In October 1972, after a month of deliberation, Congress launched the nation's most ambitious experiment in universal health care: a change to the Social Security Act that granted comprehensive coverage under Medicare to virtually anyone diagnosed with kidney failure, regardless of age or income.
It was a supremely hopeful moment. Although the technology to keep kidney patients alive through dialysis had arrived, it was still unattainable for all but a lucky few. At one hospital, a death panel—or "God committee" in the parlance of the time—was deciding who got it and who didn't. The new program would help about 11,000 Americans for starters, and for a modest initial price tag of $135 million, would cover not only their dialysis and transplants, but all of their medical needs. Some consider it the closest that the United States has come to socialized medicine.
Now, almost four decades later, a program once envisioned as a model for a national health-care system has evolved into a hulking monster. Taxpayers spend more than $20 billion a year to care for those on dialysis—about $77,000 per patient, more, by some accounts, than any other nation. Yet the United States continues to have one of the industrialized world's highest mortality rates for dialysis care. Even taking into account differences in patient characteristics, studies suggest that if our system performed as well as Italy's, or France's, or Japan's, thousands fewer kidney patients would die each year.
In a country that regularly boasts about its superior medical system, such results might be cause for outrage. But although dialysis is a lifeline for almost 400,000 Americans, few outside this insular world have probed why a program with such compassionate aims produces such troubling outcomes. Even during a fervid national debate over health care, the state of dialysis garnered little public attention.
Over the course of more than a year, I reviewed thousands of inspection reports and interviewed more than 100 patients, advocates, doctors, policy makers, researchers, and industry experts to get a grasp on American dialysis care. The findings were bleak: at clinics from coast to coast, patients commonly receive treatment in settings that are unsanitary and prone to perilous lapses in care. Regulators have few tools and little will to enforce quality standards. Industry consolidation has left patients with fewer choices of provider. The government withholds critical data about clinics' performance from patients, the very people who need it most. Meanwhile, the two corporate chains that dominate the dialysis-care system are consistently profitable, together making about $2 billion in operating profits a year.
One reason that dialysis's problems have evolved out of the health-care spotlight is that kidney failure disproportionately afflicts minorities and the dispossessed. But given a patient pool growing by 3 percent a year and the outsize 6 percent bite that the kidney program takes from the Medicare budget, we ignore dialysis at our own risk. "We're offering our patients a therapy we wouldn't accept for ourselves," said Dr. Tom F. Parker, a Dallas nephrologist and national advocate for better care. More and more leaders in the field, he told me, "are starting to say this isn't sufficient."
As the United States moves to expand access to health care, dialysis offers potent lessons. Its story expresses the fears of both ends of the ideological spectrum about what can happen when the doors to care are thrown wide open: neither government controls nor market forces have kept costs from ballooning or ensured the highest-quality care. Almost every key assumption about how the program would unfold has proved wrong.
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