Trump, speaking at a morning ceremony at the Ronald Reagan Building and International Trade Center, said the order delivers “groundbreaking action to millions of Americans suffering from kidney disease. It’s a big deal.”
In a briefing for reporters before the event, Joe Grogan, head of the White House Domestic Policy Council, described the package of initiatives as the biggest change in kidney care since the government extended Medicare coverage to include chronic kidney failure in 1972.
About 37 million people suffer from kidney disease. Medicare spends $114 billion a year on kidney care — about $35 billion of it for the more than 700,000 people whose kidneys have failed and require dialysis or a transplant to stay alive.
Trump listed the new kidney proposals with other “bold initiatives” he said his administration has launched against long-standing health problems. He cited government work on the opioid crisis, childhood cancer, prescription drug prices and HIV, as well as “Right to Try” legislation that supporters say gives people with life-threatening disorders access to experimental drugs.
The initiatives Trump outlined include experiments with five new payment models to encourage doctors to treat patients earlier and encourage home peritoneal dialysis; a crackdown on some of the 58 nonprofit organizations that do a poor job of collecting organs for transplant; and a public awareness campaign. About 40 percent of people with kidney disease do not know they have it, officials said.
Kidney dialysis is a grueling regimen endured by about 510,000 of the 726,000 people who suffer from end-stage kidney disease, according to the National Kidney Foundation. In the United States, about 88 percent of patients receive hemodialysis, a treatment that requires a device to filter waste and toxins from their blood. Most receive it in clinics or private facilities, usually for four hours a day, three days per week.
Average life expectancy for a person on dialysis is five to 10 years, though some live much longer.
“The kidney has a very special place in the heart,” Trump said. “It’s an incredible thing. People that have to go [through] this — people that have loved ones that are working so hard to stay alive. They have to work so hard. There’s an esprit de corps. There’s a spirit like you see rarely on anything.”
A less expensive and onerous option is peritoneal dialysis, a treatment that uses a fluid infused through a catheter implanted in the abdomen, often while the patient sleeps. The process is used by only about 12 percent of U.S. dialysis patients.
In Hong Kong, officials noted, 85 percent of patients receive home dialysis and in Guatmela it is 56 percent.
Currently, the U.S. system creates incentives for center-based hemodialysis, which is dominated by two companies, Fresenius Medical Care and DaVita. Physicians generally are reimbursed at higher rates for care of dialysis patients than for treatment of patients with kidney disease who do not yet need dialysis.
Amit Tevar, director of the kidney and pancreas transplant program at the University of Pittsburgh Medical Center, said the U.S. model of center-based hemodialysis has not changed because it is effective and patients are not well-educated on alternatives.
“The process of hemodialysis, it may be cumbersome, it may be expensive, it’s not great for the patients, but it does work,” Tevar said. “There’s been no big incentive to change.”
The U.S. transplant system also has been slow to change, part of the reason, advocates contend, that more than 113,000 people are on waiting lists for organs. The vast majority of them are seeking kidneys.
Trump said new measures could yield 17,000 additional kidneys and 11,000 more hearts, livers and lungs for transplant every year — nearly doubling the number of organs transplanted now.
“We think that number is very doable, and it could even be higher than that,” he said.
The administration plan is to cover more costs for live donors of kidneys and livers, including lost wages and child care, to encourage increased donation. And it pledged to crack down on poor performers among the 58 nonprofit organizations that are responsible for collecting organs from deceased donors and getting them to transplant centers.
Each of those “organ procurement organizations” holds a monopoly over a piece of U.S. territory and collects and reports its own data on how successful it is. Some poor performers have manipulated the numbers, researchers have shown.
Trump ordered that clearer and more reliable performance measures be drawn up and said rules would also require personnel from those agencies to be more timely in collecting and transporting organs.
A variety of reviews, including a critique in the American Journal of Transplantation last month and a Washington Post analysis last year, have suggested that providing better data and expanding the pool of donors considered acceptable could dramatically increase the number of organs available for transplant.
In a statement, the Association of Organ Procurement Organizations said its members “support the goal of enhanced performance metrics that improve the ability to recover and deliver organs to those who need them.” The organization also said that changes to expand the pool of acceptable organ donors would increase transplantation because about “20 percent of available donor kidneys were discarded rather than being transplanted” in 2018.