“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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The Italian Solution

Reggio Calabria is not the sort of town where you’d expect to find world-beating health care. Dusty and poor, it sits on Italy’s southern tip, at the end of a notorious highway that cost so much and took so long to build, it became a national symbol of inefficiency and corruption. The city’s main public hospital has the tired grubbiness of a bus station. Its unit for kidney patients, however, typifies dialysis Italian-style.

Other countries provide universal access to dialysis care, much like the United States. But some, notably Italy, have better patient survival and cost control. Italy has one of the lowest mortality rates for dialysis care—about one in nine patients dies each year, compared with one in five here. Yet Italy spends about one-third less than we do per patient.

These results reflect lower overall health-care costs and a patient population with lower rates of diabetes and heart disease, but also important divergences in policy and practice. “The differences in mortality are staggering,” said Dr. Daniel Batlle, who is a professor at Northwestern University’s Feinberg School of Medicine and co-authored a 2009 paper on dialysis practices and outcomes in Italy.

As Dr. Carmine Zoccali, slim and white-haired, weaves through the 24-station outpatient unit in Reggio Calabria, patients recline on beds, chatting quietly or dozing. A doctor is present at every session, adjusting treatments and handling any complications. This is typical: a 2007 report showed that Italian dialysis patients had more than five times as much contact with their physicians as U.S. patients.

As he walks me through the ward, nurses move between the beds, monitoring patients’ vital signs and responding to the occasional bleat of a machine alarm. There are no patient-care technicians, Zoccali explains, and some regions set mandatory staffing minimums. His unit has at least one nurse for every 3.5 patients. Their expertise not only enhances safety, but also helps keep patients compliant with their treatment programs, Zoccali says.

Most of his patients get three treatments a week, but their sessions last at least four hours, more than the U.S. average. Extending dialysis by 30 minutes per session improves life expectancy, research shows, though many patients resist adding time. Zoccali speaks wistfully of a French clinic where patients get 12-hour treatments and have lower levels of hypertension than people with healthy kidneys. “The decision to make dialysis faster wasn’t a scientific decision, it was a managerial decision,” he says. “It’s to allow you to do four shifts a day and make money.” He schedules just two shifts a day, to accommodate longer treatment times.

Zoccali and other doctors credit much of their success to the Italian practice of sending patients to specialists earlier than in the United States. There are fewer financial barriers to such referrals. Those with less-advanced kidney disease have equal coverage; patients don’t need to have reached kidney failure. Intervening sooner “delays the need for dialysis and reduces the number of patients,” said Dr. Francesco Locatelli, who oversees the nephrology-and-dialysis program at the hospital in Lecco, near Milan.

Patients tend to start dialysis in better overall health, he said, and more than 80 percent have fistulas, the type of vascular access least vulnerable to infection and clotting. In the United States, fistulas have become more common, but most patients still start out with catheters, often because they need dialysis immediately and fistulas take time to mature.

The economics of dialysis are fundamentally different in Italy, where public hospitals still provide more than three-quarters of the care. Regional health authorities pay more per treatment than Medicare—roughly 50 percent more, the 2007 report found. But per-patient costs are lower because Italy’s indirect expenses, particularly for hospitalization, are smaller and because coverage includes drugs as well as dialysis. A 2004 study found that Italian patients got half the average dose of Epogen given to U.S. patients—perhaps because there’s no profit incentive to give them more.

Private operators have made inroads in Italy, especially where local health authorities have faced budget pressure. Areas with more private providers have so far had outstanding patient outcomes, but some practitioners think the statistics mask a more complex reality. “The private centers do the simple things, but when they have patients with complications, they send them to us,” said Dr. Giuseppe Remuzzi.

Remuzzi has presided over the dialysis unit in Bergamo, an industrial city northeast of Milan, for more than three decades. Poking his head into one treatment room, he introduces me to four patients, all seniors, who have been getting dialysis together for 17 years. To Remuzzi, their longevity is proof that Italy should resist the U.S. dialysis model. “If we use the same system you do,” he said, “our patients will start to have survival rates like yours.”

Breaking the Chain

Despite the deep flaws in the U.S. dialysis system—and the obvious ways that Washington could improve it—big changes don’t seem to be in the offing. Donald Berwick, the new administrator of Medicare and Medicaid, has not yet articulated his vision for the program, and health-care reform leaves it largely untouched. The Institute for Healthcare Improvement, which Berwick co-founded, has worked to promote the use of fistulas, but a project director, Carol Beasley, has concluded that a piecemeal approach to fixing dialysis won’t work. “It’s unsatisfying to tinker with one broken part of a broken system,” she said. Berwick, whom conservatives already accuse of supporting health-care rationing, may not have the capital to push a more holistic approach.

So far, he’s taken the step of endorsing the government’s move toward payment reform. Starting next year, Medicare will pay a combined rate—about $230 per session, subsequently indexed for inflation—for treatments, drugs, and other dialysis services, removing the incentive for clinics to overuse drugs. The end-stage-renal-disease program also will try for the first time to tie pay to performance: under a proposed rule that takes effect in 2012, clinics could lose as much as 2 percent of their Medicare payments if they fail to meet standards for anemia management and dialysis adequacy, as measured by patients’ blood tests.

Many industry experts doubt these changes will yield much. Several said the government is making a crucial mistake by rating performance by lab tests, not outcomes or measures that reflect patients’ quality of life. “Mortality, morbidity, and infection—that’s the bottom line,” said Joseph Atkins, the former clinic owner and consultant. “It’s easy to adjust the labs. What good is it if you have good numbers, but everyone’s dying or in the hospital?”

Increasingly, patients, doctors, and advocates say the way forward lies in focusing on alternative therapies, particularly those, such as home dialysis, that allow for longer and more frequent treatments. The biggest potential gains may rely on keeping people off dialysis in the first place. In that, the United States is falling miserably short. The incidence of kidney failure has increased by more than 80 percent since 1990; of the 40 countries that share data on this, only Taiwan and parts of Mexico have higher rates. “The centers are kind of the end of the line,” Beasley said of dialysis providers. “They could deliver perfect care, but you still would be dealing with this tidal wave of people” coming into treatment.

A potential bright spot in health-care reform, she said, is that extending better coverage to persistently under- or uninsured Americans could lead to earlier intervention for kidney disease. But as care expands and the national health-care debate staggers on, our four-decade experiment with dialysis is worth bearing in mind. All too often, patients get caught in a vise between bureaucracy and the bottom line. As dialysis shows, guaranteeing access can come at a steep price—in dollars and in lives.

An expanded version of this story is available from ProPublica.

Robin Fields is a senior editor at ProPublica, an independent, nonprofit newsroom in New York City that produces investigative journalism. Lisa Schwartz, a researcher at ProPublica, and Guido Romeo, a science writer in Milan, contributed to this report.
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