Updated 6:30 p.m.
The Trump administration has announced an ambitious plan to change treatment for kidney disease in the United States.
President Trump signed an executive order Wednesday directing the Department of Health and Human Services to develop policies addressing three goals: reducing the number of patients developing kidney failure, reducing how many Americans get dialysis treatment at dialysis centers and making more kidneys available for transplant.
"With today's action, we're making crucial progress on another core national priority: the fight against kidney disease," Trump said at a speech prior to signing the order.
Kidney disease is the ninth-leading cause of death in the U.S. and a major expense for the federal government. Medicare pays for end-stage renal disease treatment, including dialysis and kidney transplant.
"Taxpayers spend more on kidney disease — over $110 billion — than we do on the National Institutes of Health, the Department of Homeland Security and NASA combined," Joe Grogan, head of the White House's Domestic Policy Council told reporters.
The executive order pushes for changes in three areas: prevention, dialysis care and kidney donation. To implement parts of the order, the Centers for Medicare and Medicaid Services announced Wednesday five proposed payment models intended to increase innovation in the delivery of kidney care.
Better prevention of kidney failure is desperately needed, according to Dr. Holly Mattix-Kramer, a kidney specialist at Loyola University Chicago and the president of the National Kidney Foundation. Mattix-Kramer was among dozens of kidney specialists and patient advocates who attended the announcement Wednesday.
"We're extremely excited," she says. "For so long we felt like no one was paying attention to this epidemic of kidney disease."
One problem, she explains, is that there hasn't been financial incentive to get doctors to screen for kidney disease or to diagnose and educate patients about it. "Once you get kidney failure then there's a payment structure for that," she says. "But there lacked a good payment structure incentive for preventing kidney failure, which seems not intuitive and seems obviously something that we should fix."
The executive order proposes to change the way Medicare providers are paid to motivate them to focus on patient education and preventing the progression of kidney disease. It also calls for an awareness campaign. "Forty percent of Americans with some stage of kidney disease do not know they have it," Health and Human Services secretary Alex Azar told reporters on a call Wednesday morning.
A key focus of the executive order is effort to encourage in-home dialysis. One of the new, proposed CMS models incentivizes clinicians to offer this option to patients.
Currently, most dialysis is delivered at dialysis centers, a multibillion-dollar industry dominated by two for-profit companies. In-center dialysis can be time-consuming and burdensome for patients.
"Currently only 12% of American dialysis patients receive it at home. That would compare to 56% in Guatemala and 85% in Hong Kong," said Azar. "We want to get to 80% of those who are under treatment either in-home dialysis or transplanted eventually — so a radical change from where we stand now."
CMS Administrator Seema Verma explained that the current system prioritizes payment to in-center dialysis, but her agency wants to start to incentivize in-home dialysis and transplants.
"The way we currently pay for chronic kidney disease and kidney failure isn't working well for patients," said Verma in a statement.
Mattix-Kramer says the administration's targets for increasing the proportion of patients getting dialysis at home may be overly ambitious. "It's great to have big goals like that, but I do think 80% is going to be incredibly difficult," she says.
For a lot of her patients, it wouldn't be easy to switch to in-home treatment. "You need social support and you need a clean house and you need someplace to have equipment. Many of our patients live in areas where they don't even have a grocery store in their neighborhood," she says. "A lot of those socioeconomic issues would need to be addressed."
Another focus of the executive order is the organ transplant system. Currently, close to 100,000 people are on a waiting list for kidneys.
"Many, many people are dying while they wait," Trump said, addressing a room full of kidney doctors, advocates and patients in Washington, D.C., just before signing the executive order. "We'll do everything we can to increase the supply ... of the available kidneys and getting Americans off these waitlists."
Azar said he believes it's possible to double the number of kidneys available for transplant by 2030. "There is currently a lack of accountability and wide variability among these organ procurement organizations," he said. "The executive order will demand a much higher level of accountability." He also said living donors could receive compensation from the government for lost wages and child care.
Finally, the executive order encourages research and development of an artificial kidney, an innovation that could someday replace the need for transplants.
Administration officials touted Wednesday's news as the first major action related to kidney disease in decades. Previous administrations, including Barack Obama's, have suggested similar initiatives, but not much has changed.
Andy Slavitt, who ran the Centers for Medicare and Medicaid Services under President Obama, praised Wednesday's announcement on Twitter. "Care of kidney patients has been broken in the US for a long time, plagued with a corporate duopoly [and] a lower income minority population losing out," he wrote.
But he also pointed out that as the Trump administration makes this announcement, it is arguing in court that the Affordable Care Act should be struck down as unconstitutional. "There is one law that makes this new change possible. The same law that requires people with [preexisting] conditions get coverage. The ACA," he tweeted. "Without it, there is no authority to do this."
It was unclear how quickly these changes could roll out. Frequently, Trump's executive orders instruct agencies to develop federal rules, a lengthy bureaucratic process. One more immediate change is in how Medicare providers are reimbursed; CMS announced that its proposed payment models would roll out starting in January 2020.
ARI SHAPIRO, HOST:
Kidney disease affects millions of people and costs the government billions of dollars. Today, President Trump signed an executive order with ambitious goals for changing the way kidney disease is treated and paid for.
Trump signed the order in a room full of patients, kidney doctors and advocates.
(SOUNDBITE OF ARCHIVED RECORDING)
PRESIDENT DONALD TRUMP: For these patients, their loved ones and for the impacted - all those impacted by kidney disease, I'm here to say we are fighting by your side, and we're determined to get you the best treatment anywhere in the world.
SHAPIRO: NPR's Selena Simmons-Duffin has details about what the administration wants to do.
SELENA SIMMONS-DUFFIN, BYLINE: When someone has kidney disease, their kidneys don't do a good job of filtering toxins out of their bodies. Usually, there aren't any symptoms until they're really sick.
HOLLY KRAMER: Maybe the first time I'm seeing them is when I need to tell them, you need to start dialysis soon, and we need to get you listed for a kidney transplant.
SIMMONS-DUFFIN: That's Dr. Holly Kramer, a kidney specialist at Loyola University Chicago and the president of the National Kidney Foundation. Kramer says, right now, the financial incentives for providers is backwards. Dialysis is totally paid for by Medicare, but talking to patients about things like diet and exercise to prevent more harm to their kidneys is not.
The executive order calls for new incentives to providers for prevention. It also encourages them to get patients on dialysis at home, which Kramer points out is a return to an earlier time.
KRAMER: My mom, in the very early 1980s, was a home dialysis nurse. And we would drive around these rural areas in northwest Indiana. And I remember seeing the blue shag carpet with a gigantic dialysis machine on top of it and a person sitting in a lounge chair, you know, with the tubing coming out of their arm.
SIMMONS-DUFFIN: These days, only 12% of American patients are on home dialysis. The Trump administration wants to get that up to 80%. Kramer says that's going to be hard.
KRAMER: You need social support, and you need a clean house, and you need someplace to have equipment. And many of our patients live in areas where they don't even have a grocery store in their neighborhood. You know, they live in really small apartments that aren't clean.
SIMMONS-DUFFIN: Today, dialysis mostly happens in centers and strip malls. Trump administration officials say that's expensive and doesn't work well for patients. A lot of details aren't yet public about how they will get this all done or when. And previous administrations have tried to address some of these issues before with limited success. For doctors like Holly Kramer, and for patients, change can't come soon enough.
Selena Simmons-Duffin, NPR News.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.