voice heard. If you have a story or a policy impacting you, or a loved one, you can share your experience right here on the podcast by becoming our next patient correspondent. To get started, just send an e-mail to Terry and me at podcast@patientsrising.org.

Terry Wilcox (30m 42s):
Thank you for joining us for today's episode. If you learned something new, pass the episode along on social media.

Dr. Bob Goldberg (30m 48s):
Make sure you don't miss out on future episodes. All you have to do is click the "follow" button to stay up-to-date and be the first to know when our next episode goes live.

Terry Wilcox (30m 60s):
We'll be right back here again next Friday with another new episode and until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!