What Would You Pay to Stay Alive?
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I want you to think about the most expensive item in your home. The thing that a burglar would be able to make off with and turn into cash right away. Maybe it's jewelry, your car. I asked ProPublica's David Armstrong to ponder this question. There's not anything terribly valuable in my home that I can think of.

Except for maybe your pill bottle. Well, very good. You're right. That would be the most valuable thing in my home by far. David takes this drug called Revlimid. It keeps him alive. It's also really expensive. You know, thieves often do look for pill bottles, but the value of my Revlimid

I think would even far exceed the street value of OxyContin these days. How much does it cost for one pill? So one pill today of Revlimid would be over $900, close to $1,000. ♪

Whoa. How many do you have on you at any one time? At any one time, I could have as many as 21. The cycle is taking the pill 21 out of 28 days. So at the beginning of the cycle, I would have 21 pills. Revlimid is a cancer drug. David has multiple myeloma.

Often how people find out they have multiple myelomas, they start suffering bone breaks or problems with their spine. And for me, it was a pain in my side that became really severe. And it turns out that I had a couple of broken ribs. I had a compression fracture of my spine and what are called lytic lesions, which are little holes in the bone throughout my body.

When you got your diagnosis, were you thinking about timelines? Were the doctors talking to you about that? Were they like, listen, this is serious? Well, they said it was serious. And the first thing I did after I received the initial diagnosis, which was in the emergency room, I went outside and did what a lot of patients do. I opened up my phone and I immediately started searching Google. And the first link I found said that the average life expectancy of a newly diagnosed patient was three to five years. And

Boy, that just took the wind right out of my sails. That was pretty devastating to read. It turns out that because of a number of new drugs, the prognosis is much better than that. A lot of people live for years and years now with this disease because of these drugs. It sounds kind of like a miracle. Most people would pay like anything for that.

I think that's true. I think that's true of any serious disease, any cancer. If someone tells you there's a medication that will extend your life, you're like, how do I get it? And frankly, I'll try and do whatever I can to pay for it. I got to ask, how much did it cost to make this drug that's helping you so much? I found out that it costs just 25 cents a pill to make it. How did you feel when you heard that?

You know, I was not naive to the ways of drug companies and pharmaceutical firms, but, you know, the difference between 25 cents and the nearly $1,000 a pill that my health plan was paying, wow, I just, that was really hard to understand. As a healthcare reporter, were you sort of like, I gotta figure this out? Yes, that was my reaction.

Today on the show, David wanted to figure out whether staying alive needed to be this expensive. Prepare to be outraged. I'm Mary Harris. You're listening to What Next? Stick around. This podcast is brought to you by Progressive Insurance.

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So David Armstrong was diagnosed with multiple myeloma a couple years back. And pretty much right away, his doctors told him he would be taking Revlimid to treat the cancer. When he looked this drug up on Google, though, he was surprised to find out where it had come from.

Well, what I found was that this drug is a so-called analog of thalidomide. And thalidomide has this really dark history where in the 50s and 60s, women who were pregnant were given the drug to treat morning sickness and also to help them sleep.

But unfortunately, the drug caused really horrific birth defects. More than 10,000 babies, as many as 12,000 babies, were born with malformed limbs and other birth defects. In fact, a number of them died shortly after birth.

In the U.S., it was never approved for sale because there was a reviewer at the FDA named Frances Oldham Kelsey who had some concerns. She thought that it had not been tested enough in terms of safety. And she refused, despite a lot of pressure, to sign off on it. And because of her, you know, a catastrophe really was averted in the United States. So, yeah.

This drug wasn't approved, but I guess it still existed out there? Like, how did it evolve to become a treatment for cancer? So it did exist out there. It was banned in most of the world, but a few places still made it because it turns out that the drug is effective for a complication of leprosy.

And, you know, leprosy is a rare condition. In the United States, you know, there's only a couple of hundred people with it at most times. But doctors knew that it worked for this condition for leprosy and they were using it. And who was selling it? Like what drug company? So there's a company called Celgene that at the time was a very small company. In fact, was losing money when the FDA approved it for leprosy.

Celgene and a lot of others thought that the drug would actually be a treatment for AIDS patients who were suffering from extreme weight loss, a complication of AIDS. And there had been some testing and some research that suggested that it might work to help those patients. But right around the time it got approved,

Yeah, you tell this wild story that basically there's this woman, Beth Wollmer, whose husband was diagnosed with multiple myeloma in the 90s. And she was looking for anything to treat him just to get one more year, one more month, whatever. And she was looking for something to treat him.

And she finds doctors in Boston who are testing drugs that cut off blood supply potentially to cancers and basically comes up with the idea like, oh, could we try thalidomide just because my husband's kind of at this really awful point in his cancer anyway? What's notable to me about this story is that this massive innovation of

was not driven by Celgene, the drug company. It was driven by some interested doctors and a very interested patient. Did that stand out to you too? Yes. You know, this was kind of a unique way for a discovery to be made, right? It was a wife, a spouse of a patient who was driving this discovery in terms of let's try it. You know, she wanted to try something to help her husband.

So what happened was they did try it, and at the same time, they gave it to two other patients at this hospital in Arkansas who also had multiple myeloma and were not doing well. You know, they were in hospice. They were not responding to any kind of treatments.

And for Ira Wollmer, the drug didn't work. He died a few months after he started to take thalidomide. But for one of the patients, he responded. His cancer markers started to decline in his blood work. And the doctors there could barely believe it because they didn't really think this would work. Nobody really thought thalidomide would work for cancer.

And when they saw the blood work, they realized for the first time in decades, they may have a treatment that will help multiple myeloma patients. So if I'm Celgene, the company that owns the patent on this drug, I'm pretty excited at this point. When did they finally bring the drug to market and how did they decide what kind of price point to give it?

So what happened was they started to play around with the compound a little bit, creating what are called analogs. So these are slightly tweaked versions of the parent compound. You might remove an atom here, put one here. And this is how they came up with the drug Revlimid, which allowed them to have stronger patents related to that. And it turns out the analogs are more potent. They can have a better or same effect with a much lower dose.

So they got this approved a couple of years after this thalidomide experiment and introduced it to the market at a price that frankly astonished a lot of analysts of $55,000 a year. So at the time, that was seen as really expensive. Yeah, it was. Because thalidomide, when it first was introduced to the market, was $7.50 a pill.

And now at $55,000 a year, you had a drug that was a multiple much higher from the original thalidomide. I'm just thinking about your own cost for medication. $55,000 is like a couple months, three months for you now. That's right. I mean, it's about $20,000 a month.

for the medication now. How many times have they raised their price since they released it? They've raised it 26 times since they initially introduced it late 2005.

What are the market forces driving that kind of increase in price? Well, you know, that was something else I wanted to get at in my story. You know, the United States is unique, really, certainly among the developed world in how we price drugs, how we pay for drugs. And the reality is when a drug comes to market,

the price of that drug is pretty much what the company determines the price is going to be. You're saying there were no market forces other than internal market forces to Celgene itself? That's essentially the case, and that's true with the price hikes as well. There's very little to limit price increases. Companies are, especially when they have a drug that doesn't really have a competitor, which for a long time was the case with Revomid,

you know, are free to raise the price whenever they think it's justified. When we come back, why it took so long to get a generic version of Revlimid, and why, even though it exists, that generic option isn't that much less expensive than the name brand.

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Hi, I'm David Sirota, investigative journalist at The Lever, Oscar-nominated writer on the film Don't Look Up, former Bernie Sanders speechwriter, and host of the chart-topping news podcast Lever Time. Each week, our team of reporters at The Lever exposes the events, news, and corruption that often go unreported by corporate media. So if you're looking for a podcast that goes below the surface, listen to Lever Time every week, wherever you get your podcasts.

The Supreme Court is weighing whether a right enshrined in the 14th Amendment of the Constitution really applies to everyone.

What happens to the 3.6 million American babies born each year if Donald Trump gets his wish and ends birthright citizenship? Every single one of those families will now have to scramble to provide documentation and prove the citizenship of their child and themselves in order to get that child recognized as a citizen who has a right to remain in the United States and not be deported from day one of their lives. I'm Dahlia Lithwick.

And on a recent episode of Amicus Slate's podcast about the law in the Supreme Court, Professor Amanda Frost joined me to examine the constitutional history of birthright citizenship and the havoc Trump's executive order purporting to end it would unleash. Find new episodes of Amicus every Saturday wherever you listen to podcasts. Amicus, because legal knowledge is power. You know, we have a whole system of generic drugs in this country.

Why was Celgene able to maintain an exclusive right to sell this drug over so many decades? It seems to me that this simple pill would be a prime candidate to become a generic. It would seem that way. And in fact, there was a lot of interest there.

The generic companies began to file interest in making a generic competitor, but they needed something to do that. They needed to test their drug against the brand name drug to prove to the FDA that it's bioequivalent and essentially the same product. But to do that, they needed to get samples of the drug.

But they couldn't do it because Celgene refused to sell it to them. Oh, that they can do that? That's a good question. They did it. Could they do it? Well, here's what happened. Because the drug is dangerous and poses the risk of birth defects, the FDA tightly regulated how it would be sold. So Celgene had a very...

strict government mandated program about how the drug was sold, which meant that they controlled the distribution system. So if you needed the drug to test it, you had to get it from Celgene, which is not usually the way it works. You could buy it from a wholesaler or somebody like that. And Celgene just refused to do it. Now, the government became interested in this. At one point, the FDA said, you need to sell it to these people. You can't use this safety program

as an excuse to keep generic competitors at bay. And then the Federal Trade Commission also became interested, viewed this as anti-competitive behavior. But neither agency forced the company to do it. And essentially, they were able to keep the government regulators at bay and continue to keep a monopoly on the market. To me, reading your reporting, Celgene came across interesting.

as kind of a sponge. I didn't get the impression from what you wrote that they ever came up with like a blockbuster drug on their own. They seem to have a lot of business trouble, actually. And Revlimid, this cancer drug, sort of floated them for a very long time. And then eventually they were like, OK, we got to merge with Bristol-Myers Squibb because we can't, you know, we don't have anything to sustain us. How do you see it?

Well, that's true. Revlimid, after I think the first full year it was on the market, was never less than two-thirds of the company's revenues. And ultimately, that's what led to the Bristol-Myers Squibb acquisition of the company in late 2019 for a little more than $70 billion. Wow.

And it seems like that merger, it was an opportunity for the executives at Celgene to go before Congress. And everyone there kind of knew what was going on. Like Representative Katie Porter, you quote her at length where she basically quizzed the CEO talking about Revlimid and basically saying, you basically spent the last few years refining your skills at price gouging, which is pretty direct. Very direct. Yeah.

did the drug improve? If I were to look at a pill and analyze it from 2005, when it cost 215 and I was looked today at when it cost 763, would that pill be the same? I understand your question about the pill. The pill, the manufacturing for it would be the same. Great. Thank you. And the fact of the matter is nothing did change. The drug was the drug from the start to today. What changed was the price.

What particularly struck me as someone who has had cancer, been treated for cancer, is the way that Celgene's executives talked about cancer patients, which is basically they'll pay for anything. So it's okay for us to keep jacking up our prices. Like there was internal debate about jacking up the prices at some point. And the debate was dismissed because these patients are desperate to

How has the cost of Revlimid impacted patients? Like, I know that you, you know, you are lucky. You seem to have a good health care plan that is paying for your care. But I imagine not every American is in that situation.

That's true. For me personally, the financial cost associated with the drug has been pretty minimal, a very small copay here and there. I've had a couple of different insurers since I was diagnosed with this cancer. But before I talk about individual patients, you know, there is a larger cost to the healthcare system. We all pay premiums.

I don't know anyone's premium who it's going down. It's a cost to employers who help subsidize the health care of their employees. So there is a larger effect from a high cost of a drug like Revlimid. But for individual patients, it can be very rough. You know, patients that have high co-pays or high deductible plans. I've talked to and read about numerous multiple myeloma patients who have

stopped taking the drug for a period of time because they couldn't afford a copay, who borrowed against their house or perhaps tapped into retirement plans before they were ready to retire. And there's a number of patients who actually imported the drug from India, where it costs pennies on the dollar. Well, I mean, you finally got put on the generic version of Revlimid, right? But how much did your costs go down?

So that's a very interesting part of the story. Just this year, just a couple months ago, I was put on the generic. I really didn't have a choice because this is what my insurer was saying it would pay for. And I...

had to actually inquire with them because I wanted to know how much they were paying. And it was really stunning. The cost of the generic today is $70,500 a month. So it's a couple thousand dollars cheaper. So, I mean, there is a savings, but it's not dramatic. And is that because the generic can charge whatever they want to? The reason for that is because Celgene and then Bristol Myers Squibb made a deal with these generic companies

We won't fight you. We won't litigate with you. We'll license the drug so you can sell it as a generic, but you can only start doing so in 2022, and you can come into the market in very limited fashion. I think the first year, the percentage of generics that they agreed to was less than 7% or 8%, and there's still not full generic competition.

So that's why the price is so high. And it's good for the generic companies. They're making a ton of money off generic Redwood. I can tell you that. And the brand name company is also still making a lot of money because the price is still high. Okay. I'm so mad. I'm so mad listening to you.

Yeah, it's counterintuitive, right? You figure generics come on the market. Oh, the prices are going to go down. You can get this cheap generic equivalent. But this happens a lot where the generic makers make deals with the brand name companies. Sometimes brand name companies pay them to stay out of the market. They don't have to do anything. They don't have to make a drug. They're actually paid to stay on the sidelines. So this is a variation of that. But the ultimate impact, of course, is we all pay more.

You know, drug prices have become this thing that everyone is concerned about. I think it's a bipartisan issue at this point. And, you know, just a little bit before you and I got on the line, President Trump released this executive order about drug pricing.

And the whole aim is to bring costs down by saying the U.S. is going to try to pay what the rest of the world pays. And it struck me as so interesting because the executive orders seem to get some things right and some things a little more question mark, question mark, question mark. Like, yeah.

The first line of the executive order is the United States has less than 5% of the world's population and yet funds around three quarters of global pharmaceutical profits. And I think that is correct. But on the other hand, I'm not sure just saying we would like prices to be better is going to work. I think that's right. I think at the same time, the administration should get some credit for

bringing this issue to the forefront and speaking about it because it is an important issue. But the executive order really doesn't have any mechanisms for how we're going to accomplish lower drug pricing. It's, I guess, aspirational at best.

about what the administration wants to see happen. And I think the reason for that is it's complicated, right? To get the kinds of reforms or changes that would result in lower drug prices, you probably need legislation. You need rulemaking at the big government agencies that pay for a lot of this healthcare, like Medicare and Medicaid.

And ultimately, I think the problem is going to be no matter what they settle on, it's sure to be challenged in the courts. I know that other countries pay a lot less for their drugs, but why? There's a couple of reasons. One is...

The United States is unique in that we have many, many payers of health care. We have some big government payers, and then we have hundreds, if not thousands, of private payers. So it's a really fractalized system where there's just a lot of different entities that are responsible for health care. In most other countries, there's a single entity. It's the government. There's government health care. So they have a very powerful position to start with. If you don't make a deal with us,

Your drug may not be sold in this country. So there's a negotiating strength that doesn't exist here. And then the other thing they do, they analyze these drugs. Are they cost effective? What is a price that would make it cost effective? And then they go to the companies and say, here's what our analysis shows. They also look at what other countries are paying. And here's what we'll pay. And that's essentially how it goes. And there's a negotiation. None of that happens in the United States.

It sounds very reasonable what you're laying out. Yes, and it's resulted in much lower prices in the rest of the developed world. David, how are you doing now?

How are you feeling day to day? Yeah, well, thank you for asking. You know, most days I feel pretty good. I'm fortunate that my cancer is in remission. I'm on medications, including Revlimid, to maintain remission. And those medications come with side effects, you know, most notably fatigue. But I feel very good about where I am and very grateful for where I am today.

You've written about how a lot of cancer patients, they finish with chemo and they ring a bell for the whole unit to hear, like, I'm done. Yay. And how you didn't get to do that before.

And to me, I hear that and I think like it puts you in such an interesting position because you are deeply lucky to have benefited from all of these innovations from drug companies. And at the same time, you are tied to these companies for the rest of your life, you know? That's true. And I'm...

look, I'm rooting for these companies. I'm rooting for companies that maybe we don't even know about today that are just an idea in a lab somewhere. I think every cancer patient who's in a position where they're on maintenance treatment or there's the specter of recurrence wants more and better treatments. You know, we're rooting for that. And I think that, you know,

When I got into this story, I thought, wow, we spend so much on the medications we have now.

How are we going to develop other drugs if we're not redirecting at least some of that money to the important research that's going on? And there's so many brilliant researchers out there investigating new methods for treating not only this cancer, but so many others. How can we support them? How can we get them what they need and encourage them to come up with new things that will help patients for decades to come? David, thank you so much for your reporting and for coming on the show. Thank you.

Well, thanks for having me. I enjoy talking with you. David Armstrong investigates health care over at ProPublica. And that's our show. What Next is produced by Paige Osborne, Elena Schwartz, Rob Gunther, Anna Phillips, Ethan Oberman, Isabel Angel, and Madeline Ducharme. Ben Richmond is the senior director of podcast operations here at Slate. And I'm Mary Harris. Go track me down over on Blue Sky. Say hello. I'm at Mary Harris. Thanks for listening. Catch you back here next time.

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