OPINION:
For nearly four years, I have spent every night connected to a dialysis machine. It is a reality shared by more than 800,000 Americans living with end-stage renal disease, the final and irreversible stage of chronic kidney disease.
My mother died from kidney failure when I was 16, after years on dialysis. Because of that history, I told every doctor I saw about my risk. I asked questions. I paid attention.
Still, no one told me my kidneys were failing. No one shared my glomerular filtration rate, the basic measure of kidney function, until it was almost too late to slow the disease.
That is the failure we must confront. About 35 million Americans have chronic kidney disease, and 9 out of 10 do not know it. Nearly 40% of cases are not diagnosed until the disease has progressed to kidney failure. By then, patients have lost precious time, families have absorbed enormous strain, and employers and taxpayers are paying for care that comes too late.
Dialysis keeps me alive, and I am grateful for it. Still, survival should not be mistaken for success. Dialysis determines how I sleep, travel, work and plan for the future. It also carries a steep cost.
I spend nearly $15,000 a year on kidney care, and my employer bears higher healthcare costs too. Across the country, late-stage kidney disease costs employers billions of dollars in healthcare expenses and lost productivity, while Medicare pays a major share of the bill.
This is not inevitable. We can identify kidney disease earlier, treat high-risk patients sooner and slow progression before kidney failure begins.
What we lack is a payment system that consistently rewards prevention.
Congress can change that by advancing bipartisan legislation to create a voluntary kidney care shared-savings demonstration. The goal is simple: Reward healthcare systems for preventing kidney failure, not just managing it after the damage is done.
President, CEO, Spina Bifida Association
Alexandria, Virginia
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