This is a criterion government bureaucracy is usually unable to locate — until now.
The Centers for Medicare and Medicaid Services (CMS) is finally injecting “person-centered care” into government health-care decisions. The customers are patients with End Stage Renal Disease (ESRD), and the product is dialysis.
When the president signed the Advancing American Kidney Health Executive Order in July 2019, a key initiative was increasing the number of ESRD patients receiving dialysis at home rather than in an institutional setting.
CMS is taking the lead with its innovative, “person-centered” model that meets administration goals of making life easier, and longer, for kidney disease patients. It is currently working on rule making for a pilot program that encourages home-centered dialysis.
Chronic kidney disease is the ninth leading cause of death in America, and contributes to other serious health problems. There are five stages of kidney disease, and ESRD occurs when kidneys stop processing bodily waste entirely and the patient must rely on life-saving dialysis to take over this function.
It is also a significant Medicare cost driver, as nearly all ESRD patients are covered by Medicare regardless of age. Hospitalization rates are high, ER visits are six times higher than the average adult, and the total cost to Medicare in 2017 was over $120 billion.
Thirty-seven million Americans (15 percent of adults) have kidney disease, and more than 120,000 begin dialysis each year. All of them live somewhere, and it’s never at an outpatient dialysis facility.
Patients spend many hours several times a week at dialysis centers. The time commitment has a profound negative impact on patients, their families, and their caregivers, and makes it difficult for those still in the workforce to stay employed.
For elderly, low-income, or disabled patients, travel to dialysis centers can be a challenge by itself, especially if their only option is public transportation. This is always exhausting, but now increases COVID-19 risk for an already medically fragile population.
The rate of American ESRD patients receiving home dialysis was only 12 percent in 2016.
As part of its new dialysis delivery model to significantly increase these numbers, CMS would select dialysis centers and health-care professionals to participate across geographic, demographic, and socioeconomic variables. Patients would be routinely and gradually added to the program as the initiative progresses. The government will also incentivize in-home dialysis by increasing reimbursements both to dialysis providers assisting with in-home therapy and to patients.
COVID-19 has had a significant impact on kidney disease patients while also creating new ones. A new analysis from the American Society of Nephrology finds kidney patients at high risk for COVID in part because they are unable to self-isolate at dialysis centers. Several reports, including one from Johns Hopkins, show COVID-19 patients are susceptible to acute kidney injury from the virus, with many now requiring dialysis.
Barb, a dialysis nurse for decades, says dialyzing at home is life-changing for ESRD patients: “Dialysis patients are held captive by treatment schedules. First you have to schedule into a dialysis center based on their availability and not yours. A four-hour treatment can easily double if you have a high fluid load, an emergency arrives, or someone else’s treatment ran over time.”
She continues, “Dialysis patients recognize when they have too much fluid in their system, and if they are able to dialyze at home, they don’t have to wait for treatment, travel to a center when feeling unwell or struggling to breathe, but can treat dangerous fluid overload right away, even doing the procedure overnight while sleeping…. Perhaps most importantly, home dialysis can return freedom and dignity to a group of patients who have had so much taken away.”
Dialysis nurse Rene, with Fresenius Kidney Care in Naples, Florida, agreed: “With 25 years of dialysis care experience, one of the most difficult things I’ve seen for our patients is loss of freedom because they can’t always have treatments on their time. An important priority for us is educating patients about their disease and treatment options even before they require dialysis, and I think most of them would choose in-home treatment.”
In the private sector, businesses ask customers what they want, and then provide it. In the government sector, bureaucrats decide what people want and demand they accept it. With these changes, putting patients’ needs ahead of bureaucratic system convenience could — and should — become baseline.
As with any government policy change, there can be pushback from parties benefiting from the status quo. But home dialysis greatly benefits patients and achieves system cost savings, and providers can remain profitable while gradually shifting their model to home therapy for more of their patients.
If change and innovation can be achieved by the government blob, it should not be hard for the private sector to follow. Classes on human-centered design are always available.
Kerri (Houston) Toloczko is a Senior Policy Fellow for Institute for Liberty, a public policy organization dedicated to limited government, free enterprise, and individual liberty.
