In 1969, six patients on dialysis at Kings County Hospital in Brooklyn formed a group to elevate kidney disease awareness, call for better educational resources, and create a community for patients living with chronic kidney disease. They met twice a week in the hospital ward—while hooked up to primitive dialysis machines for 12 to 18 hours at a time—and brainstormed how to advance the goal of dialysis coverage for every American who suffered from kidney failure. Those six patients were the founders of the organization that became the American Association of Kidney Patients (AAKP).

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Paul T. Conway, center, is Chair of Policy and Global Affairs at the American Association of Kidney Patients. Richard Knight, right, is president of the association’s Board of Directors.

Three years later, in 1972, one of them dialyzed in front of the US House Ways and Means Committee, helping shape the public argument that dialysis was a life-saving treatment. That display of courage led to passage of legislation that created the End Stage Renal Disease program that provides Medicare funding for dialysis and kidney transplants. President Richard Nixon signed the bill in 1973, based on the recommendation of his Director of the Office of Management and Budget, Caspar Weinberger. Weinberger, later Nixon’s Health, Education and Welfare Secretary and Ronald Reagan’s Defense Secretary, had met with these brave kidney patients and was impressed by their advocacy that dialysis was more than a treatment—it allowed them to keep working and was a bridge to transplantation. Weinberger lived on dialysis for the last four years of his retirement while maintaining an active voice in national affairs.

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