Would Congress still fund the ESRD Program entitlement today?

July 30 marked the 50th anniversary of the Medicare program. In 1965, it was president Lyndon Johnson's vision to help build “The Great Society,” partly by providing older and poor Americans affordable health care.

Seven years later, under President Richard Nixon, Congress approved coverage of the ESRD Program, the only federally funded entitlement since then for treating a specific disease state.

Both programs have met goals of providing medical care for patients in need. But they have likewise been criticized for being expensive and in need of improvement.

If a modern-day Shep Glazer, who dialyzed on the floor of Congress in November 1971 to help win Medicare funding of the ESRD Program, would perform the same act before legislators in 2015, would Congress still vote “yes” to approve the program as a Medicare benefit?

The compassionate need to provide life-saving care: has it faded?

Glazer, a 43-year old salesman and father of two from New York, and then vice-president of the National Association of Patients on Hemodialysis, told the House Ways and Means Committee during that hearing that the 4,000 patients in the U.S. who needed the treatment could not afford it. He said a growing number of patients faced the choice of either dying or becoming destitute. And he and others who spoke that day warned that more Americans would be allowed to die when hospitals turned them down for dialysis because they couldn't pay the $25,000-a-year cost. The Life and Death Committees had already sentenced citizens with kidney disease to die because of limited resources. Should he be the next victim?

His passionate testimony, “If your kidneys failed today, would you want the opportunity to live? Wouldn't you want to see your kids grow up?” he said to Congress, along with others from NAPH, led to enactment of the ESRD Program in July 1973.

A Congress swayed by a passionate plea to save lives. But has the program fulfilled its original intent? Like LBJ’s vision for Medicare just eight years early, it’s not clear if government-funded health care is the best model.

Days of future past

Of course, it’s hard to predict how a government subsidy will fare decades after it is instituted. In 1966, the first year that Medicare was enacted, the government spent $3 billion and served 19 million people. Today, that patient number tops 50 million and program costs are expected to be $1 trillion in seven years —double what was spent just last year.

The analysts didn’t do much better with the ESRD Program. Experts believed in 1972 that it would ultimately serve 10,000 people with kidney failure and would cost Medicare about $135 million annually. They expected many of those on dialysis would return to work — paying taxes that would help cover the costs involved. Instead we have just over a half a million Medicare beneficiaries being treated for ESRD (2012 U.S. Renal Data System figures = 525,481; includes transplant) at a cost of over $28.6 billion a year. And according to U.S. Renal Data System data, only about 10% of patients with ESRD are employed.

A $135 million program in 1973; a $28.6 billion program in 2012.

Watching money slip away

Should government be running a health care system? Most developed countries do. But capitalism has made Medicare ripe for fraud. In 2014, $60 billion in payments were made by Medicare either in an incorrect amount or should not have been made at all, according to a recent Government Accountability Office report. That alone would cover two years of treating ESRD patients.

The ESRD Program has had four settlements for fraud and abuse since 2000, totaling $1.45 billion.

Have we made progress for patients?

So if Glazer proved effective and stepped into a newly-funded ESRD Program in 2015, would he be getting better care––and have better outcomes? Certianly, technology has improved. Better drugs. More fistulas. A more comfortable dialysis environment. Better successes with transplant. But:

At 43, he might find the dialysis clinic filled with much older patients. “Has the pendulum swung to far?” he might ask himself.

If he kept his job, would he be able to find a dialysis clinic that offered an evening shift or an in-center nocturnal dialysis program?

Ff he chose home dialysis, he might wonder why he is in such a very small circle––much different from dialysis in the 1960s when dialysis at home was the best option. Less than 12% of patients today are on home dialysis. In NN&I’s annual survey among the 10 largest dialysis providers in the U.S., published this past July, the home hemodialysis population grew by less than 500 patients between 2014-2015. Growth in the use of peritoneal dialysis was about 1,400. Together, they represent just over 10% of the growth for the in-center hemodialysis patient population––around 17,000.

On the positive side, Glazer's improved anemia management might in fact help him keep that salesman job. At 43, better management of phosphorus and hypercalcemia might help him live longer and stay mobile. He might be able to find a living-related kidney donor, or if not, maybe the availability 10 years from now of a wearable artificial kidney.

We can do better

Medicare and the ESRD Program have come a long way. If it had a more accurate picture of the potential ESRD patient population––the millions identified in CKD stages today with diabetes, congestive heart failure, and those with kidney diseases from other causes – would it approve a program that would cost taxpayers $28 billion+ a year —and save lives?

The ESRD Program has done that. But maybe we should expect more than just saving lives. -by Mark Neumann