The Story of My 'Socialist Kidney'

Editor’s note: A version of this article first appeared on Salon. It has been edited and updated to reflect data from a new U.S. Renal Data Systems report released after the original version appeared.

In the wake of the Senate Finance Committee votes last week against including a public insurance option in health-care reform legislation, it remains to be seen whether any kind of robust public option will ever become a reality in the U.S. I wonder, though, if more of my fellow citizens had ever seen a public option, or “socialized medicine” up close, as I have, whether all Americans wouldn’t be clamoring for the exact same health security I enjoy today.

Last November, a doctor told me I’d inherited from my father a rare form of cystic kidney disease and that I was already in renal failure. Beyond the total devastation I felt upon hearing this news, and despite having health insurance, my greatest fear in those first, foggy days was one that haunts millions of Americans. I was more terrified of being dropped or denied treatment, over some miniscule technicality, than I was of facing the disease. I quickly learned, however, that my diagnosis qualified me for a little-known, existing “public option,” or government health insurance plan. The same program had saved my father’s life, but I was surprised to learn it still existed, despite numerous legislative changes through the decades.

End-stage renal disease is the only long-term, chronic disease classification for which the U.S. government provides insurance coverage, regardless of age or income, having once met Congress’s elusive standard for an unequivocal, moral imperative to provide public-financed health insurance. My family’s history with this disease mirrors exactly the period from 1973 to 2009, during which a government entitlement program has provided access to life-saving dialysis and kidney transplants, treatments previously denied to all but a very privileged few.

The story of the Medicare End-Stage Renal Disease (ESRD) program is illustrative of a government plan urging private insurers to cover more Americans than they ever did when induced solely by market forces or their own good intentions. In today’s political parlance, this translates to a public option “keeping private insurance honest.” This history also presents a cautionary tale of how profit-driven forces chipped away at Medicare ESRD’s effectiveness, resulting in higher treatment costs and worse patient outcomes (compared to other industrial nations) for the nearly 530,000 ESRD patients in the U.S. today.

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In the summer of 1972, my 30-year-old father, Wayne Nix, learned his kidneys were failing. As a high school teacher, with a wife and two little girls to support, his only two choices were death or financial ruin. Doctors at the University of Michigan Medical Center estimated he had six months to live without beginning hemodialysis—a process by which plastic blood lines are connected to the body via needles (usually in the arm), and blood is mechanically pumped out of the body, and circulated through an artificial kidney for three-to-four hours at a time, usually three days a week. Back then, dialysis costs ran between $10,000 and $15,000 a year.

On short-term disability leave from work, with no savings to speak of and a brand new mortgage on a $27,000 house, my father found himself in possession of an employer-provided medical insurance policy with a high deductible and a low lifetime cap on payments for health-care and prescription drugs. With hospital stays, doctor visits, medicines and dialysis costs, my parents quickly approached the dizzying precipice of bankruptcy. To help stem our financial hemorrhaging during those initial months, at my parents’ friends’ parties there would often be the benevolent and anonymous device known in 1970s-Midwest vernacular as the “money-tree”: a small tree branch set in a make-shift pot with ten- and twenty-dollar bills fastened with twist-ties, like so many leaves. Even as my father hoped for a transplant, though, he knew there would be no money to pay for it.