I was struck recently by two stories in the New York Times. The first, “Bishops Follow Pope’s Example: Opulence Is Out,” tells how bishop after bishop, either inspired by the Pope’s example or afraid of being shamed for not doing so, is moving out of his expensive, newly renovated residence and emulating Pope Francis’ emphasis on living simply. “Francis has very definitely sent out a signal, and the signal is that bishops should live like the people they pastor, and they shouldn’t be in palaces.”
I contrast this in my mind with the “do as I say, but not as I do” style of leadership shown by the US Congress on health care, where the message of “bending the cost curve on health care,” and limits on “Cadillac plans” was for everyone else. Congress’ own gold-plated plan remained in place, despite posturing to pretend that members of Congress were in the same boat as everyone else.
But when the leaders themselves don’t lead, sometimes individuals stand up to be counted.
One such example, buried in a much larger story about health care entitled, “Even Small Medical Advances Can Mean Big Jumps in Bills,” should have been front page news with this headline: “Health care heroism: patient refuses outrageously expensive treatment.” Here is the key passage from the article:
“In the United States, each patient with a chronic disease must make the cost-benefit analysis of each new high-priced treatment, weighing symptoms, disposable income and insurance coverage. They are often wrenching decisions….
“For Jeffrey Kivi, 51, a chemistry teacher at Stuyvesant High School in New York, it meant recently giving up an intravenous drug that, as an outpatient, he had had infused every six weeks for years to keep his psoriatic arthritis at bay. Before taking that drug, Remicade, Dr. Kivi was on high doses of steroids for debilitating joint pain that left him unable to walk at times.
“But when his last three-hour infusion at NYU Langone Medical Center’s outpatient clinic generated a bill of $133,000 — and his insurer paid $99,593 — Dr. Kivi was so outraged that he decided to risk switching to another drug that he could inject by himself at home. That is true even though his insurer did not require him to make up the difference.
“‘I cannot, in good conscience, continue to force my insurance company to pay $100,000 to NYU each time I get a Remicade infusion.’ Dr. Kivi, who was a drug company researcher for many years, wrote to the hospital. ‘That’s insane.’
“In a statement, Lisa Greiner, a spokeswoman for the medical center, said Dr. Kivi’s charge had been high relative to that of other patients because he had been prescribed a high dose of the drug.
“He had moved his care to NYU Langone to follow his longtime doctor, who had moved her practice from a nearby hospital where the same infusion had been billed at $19,000. The average price that hospitals paid for Dr. Kivi’s dose of Remicade late last year was about $1,200, according to Medicare data.”
Like Pope Francis, Jeffrey Kivi stood up and said, “This is wrong.” We need to celebrate people like him — and shame institutions like NYU, which charge such outrageous prices, so far out of line with industry norms, just because they can. The market power of large hospitals is turning out to be one of the key drivers of health care costs. But “with great power comes great responsibility.” Hospitals that overcharge the insurance system just because they can are increasingly turning out to be the villains of our health care system. They need to be shamed and pressured by their customers, just like the Catholic bishops have been shamed by their parishioners.
Fortunately, there is a movement toward increased transparency in health care costs, enabled in part by open data policies at the Center for Medicare Services, which is now releasing physician-level cost data. This is leading to an increasing number of services that make the system less opaque. But that only matters if people use the data.
Sites like clearhealthcosts.com let you compare prices for various medical procedures in your area. (Fred Trotter, author of the O’Reilly book Hacking Healthcare, has built another such system, the DocGraph.) These sites have been mainly targeted to those who are uninsured or who have high deductibles, but if we really want to drive down the cost of care, we need to use these tools whether insurance is paying the bill or not. When an institution is charging outrageous prices, we need to stand up, like Jeffrey Kivi did, and say, “That’s insane.”