Short Wave - A Tale Of Two (Very Different) Drug Prices

Episode Date: March 2, 2020

NPR Pharmaceuticals Correspondent Sydney Lupkin joins us to talk about a dad who learned his daughter needed an expensive drug — but there was a nearly identical one that was thousands of dollars cheaper. It's part of NPR's Bill of the Month series, which is done in partnership with Kaiser Health News. Follow Emily and Sydney on Twitter. They're @EmilyKwong1234 and @slupkin. Email the show at [e-mail] pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. Hey, everybody. Emily Kwong here with Sydney Lupkin, NPR's Pharmaceuticals correspondent. Hey. Hey there. Okay, so you have this outrageous story to share about drug pricing. Yes, it is part of our Bill of the Month series in partnership with Kaiser Health News. And it's about one family, but it tells a bigger story about how difficult it is to navigate our health care system. I went out with my producer, Jane Greenlee.

Hulch to visit Sadiq Taksali in Oregon. Hello. Hi. I'm Sydney. Nice to meet you. Hi, Sydney. I'm nice to meet you. Welcome. Okay, so what brought you and Jane to Sudeep's doorstep? Well, Sudeep has a daughter. We adopted our daughter about two years ago from India. Who we're not going to name for the sake of protecting her medical privacy.

And you adopted her when she was how old. She was six when we got her. And she's eight years old now, but... Last summer, we noticed that she, was starting to show more puberty-like changes. Like, her parents noticed she was getting really tall for her age, taller than their 12-year-old son. Over the course of these couple of years, we've noticed that she's grown tremendously, like not just emotionally and socially, but physically she grew quite a bit.

I think she's like maybe seven inches taller. Wow, at eight years old? Yeah, so they took her to her doctor, and her doctor ended up referring them to to a specialist. The condition that she was eventually diagnosed with is called central precocious puberty. Together with her doctors, they decided she didn't need one more obstacle in her life. Going through puberty with all of your friends, your friends, is hard and awkward enough, right? Yeah, and I couldn't imagine going through it that young. Yeah. The poor girls like been through a lot, all these transitions and adjusting to a new country, new language, new family, of course.

So they decided to use a pharmaceutical implant to basically hit the pause button on her puberty. There are two options. They're both made by the same company and chemically, they're the same drug. Both cost thousands of dollars. But as Sudeep found out, one was over eight times more expensive than the other. So same drug, but big price difference. Right. But the frustrating part for the Tuxalis is that their insurance, United Healthcare, would only cover the more expensive one.

How much more expensive are we talking? He eventually found out that with the hospital's markup, it would be $95,000. Holy moly, that is a terrifying number. Yeah, again, that's with the hospital's markup. Sudeep's an orthopedic surgeon, so he's used to hospitals adding markups to pay for their own operation, emergency care, for people who can't afford to pay, etc. Sure. But he couldn't shake this knowledge that there was a near-identical option out there that was so much

cheaper, but was just out of reach. It feels abusive. I mean, it really feels abusive. Today on the show, the confusing world of drug pricing and how two drugs that are virtually the same ended up being so wildly different in price. Okay, Sydney, so you mentioned that Sudeep Tuxali basically has two options to treat his daughter's condition of central precocious puberty. What does that treatment look like?

You can basically put a pause on puberty with just a little implant that goes under the skin in your arm, the implant releases a drug called histrelin acetate each day. Right. It's an implant designed to block hormones. More or less, it increases some to block others, so it effectively is just putting her puberty on hold. And as we said, there are two versions of this implant made by the same company, endo-pharmaceuticals. Suprelin, L.A., which the FDA has approved to treat central precocious puberty, and that's the one that Sudeep's insurance covers. That has a list price. of $37,000, and then the hospital marks it up to $95,000.

Right. And the cheaper drug is called Vantus. It has a list price of around $4,000, and it was approved specifically to treat prostate cancer. That distinction becomes more important in a minute. Okay, so just so I have this right, Sudeep's insurance would only cover the more expensive one, the one listed at $37,000 versus $4,000. Yes. And that made Sadipe really mad.

They're the same drug made by the same pharmaceutical company with a very trivial difference in dosing. Yeah, I'm just having a hard time wrapping my brain around this because they're virtually the same drug and yet they're charging so much more for a little kid who just doesn't want her period at eight years old. Yeah, like I had a similar reaction. So I reached out to endopharmaceuticals, which makes both of these drugs basically ask them why they price them so differently. And they didn't really explain it or I didn't come away feeling like I understood. They just said it was approved as two different products to treat two different patient populations. When I followed up with Endo to ask whether maybe one was somehow more expensive to manufacture, they didn't answer. They just stressed that they're not identical. So what is the difference?

Well, there is a tiny dosing difference. 15 micrograms. That is about the weight of an eyelash. Yeah, that's itty-beddy. I did talk to several doctors in different parts of the country even to sort of ask about this, and they say that the dosing doesn't make a clinical difference for their patients. In fact, to them, the products were basically interchangeable. They wanted to use Vantis or they were already using it for their precocious puberty patients.

There's an incredible amount of vulnerability you have as a parent. So Sudeep was not happy with endosidicals. And to know that they're sort of a predation on, parents who have that sense of vulnerability who will do anything within their means to help their children and who will sacrifice for their children's physical well-being, mental well-being, in any way that they can help their children, I feel like they're exploiting that. So he feels like he's kind of being taken advantage of. Yeah, I bet. So why does the taxolese insurance only cover the more expensive version if they're so

similar. So their policy is not to cover Vantus for central prococious puberty patients because it wasn't approved by the FDA for that. Our friends the FDA. Our friends the FDA. Yeah. So Vantis was only approved to treat prostate cancer. So I asked the FDA, why didn't they just push for the one drug to be approved for multiple different conditions? One drug, multiple diseases. And the short answer is that it's up to the company how they want to submit their drugs for approval. So even though the FDA is the regulatory agency for all these drugs, they don't have the power to point out they're basically the same and then say, you have to charge it the same. The FDA actually can't say anything about price. I see. But you mentioned earlier that there were doctors using Vantas, the cheaper drug,

for this condition, central precocious puberty. What you're describing is an off-label use. That's when doctors prescribe a drug to treat a condition that the FDA hasn't specific approved it to treat. It's not on a label. Okay. So for Sedeep's daughter, the doctors at this hospital offered to do just that. And he said, great, let's do the cheaper one. That's Vantus. So the hospital requested it,

but his insurance, United Healthcare, said no. Ah. Hurdles. There's just so many hurdles in this story. Right. And you said earlier, this is all because Vantus is not FDA approved for treating precocious puberty. Yeah. And United Healthcare says it typically does stick with

what the FDA says. Okay. So it sounds like at this point, Sudeep was really, at this point, stuck between a rock and a hard place. Yeah. I mean, he spent the next month, assuming that he was going to have to pay for this expensive drug plus the hospital's markup. And he wanted to know how much he personally was going to be on the hook for. Top his daughter. Yeah. And at that point, he reached out to reporters to talk about this outrageous medical bill that he was facing. Ooh, he reached out to reporters. By the time I got involved, Sudeep had already been talking to Jonell Alicia, our reporting partner at Kaiser Health News.

And while Sudeep was on the phone with the hospital's billing department, Jonel called, and so I had this, you know, nice way of kind of breaking the conversation saying, sorry, I've got to go. The reporter's on the phone. And within about a day, the hospital requested Vantis again. And this time, it worked. It worked? Yeah. United Healthcare approved this request in this one case. So the health insurance company changed its mind? Why? So we don't 100% know why.

Do you think it's because of the reporting and the timing of all that? So the timing is interesting, but we really don't know for sure. What we do know is that when the hospital requested Vantus for a second time, it emphasized that it was because Vantus cost less, basically. And what's really important is that at the end of this entire process, Sudeep's daughter finally got the implant. which lasts about a year, and it should slow down her early puberty. The doctor wanted to talk to her about the implant and the procedure and puberty.

She brought up periods, and she's like, do you know what a period is? And she's like, yeah, it goes at the end of a sentence. Oh, little one. Life is hard when you're that young, I've got to say. So how much will Sudeep and his family be billed for this implant? We don't exactly know yet. He's gotten a kind of pre-b called an explanation of benefits or an EOB. These are basically an estimate of what patients might be on the hook for and they can change.

The total charge for the Vantus implant with that markup that we were talking about was going to be more than 12 grand. Okay. It's definitely less than the 95 grand you mentioned earlier. Right. And it looks like he'll be personally responsible. after insurance for about $4,700. So was it worth it in the end to fight for this cheaper implant? Like, did he save a ton of money from this? Well, the ironic part is that after all this work that he put in, he thinks he'll mostly wind up saving his insurance company a bunch of money.

To me, one of the most mind-blowing things about this whole story, United Health Care saved approximately $45,000 from all these efforts. That was his back of the envelope calculation for how much she was going to have to pay. And I may save a couple hundred bucks. Wow. Wow. Yeah, wow is right. Okay, wow. So after all this reporting, do you have any advice for our listeners who might go to the doctor's office in the future and get stuck with a super expensive drug prescription? Right. So if you get prescribed a drug that turns out to be really expensive, the first thing that you can do is just ask questions, Ask your doctor, ask your pharmacist.

Hey, guys, is there a cheaper drug option available to me? There are also online resources like GoodRX that can help you compare costs. If you do get a denial from your insurance company, you and your health care providers can work together and appeal it. And then finally, if you do get a really high bill, you can still negotiate after the fact. All right. Sydney Lubkin, Queen of Our Hearts, NPR's Fearless Pharmaceutical Correspondent, thank you so much for dropping by. having me. You've been listening to Shortwave from NPR. Today's episode was produced by Rebecca Ramirez with engineering help from Stacey Abbott. It was edited by Viet Le and fact-checked by

Burley McCoy. I'm Emily Kwong. See you next time.