Three times a week, hundreds of thousands of Americans with end-stage kidney disease trudge to dialysis centers to get the treatment that keeps them alive. Costs are exorbitant and growing, and many patients aren't even told there may be other options.
Nephrologists say the system — dominated by two companies — is long overdue for an overhaul, and now President Donald Trump is trying to provide one. On Wednesday, he signed an executive order to push what administration officials called the biggest change to kidney care in decades.
The administration's goals include getting 80% of patients who would otherwise get dialysis at thousands of clinics around the U.S. into less-costly home care, or to an organ transplant. Health officials plan to launch a public awareness campaign to identify more patients at an early stage of sickness, and to take steps to boost the number of available organs.
Dialysis "is like a full-time job for people," Trump said at an event in Washington where he was flanked by sufferers of kidney ailments. "Doing this from the home is a dramatic, long overdue reform."
Trump promised his administration would everything possible to increase the supply of organs available for transplant by thousands per year.
Dialysis centers are big business, dominated by two entrenched companies, DaVita Inc. and Fresenius Medical Care. Shares of both companies have fallen this week as news of the plan leaked out, with DaVita down 7.6% despite a gain on Wednesday morning, and Fresenius down 3.8%.
"For 50 years we have basically had a stagnant system of how we treat people with chronic kidney disease," said Health and Human Services Secretary Alex Azar, in a conference call before the signing.
The U.S. has "too much in-center dialysis," said Azar, who called the regimen "mentally and physically draining." Dialysis in a clinic typically means spending hours in a chair multiple times a week, hooked up to a machine that helps clean the blood of toxins.
Medicare spent $114 billion on kidney care in 2016, about a fifth of the health-care program's total budget. Of that, $35 billion went to patients in the late stages of kidney failure, who need dialysis, according to a government-funded data registry.
Those costs could soon explode, with the number of patients with advanced disease expected to grow from about 700,000 today to more than 1 million by 2030 thanks to obesity and aging baby boomers, according to one recent study.
"I am not a Trump supporter at all, but this is one of the few things where I completely agree with him," said Holly Mattix, a nephrologist at Loyola University Medical Center in Chicago and president of the National Kidney Foundation, in an interview on Tuesday before she flew to to Washington for Trump's announcement. "There are so many issues with chronic kidney disease. It is the neglected stepchild of all chronic diseases."
DaVita operates more than 2,500 dialysis centers in the U.S. and generated $10.3 billion in sales from dialysis in 2018. Fresenius runs almost 4,000 centers around the world and reported 16.5 billion euros ($18.5 billion) in dialysis revenue in 2018. Together, the companies have more than 70% of the dialysis market in the U.S., according to Bloomberg Intelligence. Both companies also offer home dialysis services.
Peter Grauer, the chairman of Bloomberg LP, the parent company of Bloomberg News, is the lead independent director at DaVita.
Doctors say that home dialysis, while harder to set up and not suitable for every case, is more convenient and easier on patients' bodies. And it can be less costly to deliver because it eliminates the need for nurses and other fixed costs like real estate.
"There is general sense there is under-utilization of home dialysis and under-exposure to to it," said Jeffrey Berns, a nephrologist at the University of Pennsylvania. Patients are shunted to dialysis centers as a default, and once on it, they "rarely switch," he said.
Doctors and nurses aren't always knowledgeable about the in-home options and go with the easiest choice, especially in cases where patients present to specialists with advanced disease on the verge of dialysis. There may also be a financial incentive to keep the clinics going because some doctors have joint ventures with dialysis centers, receiving a portion of the profits.
Transplants are another area where there is considerable room for improvement. There are nearly 100,000 Americans waiting for a kidney transplant, and only about 20,000 get a transplant annually. Each year, thousands die waiting. In addition to increasing the availability of deceased-donor organs, doctors say there needs to be more education about the possibility of living-donor transplants.
Kidney-disease treatment doesn't have to be done the way it is in the U.S. Only 12% of Americans start dialysis treatment at home, compared with 80% in Hong Kong and more than half in Guatemala, Azar said in a March speech where he previewed some of the administration's plans. Azar's father suffered from end-stage kidney disease.
"It is under-penetrated right now because the system is dominated by large, for-profit dialysis providers," said Michael Phillips, a doctor and managing partner at Intermountain Ventures, a unit of the hospital system Intermountain Healthcare.
The Intermountain hospital system has started a project that helps identify kidney patients earlier in the process, and educate them on their options before they need dialysis or a transplant. The goal is to get half of patients who need it using at-home dialysis within the next five years, up from the low teens now, he said.
At Johns Hopkins Medicine, doctors have more than doubled the number of dialysis patients getting in-home care in the past year, through a variety of education and training programs, said Chirag Parikh, head of the nephrology department there.
Ultimately, though, he said what is needed is whole new technology that can make dialysis an easier process on the body.
"We have gone through changes in iPhones and computers and the way we do defibrillators," Parikh said. "But for kidney dialysis, nothing has changed in last 30 to 40 years."