From STATNews.com —
By Isabella Cueto —
Chronic kidney disease, already a problem affecting millions of Americans, is only expected to become more prevalent as the country ages. For those with end-stage disease, a transplant is the ideal treatment, but dialysis is their reality. Hundreds of thousands of Americans flock to clinics three times a week to have their blood filtered through — in the absence of a functioning kidney — a machine.
As a medical treatment, dialysis is a stopgap measure that fails to fix a chronic problem (average life expectancy on dialysis is five to 10 years). As an industry, dialysis has significant flaws, including a lag in home dialysis use. Critics argue dialysis clinics have for decades shirked a responsibility to help patients get on the kidney transplant waitlist and receive organs from living donors — the gold standard.
Now federal health officials are trying to fix those problems with a big policy experiment, using one of their biggest hammers: how dialysis providers are paid.
The new End-Stage Renal Disease Treatment Choices (ETC) model is the largest such experiment in the history of American health care, signaling to some a more aggressive federal approach to improving dialysis. This program, unlike previous voluntary ones, mandates about 30% of dialysis providers in the country participate, and the other 70% are used as a control group.
It’s an exciting pilot to researchers like Adam Wilk, who published an investigation on the ETC model in JAMA Network Open last month.
“In some ways, it looks a lot more like what a lot of people in my line of work do: randomized controlled trials,” said Wilk, a health economist and health services researcher at Emory University’s Rollins School of Public Health in Atlanta.
But randomization, a critical step in any trial of this kind, isn’t foolproof, and Wilk found substantial difference.
Home dialysis up, but not enough
While the rate of home dialysis use has improved — from 6.8% in 2009 to 12.6% a decade later — the U.S. still falls far behind some other countries. Within that disparity, there is another: People who identify as Black or Hispanic have lower rates of use of home dialysis, studies have found.
Historically, the way the system was set up in the United States, there was a stronger financial incentive for providers to prioritize in-center dialysis instead of home dialysis — seeing patients in the clinic made more money. Now, federal health officials have found home dialysis is more affordable for the health care system than brick-and-mortar dialysis facilities, so Medicare has an interest in making it more popular.
Lingering questions about how well patients did on home dialysis compared to in-center treatments have also been answered. Studies suggest patients perform just as well on home dialysis as they do with in-center treatment, and some even show patients on home dialysis fare better and receive transplants more quickly than their peers who report to the clinic.
Not only has home dialysis been deemed safe for many patients, but it can boost quality of life by offering patients the flexibility to schedule treatments whenever they want. Still, other patients like the compartmentalization that in-center dialysis offers them (medical care stays at the clinic, and home is for other pursuits). Patient advocates say the important piece is making sure everyone on dialysis is told about their options for care, whether it’s home dialysis or pursuing a kidney transplant.
In 2008, federal health officials released a new set of rules every dialysis center in the nation had to follow in order to receive Medicare dollars. Those new guidelines finally forced dialysis and transplant centers to start communicating. But even today, nearly 15 years after that decree, patients are often left to connect the dots of their care. There are significant problems in ensuring dialysis facilities help patients get transplants, said Teri Browne, a University of South Carolina researcher whose work focuses on racial disparities in kidney transplant access in the Southeast United States.
Through her research as part of the Southeastern Kidney Transplant Coalition, Browne has interviewed dozens of dialysis patients, most of them African American, about their experiences. What she has heard, over and over again, is that patients are interested in getting a kidney transplant but aren’t given the adequate information (or didn’t remember receiving information) in order to actually pursue a transplant. Even though dialysis facilities were required to educate patients about transplant options, the Medicare mandate had “no teeth” to enforce the rule, Browne said. Some dialysis facilities still report no patients on the transplant waitlist, and none or very few interested in receiving a new kidney — a fact that tells her dialysis providers are still not doing enough to help patients navigate the system, she said.
Even dialysis centers that strive to help patients navigate the complicated transplant waitlist struggle with low staffing and high patient volumes, a crisis made worse by the Covid-19 pandemic. In national surveys, Browne and her colleagues found some nephrology social workers had more than 200 patients at a time.
“We know that leaving the kidney disease health care system to its own devices, to do things by themselves for the good of patients, has just not worked. So if the major payer of kidney disease care is mandating improvements in the quality of care that would lead to better access and better equity in the system, hopefully that is going to be the lever that changes the system,” Browne said.
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