“God Help You. You're on Dialysis.”

Every year, more than 100,000 Americans start dialysis. One in four of them will die within 12 months—a fatality rate that is one of the worst in the industrialized world. Oh, and dialysis arguably costs more here than anywhere else. Although taxpayers cover most of the bill, the government has kept confidential clinic data that could help patients make better decisions. How did our first foray into near-universal coverage, begun four decades ago with such great hope, turn out this way? And what lessons does it hold for the future of health-care reform?
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“I Don’t Have Nowhere Else to Go”

Even as government policies have encouraged the spread of corporate dialysis, they have largely denied consumers the chance to use market power to push for better care.

Because Medicare is the dominant payer, it has information about dialysis centers that doesn’t exist for other medical providers. Yet the Centers for Medicare and Medicaid Services has not made public key measures such as clinics’ rates of mortality, hospitalization for infection, and transplantation. Regulators know how dialysis units perform by these yardsticks. So far, patients don’t.

Mark Schlesinger, a professor at the Yale School of Public Health, says the program has squandered an opportunity to be a model of patient empowerment. “In some ways, [dialysis] is where Medicare has the biggest footprint, but it’s always been kind of a backwater,” he said. “There’s a perception that these patients won’t take advantage of the opportunities.” Officials at CMS say they are considering whether to release more data about outcomes, which are collected at taxpayer expense. [Shortly after this article went to press, CMS agreed to release to ProPublica reports for all clinics from 2002 to 2010. ProPublica is reviewing the data and plans to make it publicly available.] Ostensibly, the reason for withholding them is that some of the data are disputed or lack refinement. Regulators and providers can put the data in perspective, the argument goes, but patients might misinterpret the information or see it as more than they really want to know. CMS’s Dialysis Facility Compare Web site posts a handful of measures, including one for mortality, but does not give hard numbers; instead, it categorizes patient-survival rates as “better than expected,” “worse than expected,” or “as expected.” “Mortality is hard for individuals to face,” said Thomas Dudley, who oversees Dialysis Facility Compare. “You don’t want to scare people away.”

Peckham, the patient-advocacy blogger, scoffed at this. “It infantilizes people to say, ‘We don’t want to burden you with information and facts,’” he said.

Would more information make a difference? I asked CMS for clinic-specific outcome data two years ago; as of press time, the agency has neither provided it nor determined whether it will. But I was able to obtain some material, including 2007–09 data for Texas, that shows striking differences between clinics in close proximity.

Innovative Renal Care and Midtown Kidney Center, clinics about two miles apart in Houston, had similar stats on Dialysis Facility Compare in 2007, including “as expected” survival rates. But the full data show that Innovative Renal’s average annual death rate—after factoring in patient demographics and complicating conditions—was 34 percent higher than expected. Midtown’s average rate was 15 percent lower than expected. Dialysis Facility Compare has since changed Innovative’s survival rating to “worse than expected,” but how much worse? The unpublished 2009 data reveal that the clinic performed more poorly, versus expectations, than 92 percent of all facilities nationwide. Innovative Renal’s administrator, Scott Sullivan, said the clinic had a difficult patient pool, but its most recent results have shown improvement. “We’ve put things in place to make sure those numbers are corrected,” he said.

The information void feeds patients’ general sense of powerlessness. Even activists such as Peckham or Lori Hartwell, who heads up the Renal Support Network, a patient-advocacy group, say they often feel shut out of the biggest decisions affecting the dialysis system. As a group, those on dialysis have been less vocal and effective than other patient communities in pressing a cohesive agenda. Kidney failure is almost four times as common among African Americans as among whites, and about one and a half times as common among Hispanics as among non-Hispanics. About half of the kidney program’s beneficiaries are poor enough to qualify for Medicaid. Dialysis itself can leave many patients saddled with cramps, congestion, and a sapping exhaustion. “You’re a pile of mush that’s barely getting through,” said Cindy Miller, a former patient in Las Vegas who got a transplant. “What do you want to do, file a class action? How many of these people are going to be alive long enough for that?”

When patients do take on the system, they can pay a heavy price. Larry Hall came home the evening of November 15, 2007, to find the equivalent of a “Dear John” letter from an attorney representing DaVita, his dialysis provider. “Effective immediately,” it said, “you will no longer be treated” at Southeastern Dialysis of Wilmington, North Carolina, where he had been a patient for more than nine years. Enclosed “to aid you in finding a new treatment facility,” the attorney wrote, was a list of non-DaVita facilities. The closest one was 50 miles away, in South Carolina.

Hall had been dumped, or, in Medicare-ese, “involuntarily discharged.” A burly, soft-spoken man who spent almost two decades as a uranium processor for General Electric, Hall, 51, was a hyper-vigilant patient who sometimes challenged clinic managers. Starting in early 2006, they pressed Hall to sign a contract that labeled him disruptive and required him not to “hand out anti-DaVita or anti-dialysis literature on the premises.” Hall refused to sign, and sued for negligence. The discharge letter arrived a few months later.

A DaVita spokesman said in an e-mail that the company did nothing improper, and blamed the discharge on Hall’s “escalating disruption and behavioral issues.” The clinic continued treating Hall even after he sued, the spokesman said, adding that while Hall later won a $10,000 jury award for one claim, several others were dropped.

Hall was forced to seek treatment at the emergency room of a nearby hospital, where he waited hours for stations to open up and for tests to show that his condition was dire enough to warrant intervention. Once—short of breath and swollen with 16 pounds of excess fluid—he was refused dialysis. Hospital workers put him in a wheelchair and left him in the lobby.

Regulators concluded that Southeastern Dialysis had violated Medicare regulations by dismissing Hall without advance notice. For now, Medicare officials have arranged for Hall to receive dialysis at the hospital. His treatments cost more than in-center care, and Hall worries the plug could be pulled at any time. “I don’t know what’s going to happen to me,” he said. “I don’t have nowhere else to go.”

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