If there was one thing that doomed the Republican proposals to remake health care last year, it was the great uncertainty about how they would cover patients with chronic illness and pre-existing conditions.
Throngs of people with a wide range of ailments staged dramatic protests in and around the halls of Congress during the debate. Night after night, Jimmy Kimmel, whose infant son was born with a serious congenital heart defect, took up the cause on his talk show.
Only one in five people approved of the last failed Republican bill, Graham-Cassidy. A big reason: 87 percent of respondents, including 79 percent of Republicans, said in one poll that insurers should be required to cover people with pre-existing conditions. The bill could have allowed insurers in certain states to charge more for such coverage.
Who doesn’t have a family member or friend with a long-term or potentially recurring medical condition, whose life is maintained by expensive treatments — patients with diseases like Type 1 diabetes, multiple sclerosis, rheumatoid arthritis, heart failure, cystic fibrosis and cancer? They are grateful for medical innovations that allow them to lead long, productive lives but afraid of financial ruin or an inability to get good coverage.
But there is one large group of patients whom the federal government long ago effectively immunized against these now-widespread fears. Through a quiet act of Congress in 1972, people on dialysis with end-stage kidney failure can gain automatic Medicare coverage.
Continue reading the main storyWhen the law passed, dialysis patients probably seemed pretty exceptional: They needed a lifesaving treatment, at a potentially bankrupting price, for the rest of their lives. But today people with many diseases fit that description. That’s why, as the United States attempts to rein in its $3 trillion annual medical bill and revamp its health care system, any plan must involve a solution for people with serious chronic illness, like the one developed for kidney failure almost half a century ago.
“This is an increasingly important issue as we get better at treatments and the risk and costs of chronic illnesses get more predictable,” said Mark McClellan, a former head of the Centers for Medicare and Medicaid Services and the Food and Drug Administration under President George W. Bush, who is now a professor of business, medicine and policy at Duke University.
The high cost of treating chronic illnesses poses a problem for every country. In the United States, it once meant that commercial insurers rejected such patients or charged them sky-high rates. The Affordable Care Act made such practices illegal, but even now insured people with chronic illnesses often face unaffordable costs in an era of high deductibles and co-payments.
With varying success, other countries have found their own solutions, though mostly starting from different places.
“If you have a chronic disease, you shouldn’t be burdened by the cost,” said York F. Zöllner, professor of health economics at Hamburg University of Applied Sciences, explaining the German approach. “It’s not your fault.” He and others note that conventional insurance is meant to cover unpredictable costs. But the costs of chronic illnesses are predictably high.
Germany offers people with chronic disease better-than-standard coverage. Every German is required to have insurance — and guaranteed access to it — typically through more than 100 public nonprofit insurers. People can pick which “sickness fund” to join, and the system is financed through a “contribution” equal to roughly 15 percent of their income — nearly half coming from their employer and the rest from their paycheck. The total payment is capped at about 650 euros per month for adults, which includes coverage for dependent relatives.
While co-payments exist — for prescriptions and hospital stays, for example — they are capped at 2 percent of gross earnings, and people with chronic disease pay half of that, according to Dr. Zöllner, with their out-of-pocket spending on health cost capped at 1 percent of income.
Since expensive prescription drugs are a big component of many treatments, Germany’s state health insurers have been negotiating prices with drugmakers since 2011, and drug prices there are generally lower than in the United States. The patient contribution for any prescription is five to 10 euros.
Kaitlyn West, an American with Type 1 diabetes who recently moved to Germany for graduate school, said that in the United States she had been paying on average $400 per month in out-of-pocket expenses — close to $5,000 each year. The amount fluctuated wildly depending on how her insurance policy at the moment covered her pumps and medicines.
On German public insurance, the monthly contribution is about $105 and her yearly out-of-pocket spending is capped at about $140 for supplies and $45 for insulin. “There are no fees for doctors’ visits, no fees for my blood draws and no hassle getting things done,” she said. “This system allows me to live a normal, stress-free life.”
The German health system is based on the principle of solidarity, not individuality, Dr. Zöllner said. But reframed to appeal to current American concerns, it might translate: “There but for the grace of God go I,” since at this point there are so many treatable chronic diseases. The congressional logic that led to the 1972 kidney-care exception could apply to any of those conditions.
In the 1960s, outpatient dialysis clinics and kidney transplantation were relatively new and too expensive for most patients, leaving insurers and employers to make hard choices about whether to pay for treatment.
Against that backdrop, kidney specialists and lobbyists, including from the National Kidney Foundation, pressed for funding of treatment. One protest featured a patient being connected to dialysis on the House floor. An amendment to a Social Security bill in 1972 allowed kidney patients to enroll in Medicare.
“It is one of the most interesting cases in health care because it’s unique in how we treated a chronic condition,” said Tonya Saffer, senior health policy director at the foundation. “It’s been lifesaving.”
While protecting patients from death and financial ruin, the program has also come with lessons. Once people with kidney disease had Medicare coverage, outpatient dialysis centers popped up across the country to serve a new cohort of paying patients. As the business of medicine grew, treatment was progressively taken over by a small number of for-profit companies with which Medicare and commercial insurers have been locked in a perpetual tug-of-war over potentially exploitative billing. Dialysis centers, for example, were billing not just for the dialysis but also for expensive drugs that were sometimes overused.
To prevent abuses, Medicare today reimburses dialysis by paying a set amount for each treatment session, with a typical limit of three per week, although advocates question whether that number is sufficient. This model, where providers get a “bundled payment” for each treatment session or a per-person payment for each month of care, could be used to cover all sorts of chronic diseases while controlling costs, whether through Medicare or not, Dr. McClellan said.
In 1972, when Congress passed the amendment, many assumed that the kidney entitlement was a temporary measure, and that the United States would soon have some kind of national health system. But Richard Rettig, a historian of medicine, wrote that, in the end, it “was added to Medicare because the moral cost of failing to provide lifesaving care was deemed to be greater than the financial cost of doing so.”
Isn’t that just as true now?
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