Dr. Josie Tenore and Paul Hinds were introduced by a mutual friend in 2017 and hadn't been going out long when she laid down the law: He had to get a physical.
"I don't date people who don't take care of their health," said Tenore, who practices cosmetic dermatology and functional medicine in suburban Chicago.
One of Hinds' blood tests that summer came back with an alarming result: His prostate-specific antigen, or PSA, level was very high. A biopsy confirmed he had advanced prostate cancer.
There aren't a lot of comfortable alternatives for treating prostate cancer, which generally progresses as long as testosterone levels remain high. Marijuana appears to lower testosterone levels, so after his diagnosis, Paul dosed a liquid form of cannabis for several weeks. That cut his PSA in half, but Hinds, a cybersecurity expert who likes yoga and bicycling, "was stoned out of his mind and couldn't function," Tenore recalled.
With Tenore guiding his decisions, Hinds next tried a procedure called high-frequency ultrasound treatment, but it failed, and in summer 2019 doctors removed his prostate gland. Still, the PSA levels climbed again, and doctors assessed that the cancer had metastasized. Now the only alternative was to drastically lower Hinds' testosterone levels — either via surgery or drugs that block all testosterone.
In May 2021, Paul got his first intramuscular shot of Lupron Depot, a brand name for leuprolide, designed to suppress the prostate gland's release of the hormone for three months. That August he got his second shot.
And then the bills came.
The Patient: Paul Hinds, now 60, is covered by United Healthcare through a COBRA plan from his former employer.
Medical Service: Two three-month Lupron Depot injections for metastatic prostate cancer.
Service Provider: University of Chicago Medicine, a 900-physician nonprofit system that includes an 811-bed medical center, a suburban hospital, the Pritzker School of Medicine, and outpatient clinics and physician offices throughout the Chicago area.
Total Bill: $73,812 for the two shots ($35,414 for the first, $38,398 for the second), including lab work and physician charges. United Healthcare's negotiated rate for the two shots plus associated fees was $27,568, of which the insurer paid $19,567. After more than a year of haggling with the hospital and insurer, Hinds share of the bills for the shots was determined to be nearly $7,000.
What Gives: The first issue is unrelenting price increases on old drugs that have remained branded, as manufacturers find ways to extend patents for decades and maintain sales through marketing.
Though Lupron was invented in 1973, its manufacturer got patent extensions in 1989 by offering a slow-release version. Drugmakers commonly use this tactic to extend their exclusive rights to sell a product.
The development of Lupron Depot as an intramuscular shot that suppressed testosterone for months at a time improved patient compliance and also enabled its maker, Abbott Laboratories, and its Japanese partner, Takeda, to extend their patents on the drug into the 2000s, said Dr. Gerald Weisberg, a former Abbott scientist who has been critical of the company's pricing policies.
In subsequent years, Abbott and Takeda, in a joint venture called TAP Pharmaceuticals, steadily marked up the price of their slow-release product. In 2000, the average wholesale U.S. price for a three-month shot was $1,245; currently that figure is $5,866. (It is manufactured in the U.S. by AbbVie now.)
In the United Kingdom, where health care is generally free and Takeda sells the drug under the name Prostap, all physicians can purchase a three-month dose for about $260.
It's likely that Chicago Medicine, where Hinds got his shots, paid something close to the British price. That's because the health system's hospital on Chicago's South Side participates in a federal program called 340B, which allows hospitals that serve low-income populations to purchase drugs at deep discounts.
Lupron Depot is given as a simple injection into the muscle. It takes minutes for a nurse or doctor to administer. Yet hospital systems like Chicago Medicine can and typically do charge lavishly for such services, to enhance revenue, said Morgan Henderson, principal data scientist at the Hilltop Institute at the University of Maryland, Baltimore County. Chicago Medicine declined to say what it paid for the drug.
While U.S. drugmakers can price their drugs however they please, TAP has gotten into trouble for its Lupron sales policies in the past. In 2001, after a Justice Department probe, it paid an $875 million settlement for illegally stimulating sales by giving urologists free and discounted vials of the drug while enabling them to charge Medicare full price.
Since then, many other drugs aimed at lowering testosterone levels have entered the market, including a pill, relugolix (Orgovyx). So why wouldn't a patient use them?
Lupron Depot is long-acting, is easy to prepare and store, and employs a small needle, which some patients prefer, said Dr. Brian McNeil, chief of urology at University Hospital of Brooklyn. Orgovyx is convenient, but "a patient has to be very compliant. They have to take it every day around the same time," he said. "Some people just forget."
But there is another important factor that may well explain Lupron Depot's ongoing popularity among medical providers: Doctors and hospitals can earn tens of thousands of dollars each visit by marking up its price and administration fees — as they did with Hinds. If they merely write a prescription for a drug that can be taken at home, they earn nothing.
Asked about this high patient charge and the possibility of using alternatives, United spokesperson Maria Gordon Shydlo said payment was "appropriately based on the hospital's contract and the member's benefit plan," adding that the insurer encourages customers to shop around for the best quality and price.
Resolution: In addition to leaving Hinds listless, the Lupron Depot shots were, literally, a pain in the rear end. "Each time he was miserable for two weeks," said Tenore. After looking over his first bill for the Lupron shot, Tenore told Hinds he should ask his doctor if there was a less expensive drug that was easier to take.
After the second shot in August 2021, a pharmacist told Hinds he could instead receive the pill. The doctor prescribed Hinds three months' worth of Orgovyx last November, for which he paid $216 and the insurer paid over $6,000. The drug's list price is about $2,700 a month. There is evidence that Orgovyx works a little better than leuprolide.
Orgovyx was a "no-brainer," Hinds said. "Why would you want a sore ass for two weeks when you can take a pill that kicks in sooner, functions the same way, and clears your body of testosterone faster?"
While Orgovyx is increasingly used for prostate cancer, Lupron and other injections usually remain the standard of care, said hospital spokesperson Ashley Heher. Clinicians "work with patients to determine what treatments are the most medically effective and, when necessary, to find reasonable alternatives that may be less financially burdensome due to insurance coverage limitations," she said.
Hinds was baffled by the size of the charges. During months of phone calls and emails, the hospital reversed and then reapplied part of the charge, and then in July agreed to a $666.34 monthly payment plan. After Hinds had made two payments, however, the hospital announced Aug. 29 it was canceling the agreement and sending the remainder of his bill to a collection agency. Two weeks later, the hospital reinstated the payment plan — after KHN asked about the cancellation.
As for Hinds, he remains active, though his bike rides have been shortened from 50 or 60 miles to about 30, he said.
He's grateful to have Tenore as a free consultant, and empathizes with those who lack a knowledgeable guide through their disease and health care's financial maze.
"I've got Dr. Josie as an advocate who knows the system," Hinds said.
The Takeaway: First tip: If you are prescribed an infusion or injection, ask your physician if there are cheaper oral medications to treat your condition. Also, many drugs that are given by injection — ones that are given "subcutaneously," rather than into a muscle — can be administered by a patient at home, avoiding hefty administration fees. Drugs like Dupixent for eczema fall into this category.
Keep in mind that where you get treatment could make a big difference in your charges: A study found that leading U.S. cancer centers charge enormous markups to private insurers for drug injections or infusions. Another study found that hospital systems charge an average of 86% more than private clinics for cancer drug infusions. And the percentage of cancer infusions done in hospital-operated clinics increased from 6% in 2004 to 43% in 2014, and has grown since.
Under a law that took effect in 2021, hospitals are required to list their charges, though they currently do so in a way that is not user friendly. But it's worth taking a look at the price list — the hospital chargemaster — to try to decipher the pricing and markup for your medicine. If you're about to get an injection, infusion, or procedure done in a hospital system, ask ahead of time for an estimate of what you will owe.
Dan Weissmann contributed the audio portrait with this story.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.