Sudeep Taksali, an orthopedic surgeon, became worried that his 8-year-old daughter had already grown taller than his 12-year-old son. And sometimes she had an attitude that seemed more fitting for a teenager too. Something seemed wrong.
Taksali and his wife, Sara, realized their daughter had grown 7 inches in two years and she was showing signs of puberty. They took her to the doctor, who referred her to a pediatric endocrinologist for a work-up.
Eventually, their daughter was diagnosed with central precocious puberty. It's a rare condition that meant she would go through sexual development years earlier than her peers and would likely stop growing abnormally early too.
Taksali and his wife adopted the girl from India two years ago, and overall, she is adjusting well in their community just outside Portland, Ore.
She's a bright, avid reader who loves to do kettlebell workouts with her dad and Zumba with her mom. Still, she has moved across the world and learned a new language. And, he notes, she is a child of color in their mostly white community just outside Portland.
"Having one more thing for her to deal with ... where there might be maybe some negative attention drawn to her changing body," Taksali says. "That was one of my big concerns."
On the advice of their daughter's doctors, the Taksalis decided to put her early puberty on hold. The recommended treatment is a product commonly known as a hormone blocker. Implanted beneath the skin in her arm, it releases a little bit of a drug each day that increases the body's production of some hormones while it decreases others. The result is the child's progression toward adulthood slows.
The doctors told them there were two nearly identical drug implants — each containing 50 mg of histrelin acetate — made by the same company, Endo Pharmaceuticals, an American drugmaker domiciled in Ireland. But one was considerably cheaper.
Taksali wanted his daughter to get the less expensive option, but his insurer said it would cover only the more expensive option. Resigned, he asked the hospital how much it would charge for the expensive drug he had been hoping to avoid.
Then the estimated bill came.
The patient: Sudeep Taksali's daughter, 8, whom NPR is not naming to protect her medical privacy. She is insured through her father's high-deductible UnitedHealthcare plan.
Total estimated bill: The hospital told Taksali that the insurer wouldn't cover the cheaper version of the drug, Vantas. After that, he spent hours trying to get an estimated bill before the implantation. Supprelin LA would cost around $95,000, plus the cost of implantation, the hospital's billing department told him. Under his health plan, he has a $5,000 deductible and 20% coinsurance, so he was worried how much he might owe.
Service provider: OHSU Hospital in Portland, Ore., part of Oregon Health & Science University.
Medical procedure: implantation of a drug-delivery device containing 50 mg of histrelin acetate, to stave off early puberty.
What gives: Supprelin LA was approved by the Food and Drug Administration in 2007 for central precocious puberty and has a list price of $37,300, according to pricing data from ConnectureDRX. Vantas was approved by the FDA in 2004 for late-stage prostate cancer and has a list price of $4,400. Doctors are allowed to prescribe medicines for treatments that haven't been approved by the FDA, something called off-label use.
The main difference between the two medicines is that Supprelin LA releases 65 micrograms of the drug a day and Vantas releases 50 micrograms a day. Each implant lasts about a year.
The 15-microgram reduction in daily dose with Vantas is less than the weight of an eyelash, and the doctors who recommended the treatment said it doesn't make a clinical difference for children with central precocious puberty.
The much higher price for the children's version of the drug grated on Taksali, whose surgery practice is in Salem, Ore. "From a parent standpoint, as a physician, as a consumer, it feels abusive," he says.
"There's 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 themselves or their family, for their children's physical well-being."
Why did the FDA essentially approve the same drug twice? FDA spokeswoman Brittney Manchester said by email, "Generally, it is the sponsor's decision." The sponsor is the drugmaker, Endo.
Indeed, other drugmakers have sought approval for a single chemical compound as two different drugs. For example, Pfizer makes two versions of sildenafil citrate: Viagra for erectile dysfunction and Revatio for pulmonary arterial hypertension.
When we asked Endo Pharmaceuticals why Supprelin LA and Vantas had such different price tags, the company said the implants aren't identical and treat very different conditions. It didn't respond to questions about why that meant the prices should be different and whether it was somehow more expensive to manufacture one than the other.
Taksali spent more than a month trying to make sure his daughter could use the cheaper drug, and finally, the week his daughter was scheduled to have the procedure, it was approved. The hospital submitted the request again, and UnitedHealthcare said it would cover it.
"Our coverage policies are aligned with FDA regulations and Vantas is not FDA approved to treat Central Precocious Puberty," said UnitedHealthcare spokeswoman Tracey Lempner in an email. "In this specific case, when the provider expressed concern over the cost of Supprelin LA, we worked with them to allow for coverage of Vantas."
Taksali's daughter got the Vantas implant in late January.
When he got a breakdown of charges afterward, it listed $608 for the implantation and $12,598.47 for Vantas — about three times its list price.
"The price indicated on a patient statement often does not reflect what OHSU or any other hospital is paid for providing medical care, and in most cases, it doesn't reflect the amount the patient will be responsible for paying," said OHSU spokesperson Tracy Brawley.
According to his explanation of benefits, Taksali will owe, after insurance, $4,698.45 — most of his high deductible. Because it is early in the year, the family had not spent any of its 2020 deductible yet.
"One of the most mind-blowing things about this whole story is I probably will end up spending a very similar amount of money based on my insurance between Vantas and Supprelin," he said.
Taksali said he fought for the lower-cost drug on principle.
"Even if it is the insurance company's money, it's still somebody's money," he said. "We are still contributing to those premium dollars."
For now, it is unclear how much, if anything, UnitedHealthcare will pay toward the drug. Taksali seems to owe a little more than the list price of the drug.
"It will be interesting to see what happens," Merrit Quarum, the CEO of health care consulting firm WellRithms, wrote in an email. "Besides high charges, these types of systems and process problems add to the overall aggravations with healthcare payers and the patient continues to be caught in the middle with no advocate."
The takeaway: If you need an expensive drug, the first thing you should do is ask your doctor if there are cheaper alternatives. Sometimes, generics are available at a fraction of the cost. Other times, there are other cheaper brand-name options.
If you don't find out a drug is too expensive until you get to the pharmacy counter, you can also ask the pharmacist about less expensive options.
Patients, their families and health care providers can appeal these decisions, though it can be time consuming. For Taksali, using social media to direct-message UnitedHealthcare garnered prompt responses and some answers.
If there aren't other options, drug manufacturers often offer coupons to help patients with their copays. You can find some using GoodRx or visiting the drugmaker's website directly.
Kaiser Health News senior correspondent JoNel Aleccia contributed reporting.
Bill of the Month is a crowdsourced investigation by Kaiser Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
NOEL KING, HOST:
NPR and Kaiser Health News have been looking over your medical bills each month, and we've seen some pretty outrageous charges. You might remember the $28,000 throat swab that we told you about. NPR's pharmaceuticals correspondent, Sydney Lupkin, is here to talk about the latest. Hey, Sydney. How are you?
SYDNEY LUPKIN, BYLINE: Hi, Noel.
KING: So what's going on this month?
LUPKIN: Well, this month involves a young girl who needed a very expensive medication, but doctors told her father there was a cheaper drug that was almost exactly the same.
KING: That sounds great. Cheaper drug, cheaper option is good.
LUPKIN: Well, it would be. But the insurance company told the hospital it wouldn't cover the cheaper drug. And the more expensive one was going to cost a lot more.
KING: But for the same medication.
LUPKIN: Virtually the same. They are two nearly identical drugs made by the same company. But they are tens of thousands of dollars apart in price. So I went to Portland, Ore., to meet this family and find out more.
(SOUNDBITE OF KNOCKING ON DOOR)
SUDEEP TAKSALI: Hello. Hi.
LUPKIN: I'm Sydney. Nice to meet you.
TAKSALI: Hi, Sydney. Nice to meet you. Welcome.
LUPKIN: This is Sudeep Taksali, an orthopedic surgeon. He's also a dad.
TAKSALI: We adopted our daughter about two years ago from India.
LUPKIN: And you adopted her when she was how old?
TAKSALI: She was 6 when we got her.
LUPKIN: She's 8 now and a big reader.
UNIDENTIFIED CHILD: Six.
LUPKIN: Six? Six books that you're reading?
UNIDENTIFIED CHILD: Yeah. Three here and three at school. This one is about Ramona, who's kind of crazy.
LUPKIN: We're not naming her to protect her medical privacy.
TAKSALI: What other books are you reading?
UNIDENTIFIED CHILD: "Dear Napoleon, I Know You're Dead, But..."
TAKSALI: That's an interesting title. What's that book about?
UNIDENTIFIED CHILD: It's about a boy named Marnie.
TAKSALI: I would've thought it was about a boy named Napoleon.
UNIDENTIFIED CHILD: He's dead.
LUPKIN: Over this past summer, her parents noticed that she had gotten very tall for her age - taller than their 12-year-old son. Doctors eventually diagnosed her with a rare condition, central precocious puberty. It meant that she would go through sexual development much earlier than her peers.
TAKSALI: The poor girl's, like, been through a lot - all these transitions and adjusting to a new country, new language, new family, of course.
LUPKIN: They didn't want early puberty to be one more obstacle for her. Doctors told them there is a way to pause her puberty. It's a little implant that goes under the skin in her arm and releases a drug called histrelin acetate. It's a hormone blocker. There are two versions made by the same company, Endo Pharmaceuticals. One is called Supprelin LA. It was approved for central precocious puberty. And the company charges hospitals about $37,000 for it. It lasts for a year or two. The other is called Vantas, and it was approved to treat prostate cancer. Endo priced this one at about 4 1/2 thousand dollars.
TAKSALI: They're the same drug made by the same pharmaceutical company with a very trivial difference in dosing.
LUPKIN: The Taksalis' insurance, UnitedHealthcare, would only cover the expensive one, Supprelin. Sudeep wanted to know what that was going to cost them because hospitals add markups. He wasn't expecting what someone finally told him - $95,000.
TAKSALI: I was scared when I heard that number, and I was angry about this disparity.
KING: So what did you find out about the extreme disparity in cost? Why does one of these drugs cost so much more than the other when they're basically the same thing?
LUPKIN: So I asked Endo Pharmaceuticals, which makes both of these drugs, that exact question. And I didn't come away feeling like I understood why they priced the drugs so differently. 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 one was somehow more expensive to manufacture, they didn't answer. They just sort of stressed that these are not identical. And that's true. There is a tiny dosing difference. It's 15 micrograms, which is less than the weight of an eyelash. But I talked to several doctors who say that, clinically, it doesn't really make a difference for children who have this condition.
KING: So why did the Taksalis' health care company, UnitedHealthcare, say no to the cheaper option?
LUPKIN: So their policy is not to cover Vantas for this early puberty condition because it isn't approved by the FDA for that. Remember, Vantas is only approved to treat prostate cancer. So I asked the FDA, why was this drug approved as two distinct products when they're so similar? And they said it was up to the company to submit the application the way that they wanted to.
KING: So what ended up happening to Sudeep and his daughter?
LUPKIN: So a few days before the procedure, Sudeep told the hospital that a reporter was looking into this. Our partners at Kaiser Health News had called them. Soon after, the hospital submitted its request for Vantas again, this time citing cost as an issue. And it was approved. Then she got the implant. Here's her dad again.
TAKSALI: 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.
KING: Oh, my goodness. So how much are her parents going to end up paying?
LUPKIN: They got one of those explanation of benefits, which are sort of like a pre bill that your insurance company sends you. That's an estimate of how much you might be on the hook for. And the hospital still charged triple the price for Vantas. It came in at more than $12,000 dollars and Sudeep was responsible for about $4,700 of that after insurance.
KING: OK, so it could've been worse, but it's still a lot of money.
LUPKIN: The irony is all this hard work to get the drug switched probably won't wind up saving him that much money because he had a high-deductible plan. He did sort of a back-of-the-envelope calculation to try to figure it all out.
TAKSALI: To me one of the most mind-blowing things about this whole story - UnitedHealthcare saved approximately $45,000 from all these efforts. And I may save a couple hundred bucks.
KING: OK, so let me ask you what we always ask in these segments. If this happens to someone out there listening, what should they do?
LUPKIN: If you get prescribed a really expensive drug. The first thing you can do is ask questions. Ask your doctor. Ask your pharmacist. Are there cheaper options? You can also do a little online sleuthing - GoodRx and drugs.com can help you compare costs. If you get an insurance denial, you can appeal it, though it is tricky. Sudeep said he got the fastest, most consistent responses by direct messaging UnitedHealthcare on Twitter, even though he's not really a Twitter celebrity. He has fewer than 100 followers. And you can, of course, always negotiate even after you get your bill.
KING: Thank you, Sydney.
LUPKIN: You bet.
KING: Sydney Lupkin is NPR's pharmaceuticals correspondent. And remember, folks, if you have a surprising or unexpected or outrageous medical bill that you want us to take a look at, go to NPR's Shots blog and tell us all about it.
(SOUNDBITE OF E-VAX'S "THE MULE") Transcript provided by NPR, Copyright NPR.