Chronic kidney disease (CKD) affects 30 million adults in the United States—almost 11% of the population. Yet kidney disease patients are at the mercy of a system that is inadequate to care for them—from lack of, or haphazard, diagnosis and little preventative care to the financial incentives that result in patients getting churned through the for-profit industrial complex of kidney care.
Patients deserve better, and therefore a complete overhaul is required. Now is the time for healthcare providers and payers to come together, putting patients first by adopting a multidisciplinary approach that ensures they receive the care most suited to their needs.
Inadequate Care Under Today’s System
As a clinician, teacher and researcher, I’ve seen the struggles that patients with kidney disease endure, and the frustrations that my fellow nephrologists feel trying to help them manage their health.
The current situation is untenable. Rather than focusing on prevention of kidney disease through education and screenings for high-risk individuals, diagnosis remains hit or miss and many people do not realize they have kidney disease until it’s too late.
Other factors contribute to the current state of healthcare for CKD patients. There is no national systematic screening process. And even if tests are done, providers may not properly interpret the results. Often patients do not know they have kidney disease until they’re in the emergency department in urgent need of dialysis. Compounding this, many patients starting dialysis have never seen a nephrologist. Care is fragmented; primary care physicians (PCPs) receive little support, nephrologists are overwhelmed and not supported to focus on prevention, home therapies are underutilized, and many patients still think in-center dialysis is their only hope. Often alternatives to dialysis are not considered or discussed.
This tragic situation often becomes a profitable endeavor for large for-profit dialysis clinics, at the expense of patients and payers.
Patients who are black, Hispanic, Asian, Native American, or of a lower socioeconomic status face even worse outcomes and have lower rates of transplants. The rates of pre-emptive transplant in the United States remains too low. It’s no surprise that the economic model around which this ecosystem has formed rewards providers for moving patients into dialysis, rather than preventing or slowing the progression to CKD and end-stage renal disease (ESRD).
The current situation for kidney disease patients is so absurd and contrary to common sense that John Oliver was inspired to point out how broken the system is in a lengthy segment on his show Last Week Tonight more than a year ago.
Proactive, Multidisciplinary Approach Needed
To ensure kidney disease patients get the best care, we need to move away from today’s reactive approach—where catastrophic events are the most common way patients are recognized by the system—to a more proactive model.
Ideally, the healthcare system should focus on prevention of kidney disease. Clinicians should be empowered with the resources they need to educate and screen for kidney disease in those at highest risk, such as individuals with diabetes and/or high blood pressure or those who take certain medications.
Once diagnosed, patients should receive evidence-based care that is handled by multidisciplinary teams, including a nephrologist and a PCP, who will support them on their journey as CKD progresses and ensure that they, and their families, are prepared for, and confident to handle, life changes that may come throughout that journey. Social support, including peer mentors and mental health and wellness, should be key components of programs to help patients navigate a very complex system.
Patients also need an infrastructure that can support them along their entire journey, from their home life to their interactions with the medical system. Electronic health records should be used for early identification of those at risk. And, those who have advanced kidney disease should be empowered to understand how each new medication, life event, dietary change, or hospitalization can influence their disease progression. Care should be easily organized and accessible, so that any provider can readily understand where patients are in the course of their kidney disease.
Additionally, patients must understand that they have options. Risk for kidney disease, or a CKD diagnosis, does not automatically mean that a patient will need to spend hours a day, several days a week, at an outpatient dialysis center. With the right information and care team, patients and their families can make educated decisions about their care, including the opportunity for in-home dialysis, conservative care without dialysis when appropriate, or a pre-emptive transplant.
Most importantly, the economic model for kidney care must change. Providers should be incentivized to prevent or slow the progression of CKD and end-stage renal disease—not rewarded for moving patients immediately into outpatient dialysis.
To ensure patients receive the care they need and deserve, we can no longer be content with the status quo. It is time that healthcare providers and payers embrace a new, proactive model that puts patients first. By taking this approach, the healthcare community will see how costs can ultimately be reduced while vastly improving care and patient outcomes.