DAVE DAVIES, HOST:
This is FRESH AIR. I'm Dave Davies. Our guest today, David Armstrong, is a veteran investigative reporter who, in 2023, was writing stories about challenges for patients in American health care when he was suddenly plunged into his subject in a deeply personal way. He was diagnosed with multiple myeloma, an incurable blood cancer. He would soon be prescribed a drug called Revlimid, which is cheap to make but really expensive to buy. A single pill costs nearly $1,000 - roughly the price of a new iPhone.
Armstrong decided to research the development and marketing of the drug. And he discovered tactics used by drug companies to maintain monopolies on their medications as long as possible and keep prices high. Revlimid is one of the best-selling pharmaceuticals of all time, with total sales of more than $100 billion. This is also remarkable, since the parent compound in Revlimid, thalidomide, was banned in most of the world in the 1960s, after it was shown to cause severe birth defects when given to pregnant women.
David Armstrong is a senior reporter for ProPublica who focuses on health care. He previously reported for STAT, the online service reporting on health and medicine, as well as the Boston Globe and The Wall Street Journal, where he shared a Pulitzer Prize for coverage of the 9/11 attacks. His new story about Revlimid is "The Price Of Remission." You can find it at the ProPublica website.
Well, David Armstrong, welcome to FRESH AIR.
DAVID ARMSTRONG: Thanks for having me.
DAVIES: I want to begin with your illness and the drug that you need to treat it. Multiple myeloma is an incurable blood cancer. Tell us about its symptoms, the course it typically takes in the human body.
ARMSTRONG: Sure. Well, I can describe to you what happened in my situation. And every case or every patient's a little bit different, but for me, it started with a pain in my side that wouldn't go away. It felt like, for many weeks, a bad runner's cramp. And I sought out care for it and went to a doctor, who thought, you know, this is probably a muscle strain. But it ended up getting worse. And one morning, I woke up and I couldn't get out of bed. I mean, I had to grip the wall, I was in so much pain, and decided to go to the emergency room. And it was there they did some testing, some scans.
And what happens with a lot of multiple myeloma patients is the disease really impacts the bones. It gets in there with these things called lytic lesions, creates holes in the bones, and many people don't know they have multiple myeloma until they break a bone. I talked to another patient who was golfing and took a swing, and his spine - part of his spine literally collapsed. And he went to the hospital, and that's how he found out he had this disease. So it often lurks without people knowing it's there, and it takes something fairly dramatic for a patient to discover it. So in my case, you know, I found out that I had it and then began a course of four drugs, including Revlimid.
DAVIES: And how long do, typically, patients live with this illness?
ARMSTRONG: Well, so, you know, one of the amazing things about this particular cancer is that, you know, 20, 25 years ago, it was a very grim prognosis. You know, two, three, maybe five years is what many patients lived with the cancer, you know, before passing away. That has changed dramatically, thanks to drugs like Revlimid, in the past 10, 15 years in particular. And for many patients, you know, they can almost live with it as sort of a chronic disease. If you fail one line of treatment, there's now second, third, fourth, fifth lines of treatment. So, you know, it's many more years than it was just 15, 20 years ago.
DAVIES: And with the treatments you have now, what kind of shape are you in? How's your day?
ARMSTRONG: So for me, it's pretty good. You know, I do have some side effects from the drugs I take. You know, there's things like fatigue. But, you know, most days, I feel good. I'm able to exercise fully and grateful that my cancer is in remission.
DAVIES: So, being the dogged reporter that you are, you decided there was a story here in the high cost of the drug. We should note that you don't pay $1,000 a pill, right? You're lucky to have a health plan which covers it. But that's what it costs the health plan, right?
ARMSTRONG: That's right. So, you know, when I was diagnosed with this cancer, I was in the hospital. And one of the doctors said, you know, you'll get a regimen of drugs, and one of them will be a thalidomide drug. And, you know, I've covered and written about medicine for a number of years, and I said, thalidomide? How is that possible? This is a drug that does so much harm. It's - you know, it's notorious. So that piqued my interest. I wanted to know how this drug that was so dangerous became a cancer fighter.
And then once I started taking it and received my first claim summary, I was really taken aback by the price. And, look, I'm not naive about drug pricing. You know, I've written about health care for the better part of two decades. I wrote extensively about Purdue Pharma and the Sackler family, and how they manipulated the marketplace to make OxyContin appear safe and at low risk for addiction. So, you know, not naive to the ways of drugmakers' drug pricing and marketing. But even with that background, I couldn't believe that nearly $1,000 a pill is what my health plan was paying for this drug. So I wanted to know how this was possible.
DAVIES: You know, thalidomide is such a notorious drug. Tell us a little bit about why it was originally developed and what caused the birth defects.
ARMSTRONG: So thalidomide was developed by a German pharmaceutical company as a treatment for morning sickness for pregnant women, and also to help them sleep. And it was sold in Europe - in Germany, for instance - over the counter, and there were advertisements in the U.K. telling women how safe this drug was. And it turned out not to be the case. Even a single dose of thalidomide was associated with birth defects. It was incredibly potent that way, and tragic, as it turned out. And more than 10,000 babies - and some estimates are up to 20,000 babies - primarily in Europe, Canada, Australia, were born with some really horrific birth defects, and a large number of them died shortly after birth. And this was just a - you know, a horrific scandal that rocked the developed world in the '60s and led to a number of reforms for how drugs are tested for safety, including here in the United States.
DAVIES: And the thalidomide would basically cut off the development of blood vessels to the fetus?
ARMSTRONG: Yeah. The way I understand it is it deprived the fetus of new blood vessels that the fetus needs to develop.
DAVIES: Right, which was, ironically, what made it helpful in fighting cancer tumors.
ARMSTRONG: That's exactly right.
DAVIES: Right. So it's a fascinating story, as you tell it in the article. I mean, there's a breakthrough at a hospital in Little Rock, Arkansas, aided in part by a tenacious woman named Beth Wolmer. You want to tell us that story?
ARMSTRONG: Yeah. So Ira Wolmer, Beth's husband, was a interventional cardiologist in the New York area who was diagnosed with multiple myeloma in his 30s. Unfortunately, for him, this was in the mid to late 1990s, when there were really few options for myeloma patients. So they went all over the country to different cancer centers, looking for a doctor who could promise them something more than just, you know, a couple of years. And they ended up in Arkansas with a doctor named Bart Barlogie, who was gaining a reputation for trying just about anything to help multiple myeloma patients. And people literally from all over the world were going to his clinic in Little Rock.
So the Wolmers arrived there, and unfortunately for Ira Wolmer, he wasn't getting better. They did some stem cell transplants with him, but he relapsed after each one of them and was just getting sicker and sicker. But Beth Wolmer wouldn't quit. You know, she would read medical journals all day long. She'd call researchers all over the world. She was, you know, bound and determined to find anything that would help her husband. And it was in the course of doing that that a researcher told her about the work of Judah Folkman in Boston, who had a theory that if you could block blood vessel growth, you could starve tumors of what they needed to grow. And his lab was studying thalidomide. One of his researchers was, you know, deep into studying this and had actually published some work about it. So when Beth finally connected with him, he said, try thalidomide.
DAVIES: And she went to Barlogie, the doctor. And he said, try it?
ARMSTRONG: Yeah. I mean, you know, at the time, you know, nobody really thought that this would work. I mean, it was an idea that did not have a lot of people endorsing it. But, you know, Ira Wolmer was in a desperate strait, and, you know, Bart Barlogie had a reputation for trying things. So even though he might have been, you know, somewhat skeptical about it, he agreed to try it on both Ira Wolmer and two other patients. And unfortunately, it didn't work for Ira Wolmer. He didn't get better, and he died a few months later. But one of the patients, a guy named Jimmy, showed a miraculous recovery. I mean, he was at death's door, and all of a sudden, the cancer markers in his blood started going down. And the folks in Arkansas realized that, for the first time in really forever, they had a potential drug that would help multiple myeloma patients.
DAVIES: So the doctor who was treating Jimmy, this multiple myeloma patient, I guess, was involved in a study of - was it - 89 patients or so, I guess, and the results showed what?
ARMSTRONG: Well, so after the response that Jimmy experienced with the drug, they immediately launched a larger trial with these 80-something patients, as you mentioned. And you have to keep in mind that it had been 30 years since any kind of treatment for multiple myeloma had been approved, and even that was a chemotherapy drug that was just sort of blunt force. You know, it killed the good cells, the bad cells. It's a very hard drug to tolerate. And the success rate for that drug, which was followed by a stem cell transplant, you know, was a mixed bag. So there was tremendous excitement about the possibility of a drug, first of all, that you could just swallow and that might help multiple myeloma patients. So they did this study, and they found these were patients who were high risk and really running out of options, and one-third of them showed declines in cancer in their blood work, which was something that doctors in the specialty had never seen before. It was an incredible response.
DAVIES: So it turns out there's a company called Celgene that held the patent for thalidomide. What did this discovery do to their financial position?
ARMSTRONG: Yeah, so Celgene was a small struggling company in Northern New Jersey, who was studying thalidomide with the idea that it would be a treatment for AIDS patients who were getting it in the black market from places like Brazil and using it to treat a condition associated with AIDS where patients would lose a tremendous amount of weight, a dangerous amount of weight. And they thought that there'd be a market for that. They - interestingly enough, to get FDA approval, the FDA approved it for a complication of leprosy. Doctors all over the world had been using it for leprosy patients to treat this condition that often causes painful skin lesions and other things. But, you know, there's only - you know, in the United States, at the time - you know, hundreds of leprosy patients, a tiny, tiny market. But when the Arkansas results came in, the people at Celgene immediately realized that this was a cancer drug, and that was a game changer for the company.
DAVIES: You know, it's interesting that when they were using the thalidomide-based drug to treat AIDS patients, they kept the prices low. And there was an interesting explanation for this, which did not apply to the multiple myeloma patients. Do you want to explain that?
ARMSTRONG: Yeah. So when the drug was initially approved, and again, technically for leprosy, but once it's approved, doctors are free to prescribe it off-label, they call it for other indications. And the CEO at the time was speaking to - at an investor conference and said, you know, look, we kept the price low because that's what you do if you don't want protesters at your door. In other words, the AIDS community was very active. They would protest if there were developments that they thought ran contrary to the interests of the AIDS community. So they were concerned about that. And he said to the investors at the time, we have a lot of room for growth now.
DAVIES: Because multiple myeloma patients wouldn't protest?
ARMSTRONG: You know, essentially, that's the implication. You know, one of the executives at Celgene said at the time the company had the impression that cancer patients would pay whatever it takes.
DAVIES: We need to take a break here. Let me reintroduce you. We are speaking with David Armstrong, senior reporter for ProPublica, investigating health care. His new article about the high cost of the cancer medication Revlimid is called "The Price Of Remission." We'll continue our conversation in just a moment. This is FRESH AIR.
(SOUNDBITE OF JULIAN LAGE GROUP'S "IOWA TAKEN")
DAVIES: This is FRESH AIR, and we're speaking with David Armstrong, a senior reporter for ProPublica, investigating health care. His latest article is about the extremely high cost of Revlimid, a drug used in treating the blood cancer multiple myeloma. Armstrong himself has been diagnosed with the disease.
So we were saying that there was this discovery that thalidomide, this drug which had such a terrible reputation for causing birth defects, proved effective in treating multiple myeloma. And the patent was held by Celgene, this little pharmaceutical company. And it's interesting you write that, I guess not all patents are created equal. Celgene's patent was limited in a way. How and why does this matter?
ARMSTRONG: So the problem that Celgene had with the thalidomide patent is they did not have a patent for the active ingredient. And that's because thalidomide was such an old drug. It was discovered and developed in the 1950s by a German pharmaceutical company. And for drug makers, the active ingredient is a really important patent. So Celgene started to explore alternatives to thalidomide. And there was two reasons for that, at least two. One is they hoped to find a drug that didn't cause birth defects and a drug that they could patent in a more influential way. So they started studying analogs of thalidomide, and this is just a slightly tweaked version of the parent compound. You know, you move an atom here, do this here in the chemical structure. And that's how they ended up developing Revlimid.
DAVIES: And when they finally released the drug in 2005, how expensive was it?
ARMSTRONG: So in 2005, they released the drug with a price of $55,000 a year. And that really surprised a lot of people, including the analysts who follow the company. They thought that it would be half as much as that. But the company did its own due diligence, and that was a price they thought that they could justify, and it ended up being a price that people paid.
DAVIES: And what did it cost to manufacture a pill?
ARMSTRONG: So the cost to manufacture Revlimid is approximately 25 cents a capsule. And that was true at the start, and it was true through most of the history of the drug, and that's according to a Celgene official who testified in a court case.
DAVIES: That heavy cost drew criticism, of course, including from some doctors treating multiple myeloma patients. How did the company respond to complaints that this was just too expensive? I mean, you know, the typical claim is, look, we spend a lot on researching and developing these drugs. I mean, that really wasn't the case here, was it?
ARMSTRONG: No. I mean, there's certainly costs associated with developing the drug. You know, Celgene should be given credit for developing this drug. It's not easy to get FDA approval for a drug, and running clinical trials is hard business. You know, that being said, the company estimated about $800 million was spent to develop Revlimid, a few hundred million more to test it in clinical trials for other cancers. You know, when you consider the revenue in excess of a hundred billion dollars, you know, it's a fairly small amount in terms of the research and development costs for this particular drug.
DAVIES: So when Celgene creates Revlimid, and it's an effective treatment for this disease, they have to deal with the fact that, you know, you don't keep an exclusive patent forever. There are laws that allow generics to eventually come in, provide competition and lower prices. This company was remarkably effective in stalling that. How did they do it?
ARMSTRONG: They did it by turning the most dangerous aspect of this drug - the fact that it potentially causes birth defects - into an asset. They controlled distribution because the FDA, in approving the drug, mandated a safety program. They wanted to make sure that only the patients who needed it got the drug. They didn't want to see somebody accidentally take it and get pregnant and develop a birth defect. They were extremely concerned about that. So they controlled the distribution, and that meant that generic companies who wanted to develop a competing product had to acquire Revlimid from Celgene because you have to test your generic product against the brand name to prove to the FDA that they're essentially the same thing and safe. They couldn't get the drug from Celgene. Celgene simply refused to sell it to them, and they controlled the distribution. So that enabled them to really maintain a grip on the market for a number of years beyond the exclusivity period that the FDA granted them.
DAVIES: And the FDA and the Federal Trade Commission became aware of this, took some steps, but somehow were ineffective, right?
ARMSTRONG: They became aware of it. The FDA at one point ordered or directed Celgene to sell to a generic competitor. The FDA didn't have any enforcement ability, however. The Federal Trade Commission did do a lengthy investigation, and the staff proposed taking legal action against Celgene, but that didn't happen. The company promised that they would sell the drug. The commissioners that are needed to approve litigation thought that they were going to sell the drug and were not interested in pursuing litigation at that time. And that enabled them for several more years, again, to have this market all to themselves without any competition.
DAVIES: So what did that mean for Celgene in the end?
ARMSTRONG: Celgene still had a monopoly on the marketplace, and they maintained that monopoly until 2022. In 2015, they settled with one of the generic companies who was involved in litigation with them. And that settlement required the generic maker to stay out of the marketplace until 2022, and even when it comes into the marketplace in a very limited way - less than 10% of the market. And what's the effect of that? The price still stays high. There's not unfettered competition with generics until next year.
DAVIES: 2026.
ARMSTRONG: That's right.
DAVIES: For a drug that was released in 2005. So that's a long stretch when Celgene kind of had the ability to raise the cost of the drug at its own discretion. What did you discover about the price hikes?
ARMSTRONG: What we found is the company, in certain situations, used Revlimid to boost overall revenues. There was a situation in 2014 where Revlimid sales were not up to what the company expected, and a memo was sent out saying, we need a price increase. Another situation in 2017, where they had a drug that was very promising for another condition called Crohn's disease failed, and they abandoned that project. And the day they abandoned that project, they raised the price of Revlimid 9%. You know, we described it essentially as a piggy bank. They could tap Revlimid whenever they needed to, and there was really no regulator or governor on the price increases. It was really up to the company.
DAVIES: And you found some evidence of objections even within the company, right?
ARMSTRONG: We did. 2017 - they raised the price 20% during the year. And one of the company officials filed a whistleblower complaint, and in her complaint, she said she was at a meeting, and she objected to these price increases. She said it was just too much. And she said the CEO admonished her, said, what's the worst that's going to happen, a bad tweet? And that's how she said they viewed these price increases.
DAVIES: So that was the company, the CEO's response - a little complaining. Don't worry about it.
ARMSTRONG: Yeah. Might be a bad story here or there or a bad tweet, but, you know, why wouldn't we take the increase, is what she quoted him as saying.
DAVIES: We need to take another break here. We are speaking with David Armstrong. He is a senior reporter for ProPublica. His new story about the high cost of the cancer drug Revlimid is "The Price Of Remission." He'll be back to talk more after this short break. I'm Dave Davies, and this is FRESH AIR.
(SOUNDBITE OF ANORAAK SONG, "HERE YOU GO")
DAVIES: This is FRESH AIR. Our guest is David Armstrong, senior reporter for ProPublica. His latest story is about the high cost of the cancer-treating drug Revlimid, which costs about a quarter a pill to manufacture, but sells for nearly $1,000. Armstrong was writing stories about challenges in the health care system in 2023 when he was diagnosed with multiple myeloma, an incurable blood cancer. He was prescribed Revlimid and began looking into the history and marketing of the drug. His new story on the ProPublica website is "The Price Of Remission." We recorded our interview Monday.
You know, along with the story that you've just published about the price of Revlimid, you have a companion story which asks the question, "Why Do Americans Pay More For Prescription Drugs?" And you're right that Americans do pay more than other wealthy countries for the same drugs. Why?
ARMSTRONG: Well, I think the big reason is that here in the United States, we do not have a single payer of health care. We're one of the few countries where the government is not the provider or the sole provider of health care. And that makes it hard to negotiate. We have a very fractionalized system in terms of the number of payers. You know, there's hundreds and hundreds of private payers. Even among the government, there's Medicare, Medicaid, the Veterans Administration, Department of Defense, who are all big payers. So it's very hard to negotiate a price when everybody's doing their own negotiating.
DAVIES: Right. Well, you know, President Trump has announced that he's signed an executive order, which he says will require pharmaceutical companies in the United States to give Americans the lowest price they charge to other countries, which he says are much cheaper in Europe, for example. And he says that'll have a big impact. What's your sense of what we might expect from this effort?
ARMSTRONG: Well, you know, I think first of all, the administration should be given some credit for bringing attention to this issue and pledging to do something about it. I think the executive order didn't have a lot of specific mechanisms for how this is going to be accomplished. A lot of it will be down the road. They talk about getting together with the drug companies and discussing prices of certain drugs. And if that doesn't work, they could turn to rule-making, which would probably be Medicare and Medicaid programs, instituting rules on what prices they will pay for drugs.
But, you know, a lot of it is - the devil's in the details here, and I think we'll have to see. It's a complicated thing to get these prices down, you know, that doesn't even address the issue of what drug prices are launched at. You know, cancer drugs in particular are being launched at prices that are so expensive that, you know, you have nowhere to go when you start negotiating a decreased price because they started so high. So we'll have to see.
DAVIES: Right. You know, there's been a lot of discussion of the federal government negotiating for better prices for Medicaid and Medicare, where they're - the government is, in fact, the one buying the product. In the case of, you know, controlling transactions among two private entities - right? - I mean, an American drugmaker and American buyers and those who buy in Europe - you're really talking about price controls, aren't you?
ARMSTRONG: I think you can make the argument it is. And the reality with, you know, things like this executive order is that whatever comes from it in terms of real, concrete actions is likely to be challenged in court. You know, the Trump administration ran into this problem the first time around. They proposed a very modest, I think, idea where they would test out drug pricing for some of the Medicare drugs that are administered in a doctor's office. And that, you know, was held up by the courts, and then the first administration expired. So it's going to be a fight. You know, the pharma lobby is not to be underestimated. You know, they spend billions of dollars on lobbying, or millions, I should say. So this will be a tough fight, trying to wrangle prices down.
DAVIES: Right. Now, the Biden administration has claimed credit for reducing prices of certain widely used drugs, I think particular diabetes medications. Is that similar, different here?
ARMSTRONG: The Biden effort, frankly, was much more modest, at least in execution. The Trump administration is promising, you know, greater results. We'll have to see. But, you know, essentially, the Inflation Reduction Act that was from the Biden administration allowed Medicare some limited ability to negotiate prices on, in the first year, 10 drugs, the next year, 15 drugs. But the Congressional Budget Office found that those impacts are going to be very modest. You know, it's not going to change the game, essentially.
DAVIES: You know, one other thing President Trump said when he was talking about his new executive order is that he plans to cut out the, quote, "middlemen" in drug purchasing who make a fortune without ever offering a product. I guess these are presumably the pharmacy benefit managers, whose role I've read about but don't really understand. Is he right?
ARMSTRONG: Well, you're not alone in not understanding that. It's very opaque. It's very secretive. Lots of people have tried to crack the code there, and it's difficult. These are middlemen that set prices through sometimes secret rebates and discounts back to the drugmaker. And on the other side, they have the health insurer. And a lot of people have called for transparency in pricing. What is the actual price, taking out all of these rebates and other things that the middlemen put in? So there's been a lot of calls to eliminate the middlemen. President Trump said something like, you know, they're taking money out of the system without actually making a product. And I think there's some truth to that. But again, this is a very entrenched interest in the drug pricing arena, and it'll be hard to do.
DAVIES: You know, the drug companies say in their defense that, yes, they make a lot of money, but that's the cost of doing all the expensive research and testing that it requires to get new medications, to innovate. How well does their defense stand up?
ARMSTRONG: Well, you know, the fact of the matter is - and there's been some studies about this - you know, industry funding of research is certainly important, but government funding has been just as important. You know, 300-and-something drugs approved by the FDA in the last decade. All but two of them had some element of government funding in them. So there are some studies out there suggesting that the industry estimates of what it costs them to bring a drug to market, what they spend on research and development, have been inflated. And perhaps most damning, the House Oversight Committee did a study that found drugmakers spend more on stock buybacks and investor dividends than they do on research and development.
DAVIES: You know, I've always wondered when - I mean, like in the case of Revlimid, I mean, the medical breakthroughs, the research breakthroughs, occurred here, I guess, at a hospital in Arkansas. And doctors in Boston - what kind of credit or compensation did they or their institutions get for this breakthrough drug?
ARMSTRONG: So the doctors in Arkansas didn't get anything. At least the ones I've spoken to, you know, there was no financial benefit to them from this discovery. And, you know, the ones I talked to said they really weren't looking for that. They were just incredibly gratified to find something that was going to help patients. You know, it was a pretty grim period where, you know, they want to help patients. They want to get them better and give them an extension of life, and it was really hard to do before this discovery. The Boston doctors who were researching this drug - they didn't directly get something, but their institution did. They get royalties from Revlimid, so there is a little bit of a benefit there to the research institution.
DAVIES: Is it typically the case that, you know, grants from the National Institutes of Health, which go to, you know, research hospitals and teaching hospitals all over the country - that when they achieve something that's lucrative for a drug company, they share in the proceeds?
ARMSTRONG: Yeah, I think usually that's the case. And, you know, a lot of the most important developments have come out of academic labs, hospital labs. And, you know, these labs are willing to take chances that often pharmaceutical companies aren't. You know, they will study things that a drug company might look at and say, oh, there's not a big enough market, or we're not sure that this will work. So once they're found in the labs, they often strike deals with pharmaceutical companies. It might be a royalty arrangement or something else, but that's not uncommon.
DAVIES: Going to take another break here. Let me reintroduce you. We are speaking with David Armstrong. He is a senior reporter for ProPublica investigating health care. His new article about the high cost of the cancer medication Revlimid is "The Price Of Remission." We'll talk more after this break. This is FRESH AIR.
(SOUNDBITE OF THE WEE TRIO'S "LOLA")
DAVIES: This is FRESH AIR, and we're speaking with David Armstrong, a senior reporter for ProPublica investigating health care. His latest article is about the extremely high cost of Revlimid, a drug used in treating the blood cancer multiple myeloma. Armstrong himself has been diagnosed with the disease.
You know, we talked about the high cost that people pay for prescription medications. You've also written about many cases in which insurance companies deny doctors and patients reimbursement for certain tests or treatments that they have ordered. And you wrote extensively about a young man named Christopher McNaughton who suffered from a condition called ulcerative colitis. This really affected him in a bad way - got it when he was in college. He finally got to the Mayo Clinic. He had a doctor, Edward Loftus, who put him on doses of two biologics, which are more expensive drugs 'cause of the way they're produced. But his insurance company, UnitedHealth, scrutinized the cost. What ensued then?
ARMSTRONG: Well, you know, this was a situation where Christopher McNaughton had a very serious case of ulcerative colitis. He had to drop out of college. He was a basketball player in college. He was losing a tremendous amount of weight, so it was a really detrimental effect to his life. And he struggled to find a specialist who could give him some relief from this disease. And that's when he got to the Mayo Clinic and found Dr. Edward Loftus, who prescribed a pretty aggressive regimen of drugs that were very expensive.
And the interesting thing about Christopher McNaughton's case is he sued UnitedHealth and was able to access records about the company's decisions on his health care, including some audio recordings, and it was apparent from these records that cost was the issue. And what they did was they denied his care, saying it was not medically necessary because the regimen that his doctor prescribed was not an ordinary regimen. Chris had a very extreme case, and his doctor said that cutting him off in this regimen would be life-threatening.
DAVIES: Right. Even delaying care could be terribly damaging, right?
ARMSTRONG: That's true. This is a - you know, a very serious case that had a debilitating effect on a young man.
DAVIES: Yeah. There was also a moment at which UnitedHealthcare said that the doctor who had diagnosed him and had provided this elaborate and expensive treatment - that he was agreeing that a lower dose of the medication would be medically appropriate, which was simply not true, right?
ARMSTRONG: It was not true, and it was reflected in internal documents that he had said this when he had never said that. You know, they did admit later that he'd never said that. But there was such an effort to control the cost of Chris McNaughton's care that these kinds of things happened - in this case, you know, something that simply wasn't true, and in other cases, sort of misrepresenting what his care was all about. And, you know, finally, Chris did win his case. You know, he won an agreement from the company to continue his care. A lot of details of that settlement are not public, but it took a tremendous effort, and most people are not so equipped to do something like that. In fact, it's so rare to find somebody who's actually sued their health insurer over denied care. It's an expensive proposition. People are sick. They don't necessarily want to go through it. So his case was extraordinary, both on what it revealed and the outcome.
DAVIES: What did the UnitedHealthcare officials say when you reached out to them for explanation? I mean, you know, they had these documents, these recordings. It must have looked terrible.
ARMSTRONG: Well, they didn't answer my specific questions but did say that they ultimately paid for his care. And they did point out that the dosages he was receiving, you know, exceeded what was in FDA guidelines, which, you know, his doctor said was necessary to get his disease under control.
DAVIES: You know, you and some of your colleagues at ProPublica looked into companies whose business it is to review claims that insurance companies have been submitted for reimbursement and help decide what to pay and what not to pay. I don't know if I'm accurately stating this. One of the biggest is called EviCore. There's another one, Carelon Medical Benefits Management. What did you find that these companies do? What role do they play?
ARMSTRONG: These companies essentially review claims from the insurance company's insureds and decide if they should be paid. So they're farming out the work of deciding what's appropriate care for their patients, and this is a growing business. You know, one of the things we found is that companies are engaging in a lot of prior authorization where you can't get a treatment or a drug until they say it's OK. And for patients, this can be really disturbing. A lot of them have said that, you know, essentially the insurance company's playing doctor and deciding what I should get for care rather than my own doctor deciding it.
DAVIES: Right. Now, insurance companies note that there are tests and treatments that are unnecessary or ineffective and that some unscrupulous doctors and other providers pad their income by ordering tests and treatments that they know aren't indicated. I mean, that is a real thing, right?
ARMSTRONG: That is certainly a real thing, and I've actually written about some of that in the past. I think what has happened is that it has been broadened to such a degree that it covers a wide swath of care. You know, cardiology, there's a lot of reviews. Oncology, there's reviews. Certainly in the orthopedic world, you see a lot of insurance companies applying their own medical guidelines and analysis in determining whether someone should get that care. So I think it's true that there are cases where doctors overprescribe or order tests that aren't necessarily needed, but this has broadened into a large practice of deciding what patients should get.
DAVIES: It's interesting that you have a story in which you note that anyone who is having a dispute with their insurance company about a claim - payment for a claim could get actually internal information from the company about its deliberations, including, you know, memos, emails, maybe even phone recordings. How do they do this?
ARMSTRONG: Well, you have a right to get that information. You can write to your insurance company to get it. We have on our website an aid for people to draft letters seeking your claim records. You know, one of the things we found when we were looking into insurance denials is that very few people ever challenge a denial. It's a small, small, small percentage - a single-digit percentage. But when people do challenge them, they're often successful, you know, as much as half the time. So if you have been denied prior authorization for something or if a claim came in and it was denied, it's worth the efforts, especially if it's a significant amount of money, to challenge it. It's well worth the effort if it's an amount of money that makes a difference to you.
DAVIES: When you were reporting the story about Revlimid, you know, you're doing this research, which you've done so many times, and you're also dealing with the effects of your own illness, the multiple myeloma. I wonder, did you or any of your editors have a concern that this might compromise your objectivity or offer an opening for critics to challenge your reporting?
ARMSTRONG: I think that's a fair question. And the way that we thought was best to deal with that was to be transparent. You know, I have this disease. I am a patient on this drug. I could at some point be financially impacted, you know, depending on my insurance, which, as I mentioned, has changed several times. So we thought it was important to let people know. And when I sought to interview people, I would tell them, I'm a patient. I take the drug. And then people can, you know, make their own conclusions about, you know, what motivates me. I will say that being a patient changed my perspective.
And before I even started on this story, I wondered, is it worth doing? Because for me, this is working. You know, I don't have to pay much. You know, why write about it if these high prices mean I get an effective drug? But ultimately, I came down on the side of this doesn't work for everybody and that there's so much more research and discoveries that need to happen. And we need money for that. And a lot of money is going to things like stock buybacks and executive pay and just to the bottom line. And I'm not saying that they shouldn't make a profit. They have a good drug. They should make a profit, but it was such an extraordinary amount that could have been directed to other resources that help patients in the long run.
DAVIES: Well, David Armstrong, good luck with your treatment, and thanks for your reporting, and thanks for speaking with us.
ARMSTRONG: Well, thanks for having me. I enjoyed it.
DAVIES: David Armstrong is a senior reporter for ProPublica. His new story about the high cost of the cancer drug Revlimid is "The Price Of Remission." We recorded our interview Monday. Coming up, David Bianculli reviews a new documentary about the remarkable life of singer-songwriter Janis Ian, whose career dates back to her early teens. This is FRESH AIR.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.