Why Is ESRD Covered by Medicare: The 1972 Law and How Coverage Works

Medicare covers end-stage renal disease because Congress, in the Social Security Amendments of 1972, created a one-of-a-kind disease-specific entitlement for people with permanent kidney failure. The law was a response to a decade of public anguish over who would get access to scarce dialysis machines, a sustained lobbying campaign by kidney physicians, and a political moment in which a narrow kidney provision could be slipped into a much larger Social Security bill. It remains the only condition that qualifies a person for Medicare at any age based solely on diagnosis.

The Scarcity Crisis That Forced the Question

Before 1960, permanent kidney failure killed. Dr. Belding Scribner’s development of a permanent vascular access device at the University of Washington that year made long-term hemodialysis possible, and kidney transplantation was advancing at the same time. Suddenly kidney failure was treatable. But machines were scarce and treatment was expensive, which forced an impossible choice about who would live.

In Seattle, the Artificial Kidney Center created an Admissions and Policies Committee in 1961 to decide. Seven laypeople — a lawyer, a minister, a labor leader, a surgeon, a banker, a state official, and a housewife — met in secret every two weeks and reviewed patients by file number, weighing age, marital status, children, income, emotional stability, education, and occupation.¹

In November 1962, LIFE magazine ran “They Decide Who Lives, Who Dies,” exposing how a small group of laypeople was using subjective social-worth criteria to allocate a life-saving treatment. Bioethicists condemned the practice and the committee was nicknamed the “God Committee.”² The article planted the idea that survival should not depend on a committee’s judgment of a person’s worth, and that the federal government needed to step in.³

The Campaign That Produced the Law

The God Committee story did not immediately produce legislation, but it kept the issue alive. Between 1965 and 1972, kidney financing bills were introduced in every session of Congress.³

A White House expert committee chaired by nephrologist Carl Gottschalk reported in 1967 that dialysis and transplantation were established therapies, not experimental, and recommended that treatment be made “universally available” to all patients in medical need. The committee argued that cost-benefit analysis was inappropriate because the government should not place a dollar value on human life. It projected that by 1974 roughly 18,500 patients would need treatment at a cost of $157 million to $205 million per year. The estimates would prove far too low.⁴

The political strategy came largely from Dr. George Schreiner, a Georgetown nephrologist, and Charles Plante, a former Hill staffer whom Schreiner hired as the National Kidney Foundation’s Washington representative in 1969. The two developed a five-year legislative plan that pursued NIH research funding, money through the Regional Medical Program and vocational rehabilitation, and ultimately federal coverage for treatment. Congressional allies included Senators Warren G. Magnuson and Henry M. Jackson of Washington, Senator John Tower of Texas, and Congressman Edward Roybal of California.⁵

Shep Glazer’s Testimony

On November 4, 1971, Shep Glazer, an unemployed salesman and vice president of the National Association of Patients on Hemodialysis, testified before the House Ways and Means Committee while hooked up to a dialysis machine. He told Congress that the roughly 4,000 patients then needing treatment could not afford the $25,000-a-year cost, and that hospitals were turning patients away.⁶ The demonstration left the committee “aghast” and disrupted what The Economist later described as a “typically somnolent” hearing.⁷

The event is often credited as the decisive push for the law, but the reality is more complicated. Glazer experienced a dangerous ventricular tachycardia during the session, and the attending physician had to clamp the blood lines and stop the procedure. Committee staff privately worried about the risk. Schreiner himself had tried to prevent it. Historians of the ESRD program treat the idea that the demonstration alone forced passage as something of a myth; the broader advocacy campaign, the Gottschalk report, and the national health insurance debate all mattered as much.⁵

A Floor Amendment, Not a Hearing

Ways and Means Chairman Wilbur Mills introduced H.R. 12043 on December 6, 1971, to finance treatment for chronic kidney disease. But the provision that became law did not go through regular committee hearings. On Saturday, September 30, 1972, during Senate debate on H.R. 1, the broader Social Security Amendments bill, the ESRD provision was added as a floor amendment. There had been no prior congressional hearings specifically on it. A House-Senate conference committee accepted the Senate amendment barely two weeks later, and President Richard Nixon signed the Social Security Amendments of 1972 (P.L. 92-603) on October 30, 1972. Passage went largely unnoticed by the public, overshadowed by the presidential election.⁵³

What the 1972 Law Did

Section 299I of the amendments effectively deemed people with permanent kidney failure to be disabled for Medicare purposes, extending Part A hospital insurance and Part B medical insurance regardless of age. It was the first disease-specific Medicare entitlement, and it is still the only one.⁸

To qualify, a person must be medically determined to have end-stage renal disease requiring regular dialysis or a kidney transplant, and must either have a sufficient work history under Social Security or Railroad Retirement, be receiving those benefits, or be the spouse or dependent child of someone who meets those criteria.⁹ Coverage took effect July 1, 1973, and reached nearly 90 percent of the population with chronic kidney failure.⁵

How the Coverage Works Now

Qualifying and Signing Up

The eligibility rules have not changed much. A person with permanent kidney failure needing regular dialysis or a transplant can qualify through their own work history, through a spouse’s or parent’s work history, or by already receiving Social Security or railroad retirement benefits. Enrollment runs through the Social Security Administration, and the patient’s dialysis center or medical provider submits documentation of the diagnosis and treatment.¹⁰¹¹

When Coverage Starts

Coverage does not begin the day of diagnosis. For patients receiving in-center dialysis, Medicare typically starts on the first day of the fourth month of treatment. Patients who enroll in a home dialysis training program at a Medicare-certified facility can have coverage begin as early as the first month. For transplant recipients, coverage can begin the month the patient is admitted to a Medicare-certified hospital for the transplant, provided the surgery takes place that month or within the next two.¹⁰

What It Pays For

ESRD beneficiaries need both Part A and Part B for full coverage. Part A covers inpatient hospital services, including dialysis given during a hospital stay. Part B covers outpatient dialysis, physician services, home dialysis training and equipment, most dialysis-related drugs and lab tests, and medically necessary ambulance transportation to a dialysis facility. For transplants, Medicare covers inpatient hospital services, the kidney registry fee, donor evaluation and surgical costs, and blood services.¹² Part D covers prescription drugs not covered under Part B. Under Original Medicare, patients generally pay 20 percent of the Medicare-approved amount for dialysis after meeting the Part B deductible.¹³

When Coverage Ends

For people who qualify only because of kidney failure, Medicare is not permanent. It terminates 12 months after a patient stops dialysis or 36 months after a successful kidney transplant, unless the person also qualifies on the basis of age or another disability. If the transplant fails or the patient has to resume dialysis, re-enrollment is immediate, with no new waiting period.¹⁴

If You Still Have Employer Coverage

Patients with employer or union group health coverage face a 30-month coordination-of-benefits period. The group plan pays first and Medicare acts as secondary, regardless of the size of the employer. After 30 months, Medicare becomes the primary payer.¹⁵

Lifetime Coverage for Anti-Rejection Drugs

The original program had a serious gap: transplant recipients who qualified for Medicare only through ESRD lost all coverage, including for the immunosuppressive drugs needed to prevent rejection, 36 months after a successful transplant. The Consolidated Appropriations Act of 2021 created a new Medicare Part B Immunosuppressive Drug benefit (Part B-ID), available as of January 1, 2023. Eligible transplant recipients whose ESRD-based Medicare has ended can get lifetime coverage of immunosuppressive drugs, though the benefit covers only those drugs and nothing else. Enrollees pay a premium set at 15 percent of the standard Part B monthly rate, plus the Part B deductible and 20 percent coinsurance.¹⁶¹⁷

Why Kidney Failure and Nothing Else

The ESRD benefit has never been extended to any other single disease. Several factors converged in a way that has not been repeated. Dialysis was a uniquely visible, life-or-death treatment with catastrophic costs for individual families. The God Committee gave the issue a moral narrative that moved both the public and lawmakers. A well-organized group of physician-advocates ran a sophisticated multi-year campaign. And the timing was right: Congress was debating national health insurance, the Nixon administration wanted to compete with Democrats on health policy, and a kidney provision could be framed as a narrow step rather than a sweeping expansion.⁵

What followed also likely discouraged Congress from repeating the experiment. The patient population was around 10,000 at passage, and early cost projections proved dramatically wrong. By 1980, 58,000 patients were in treatment, enrollment was growing 22 percent a year, and annual Medicare spending on the program had reached $1.2 billion.³ By the end of 2023, roughly 831,000 people were being treated for ESRD and total Medicare costs for the program hit $55.3 billion.¹⁸ A program sold as a contained benefit for 10,000 patients became a multi-billion-dollar entitlement for hundreds of thousands, and no other disease has produced the same combination of political circumstances needed to replicate it.

1
Los Angeles Times. Life or Death Committee
2
Journal of Ethics, American Medical Association. God Panels and the History of Hemodialysis in America
3
PMC, National Institutes of Health. End-Stage Renal Disease Program History
4
Princeton University, Office of Technology Assessment. Gottschalk Report Findings
5
National Center for Biotechnology Information. Kidney Failure and the Federal Government
6
NBC News. Kidney Dialysis Costs
7
The Economist. Americas Kidney Shortage Costs Taxpayers
8
PubMed, National Library of Medicine. ESRD Medicare Entitlement
9
U.S. Senate Committee on Finance. Social Security Amendments of 1972 – Section 299I
10
Medicare.gov. End-Stage Renal Disease
11
Medicare Interactive. ESRD Medicare Basics
12
Medicare.gov. Medicare Coverage of Kidney Dialysis and Kidney Transplant Services
13
Medicare.gov. Medicare and Dialysis or Kidney Transplant
14
Centers for Medicare and Medicaid Services. Dialysis and Kidney Transplant Resources
15
Centers for Medicare and Medicaid Services. MSP End-Stage Renal Disease
16
Centers for Medicare and Medicaid Services. Part B-ID Provider Information
17
National Kidney Foundation. Expanded Medicare Coverage Immunosuppressive Drugs
18
USRDS, National Institute of Diabetes and Digestive and Kidney Diseases. Healthcare Expenditures for Persons With ESRD