The product of vigorous lobbying and minimal deliberation, this one-disease carve-out that Congress passed in 1972 exemplifies the highly politicized patchwork design of the American health care system and its scandalous lack of universal coverage and adequate cost controls.
Anyone with a sense of compassion can applaud saving three-quarters of a million Americans with failing kidneys from death each year. But this program is exorbitantly expensive, and preventive therapies and other effective treatments can be made available at lower costs. It enriches two for-profit companies that control about 70 percent of the dialysis market. It has created perverse incentives for health care providers to supply too many patients with dialysis while devoting scant resources to preventing end-stage kidney disease and providing more kidneys for transplants.
These problems have long been known. Yet for decades policymakers faced insurmountable obstacles in Congress to making valuable reforms, such as controlling the price of renal dialysis, incentivizing less expensive and more convenient at-home dialysis and increasing the number of kidneys available for transplant.
This one-disease benefit raises a broader ethical question: Why is renal dialysis more worthy of such generous federal funding than are other lifesaving treatments for other deadly diseases? While almost 750,000 Americans have end-stage kidney disease, over 30 million are diabetic, over two million are insulin-dependent and diabetes treatment costs less and saves many more lives. Why shouldn’t treatment for severe cases of diabetes and other life-threatening diseases like hemophilia, leukemia and other cancers also be fully funded by Medicare?
While Congress was debating the renal disease benefit, Senator Wallace Bennett, a conservative Republican from Utah, argued “A more reasonable way to handle this amendment” was to make it “part of a broader health insurance bill” — not just insurance against one disease. Yet Congress still has not made good on this basic principle. Instead the kidney disease carve out serves as the most glaring example of the country’s counterproductive patchwork of health coverage.
The Trump administration is now proposing to rein in costs for end-stage renal disease treatment in a way it says will not undermine care. Its recommendations — which include enabling more kidney donations by compensating donors for forgone wages and child care — would be both cost-saving and lifesaving.
But the administration’s plan underscores the absurdity of our current health care debate: It would revamp the program using a provision of the A.C.A. that authorizes the Center for Medicare and Medicaid Innovation to test models of care that work in the private sector and that can enhance service to patients while also reducing costs. This is, of course, the same health care law that Mr. Trump has pledged to dismantle, including by ordering the Justice Department not to defend it in a major challenge heading to the Supreme Court.
Whether or not the administration succeeds, our health care system will remain sorely lacking in basic justice and economic efficiency. It is a system that too often creates perverse incentives favoring the overtreatment of diseases. To avoid this, we must start treating sick people fairly.
Such a path exists: Rather than repeal and replace the A.C.A., we need to revise and reinforce it. With about 90 percent of Americans now covered by health insurance, the A.C.A. was highly successful in improving our irrational system by expanding coverage for effective treatments while also reining in some spending.
That does not mean the law could not be improved by, for instance, reducing the high costs of drugs, co-pays and deductibles. But instead of calling for improvements, Republicans and now even many Democrats are threatening to dismember the law. That would be a tragic mistake when there is nothing close to a consensus on how to replace it.
There are multiple ways to achieve the worthy, non-utopian goal of reducing the uneven, crazily complicated nature of health care coverage, which has contributed to Americans’ having among the lowest life expectancies and highest infant mortality rate of any affluent nation. Reinforcements to the A.C.A. should include a voluntary public option — “Medicare for more” — that would coexist with common-sense improvements to the private employer-based coverage enjoyed by roughly 160 million Americans.
There’s also an economic and an ethical imperative for employers to improve prevention. They can use their leverage with private insurers to insist on health plan performance metrics and innovations like digitally based care systems that track medical problems before they become dangerous.
By revising and reinforcing the A.C.A., we can benefit all Americans without threatening any with the loss of hard-fought, lifesaving health coverage. Surely our fellow Americans with life-threatening diseases of all sorts are also worth saving.
Amy Gutmann is the president of the University of Pennsylvania, where Jonathan D. Moreno is a professor of bioethics. They are authors of the forthcoming “Everybody Wants to Go to Heaven but Nobody Wants to Die: Bioethics and the Transformation of Health Care in America.”