WASHINGTON — For Health and Human Services Secretary Alex Azar, Monday’s announcement on how his agency is changing financial incentives for treating kidney disease was in part a personal affair.
“What kidney patients endure is grueling,” Azar said at the annual Kidney Patient Summit, sponsored by the National Kidney Foundation. “I know this firsthand, because my dad suffered from end-stage renal disease [ESRD]. Like others with the disease, my dad initially had to go to dialysis three or four times a week. I saw how draining it is.”
“My dad’s situation did improve,” he continued. “First, we figured out that he could receive peritoneal dialysis, allowing him to be dialyzed at night. This was a revolutionary change in his lifestyle. Then, we were blessed enough that he was offered a kidney transplant from a kind and generous living donor.”
And while Azar’s father was lucky, “too many Americans don’t shift to more convenient dialysis options, and too many Americans never get a chance at a kidney transplant,” Azar said. “But with better policies, we can make these outcomes possible for many more Americans.”
Currently, more than 30 million Americans have some stage of kidney disease, and in 2016 it was the ninth leading cause of death in the U.S., he noted. And more than 100,000 people are on kidney transplant waiting lists.
It’s also expensive to treat, said Azar, with Medicare spending $113 billion in 2016 on treating kidney disease and ESRD. “That represents more than one in five dollars we spend on Medicare.” Azar urged the audience to imagine what it would be like to pay for “kidney health, rather than kidney disease.”
First, he said, “we need more efforts to prevent, detect, and slow the progression of kidney disease … [This can be done by] better investment in effective efforts to treat early kidney disease and related conditions, and researching what drives the progression of the disease.”
Although the Medicare program currently covers most kidney failure patients, “we don’t begin spending a great deal on these patients until they’re already sick,” Azar said. “[And] for all we do know about prevention, we don’t know much about how to predict which patients’ conditions will worsen at what rates, and why.” To help figure that out, 2 years ago the NIH began the Kidney Precision Medicine Project “to better understand the different types of kidney disease, and how they progress, using the same kind of techniques that have yielded leaps forward in targeted cancer treatments. Enrollment for this study will begin in the next several months.”
Enrollment also will begin shortly in a study on the APOL1 gene, which is often found among African Americans and is strongly associated with kidney disease. Transplants in patients with the gene are much less successful than with other patients, he added.
Azar also criticized the way dialysis is provided for ESRD patients in the U.S., noting that 88% of ESRD patients usually start with dialysis at a center while only 12% begin hemodialysis or peritoneal dialysis at home. “This is the complete opposite of the situation in some of our peer nations, including Hong Kong, where more than 80% of patients benefit from some form of in-home dialysis,” he said. “Heck, Guatemala is at 56% peritoneal!”
Changes in payment incentives are needed to improve that situation, Azar said. “For one, we believe we may simply underpay for these alternatives, even though we know how much they can benefit patients’ lives. It’s also more appealing for a dialysis company to add patients to a center where one machine can accommodate multiple patients than it is to provide new services to each patient at home.”
Adam Boehler, director of HHS’s Center for Medicare & Medicaid Innovation, noted in a February 2019 speech at a healthcare information technology meeting that the majority of kidney disease spending by Medicare isn’t actually in dialysis centers. “The majority of spend is in other places — hospitals, complications arising from them, etc.,” he said. “That doesn’t mean we have to cut the spend there; it means you have to change around the way people make money.” Right now, he said, for the dialysis centers, “if somebody gets a transplant, that’s a lost customer.”
In his talk, Azar noted that 4 years ago, Medicare began testing on a payment plan allowing traditional dialysis providers to provide more comprehensive patient care, sharing in the savings as long as patients’ outcomes improve. “It worked remarkably well: In just the first year, the model saved almost $2,000 per patient per year in Medicare costs, reducing hospitalizations while maintaining quality of care,” Azar said.
HHS is also looking at ways to encourage more kidney transplants, such as “ensuring that we’re not discarding healthy, safe organs — which we believe we may be doing today,” he said. An HHS committee that develops guidelines for testing organs for HIV and hepatitis will be hearing new data next month that might allow for more kidneys to be used, Azar added.
The agency also is hosting a KidneyX competition to encourage development of products like artificial kidneys to help improve patient quality of life. “First round submissions closed last week and we got 165 submissions, including a number of proposals that could help advance an artificial kidney,” Azar said. “We’re thrilled with this level of interest, and it shows what a prize competition can drive in an otherwise neglected investment space.”
Paul Conway, immediate past president and chair of public policy at the American Association of Kidney Patients, in Tampa, Florida, said afterward that Azar’s speech “is the most substantive policy speech on kidney disease [and its prevention] in the past 15 years. What the secretary outlined was a vision for more transplantation and better access to home care and prevention. That’s what patients want; they want treatment to match their aspirations.”