The insanity of American health care prices played out in this one, real oncology appointment

The oncologist had prescribed Xgeva hoping it would strengthen her bones while also delaying the progression of Angela Kahn’s breast cancer. But Kahn (a pseudonym) couldn’t get over the price of the drug. Before the oncologist had a chance to ask how she was feeling, she blurted out that the medication cost “$15,000 a shot.” “That’s crazy,” the oncologist replied, continuing by saying the price “fits right in with the rest of the insanity” of U.S. health care pricing. At that price, Kahn concluded, “I don’t think I should get it.”

The oncologist assured her “You’re getting it,” and they both laughed.

Not that either thought Xgeva’s price was a laughing matter. In fact, like many medications, Xgeva costs much more in the U.S. than in any other developed countries, with a single injection costing more than $2,000.

There’s too many reasons for these high prices to delve into them in the space of a short essay. Instead, I want to show how the insanity of American health care prices played out in this one, real oncology appointment. (Note: The appointment was recorded by a marketing company, Verilogue Inc., with the permission of the doctor and patient. I gained access to an anonymized transcript of the appointment for a research project approved by the Duke University IRB.)

After assuring Kahn that she’d remain on the Xgeva, her oncologist explained how he believes health care pricing plays out in the U.S. “It’s totally outrageous. What usually happens is the hospital or the clinic will charge 300 times what they think they can get, and the insurance company pays 1/20th of the original.”

“Oh, OK,” Kahn replied, with a touch of confusion.

“So it’s just a game, it’s a totally horrible game,” the oncologist continued. “That’s crazy,” Kahn reiterated.

The oncologist tried out an analogy: “It’d be like going to your car mechanic and them saying ‘Well I think it’s going to be $17,000 to get this fixed,’ and you say ‘Well how about $149?’”

Both Kahn and her doctor were laughing at this point. But Kahn’s oncologist wasn’t done expanding on the topic. He’d eventually get to Kahn’s medical situation. But in the meantime, he felt compelled to explain why he prescribed Xgeva despite its price: “It’s just gotten so out of control. Fortunately, I’m very sequestered from all these details. I usually have no idea [what things cost] unless patients come in and say.”

“Well, I saw the bill,” Kahn continued, “and I said to my sister, ‘You know, in good conscience, how can I spend that kind of money?’ and she said, ‘Just shut up. How many years did you pay insurance? And you went to a doctor once a year.’” Kahn wasn’t considering forgoing Xgeva because of her own out-of-pocket costs, but simply at the horror of spending anyone’s money on such an expensive medicine. It just didn’t seem right. But her sister was trying to remind her of how much money she had spent on insurance over the years without receiving much medical care in return.

At this point, the oncologist chimed in, with more reasons why Kahn should take the drug: “The insurance companies are making so much money right now, they can’t even explain themselves to Congress. And they’re getting called to Congress to explain their profit. They’re outrageous. They’re making more money than they ever have.”

“So don’t feel bad?” Kahn asked. The oncologist replied by telling her, “They are denying more and more and more and more, while they’re making more and more and more and more. It’s just aggravating. A lot of those CEOs . . . United Healthcare, I think he made $124 million last year.”

“Oh gosh, wow,” her daughter, who was also present at the appointment, replied.

At that point, the oncologist returned to the business at hand, of discussing Kahn’s treatment options. “I’ll be right back and see if we can get the wheels rolling to get the Faslodex today.” Then, assessing his own words, the oncologist remembered: “And sometimes insurance authorization can get in the way of that. Otherwise, I’m sure we could do it.”

Kahn’s cancer treatments weren’t stalled by the high price of Xgeva, or presumably the insurance company blocking more use of the Faslodex. But her faith in the U.S. health care system appears to have been undermined. Her oncologist seemed bitter about the private insurance companies he saw as benefiting from all the money passing back and forth between their customers and health care providers.

I’m not telling this story to sort out who’s making too much or too little money in the U.S. health care system, nor to debate whether the price of oncology treatments is too high.

Instead, I’m trying to draw attention to an overlooked cost of our inscrutably expensive health care system. Patients and providers are losing trust—in pharmaceutical companies and in third-party payers. Probably in the whole system. Other outpatient clinic interactions I’ve studied reveal doctors and patients complaining about the complexities of Medicare and Medicaid, or about the greediness of HMOs or local hospital systems. All these complaints, all these concerns, draw doctors and patients away from the reasons they find themselves together in an exam room—to identify and address patients’ health problems.

Patients pay a price for the inexplicably high cost of U.S. health care, not just in the size of their monthly insurance premiums or the expense of their copays and deductibles. They also experience the harm of losing trust in our nation’s health care system.