President Donald Trump signed an executive order Wednesday revamping care for kidney disease so more people whose kidneys fail can have a chance at early transplants and home dialysis, and others don't get that sick in the first place.
Trump said his order was aimed at "making life better and longer for millions" by increasing the supply of donated kidneys, making it easier for patients to have dialysis in the comfort of their own homes and prioritizing the development of an artificial kidney.
The changes won't happen overnight because some initiatives will require new government regulations.
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Because a severe organ shortage complicates the call for more transplants, the Trump administration will try to ease the financial hardships for living donors by reimbursing them for expenses such as lost wages and child care.
"Those people, I have to say, have never gotten enough credit," Trump said. "What they do is so incredible."
Another key change: steps to help the groups that collect deceased donations do a better job. Trump said it may be possible to find 17,000 more kidneys and 11,000 other organs from deceased donors for transplant every year.
For families like those of 1-year-old Hudson Nash, the lack of organs is frightening. Hudson was born with damaged kidneys, and his parents hope he will be big enough for a transplant in another year. Until then, "to keep him going, he takes numerous medicines, receives multiple shots, blood draws and more doctors' visits than I can count," said his mother, Jamie Nash of Santa Barbara, California.
Today's system favors expensive, time-consuming dialysis in large centers — what Trump called so onerous "it's like a full-time job" — over easier-to-tolerate at-home care or transplants that help patients live longer.
More than 30 million American adults have chronic kidney disease, costing Medicare a staggering $113 billion.
Careful treatment — including control of diabetes and high blood pressure, the two main culprits — can help prevent further kidney deterioration. But more than 700,000 people have end-stage renal disease, meaning their kidneys have failed, and require either a transplant or dialysis to survive. Only about one-third received specialized kidney care before they got so sick.
"My health care providers failed me at the beginning of the dialysis continuum," said transplant recipient Tunisia Bullock of Rocky Mount, North Carolina. Her kidney failure struck while she was being treated for another disease, and she woke up in the hospital attached to a dialysis machine. She told Trump that she hoped the new initiatives help other patients find care "with less confusion and more ease."
More than 94,000 of the 113,000 people on the national organ waiting list need a kidney. Last year, there were 21,167 kidney transplants. Of those, 6,442 were from living donors, according to the United Network for Organ Sharing, which oversees the nation's transplant system.
"The longer you're on dialysis, the outcomes are worse," said Dr. Amit Tevar, a transplant surgeon at the University of Pittsburgh Medical Center, who praised the administration's initiatives.
Too often, transplant centers don't see a kidney patient until he or she has been on dialysis for years, Tevar said. While any transplant is preferable, one from a living donor is best because those organs "work better, longer and faster," Tevar said.
Among the initiatives that take effect first:
—Medicare payment changes that would provide a financial incentive for doctors and clinics to help kidney patients stave off end-stage disease. The goal is to lower the number of new kidney failure cases by 25% by 2030.
—a bonus to kidney specialists who help prepare patients for early transplant, with steps that can begin even before they need dialysis.
—additional Medicare changes so that dialysis providers can earn as much by helping patients get dialysis at home as in the large centers that predominate today. Patients typically must spend hours three or four times a week hooked to machines that filter waste out of their blood.
Home options include portable blood-cleansing machines, or what's called peritoneal dialysis that works through an abdominal tube, usually while patients are sleeping.
Today, about 11% of patients in kidney failure get at-home dialysis and an additional 3 percent get an early transplant. By 2025, the goal is to have 80% of people with newly diagnosed kidney failure getting one of those options, officials said.
These changes are being put in place through Medicare's innovation center, created under the Obama-era Affordable Care Act and empowered to seek savings and improved quality. The administration is relying on the innovation center even as it argues in federal court that the law that created it is unconstitutional and should be struck down entirely.
Other initiatives will require new regulations, expected to be proposed later this year. Among them:
—allowing reimbursement of lost wages and other expenses for living donors, who can give one of their kidneys or a piece of their liver. The transplant recipient's insurance pays the donor's medical bills. But donors are out of work for weeks recuperating, and one study found more than one-third of living kidney donors reported lost wages, a median of $2,712, in the year following donation. Details about who pays and who qualifies still have to be worked out.
—clearer ways to measure how well the nation's 58 organ procurement organizations, or OPOs, collect donations from deceased donors. Some do a better job than others, but today's performance standards are self-reported, varying around the country and making it difficult for government regulators or the OPOs themselves to take steps to improve.
"Some OPOs are very aggressive and move forward with getting organs allocated and donors consented, and there are those that are a little more lackadaisical about it," said Pittsburgh's Tevar. Unlike the medical advances in transplantation, "we haven't really made big dents and progress and moves in increasing cadaveric organs or increasing live donor options."
Associated Press writer Ricardo Alonso-Zaldivar contributed to this report.