ASN President's Update: Awareness Precedes Action

“I had no idea something was wrong with my kidneys.”

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The first research project I pursued was motivated by the many patients I saw during internal medicine residency training who arrived at our emergency department only to be told for the first time that they were experiencing kidney failure. One of these patients made an indelible impact on me. He was a young man in his 30s who had for weeks been feeling tired with little desire to eat or drink. Otherwise, he appeared well despite having a serum creatinine of 37 mg/dL (normal range, 0.6–1.3 mg/dL) and ultrasound findings consistent with long-standing kidney disease. He shared, with tears in his eyes, that he had never been told that he had kidney disease and therefore, had no opportunity to take action(s) that might have prevented his developing kidney failure.

My patient's experience from 20 years ago continues to be the reality for far too many people. Ideally, people first learn the status of their kidney health in a primary care setting. US policies, such as the Affordable Care Act (ACA) in 2013, made it easier for many Americans to access health coverage through several interventions. These included expanded Medicaid coverage in participating states to adults younger than 65 years old with incomes less than 138% of the federal poverty line, which led to greater access to health insurance and narrowing of racial and ethnic disparities in insurance coverage in those states (1). However, the ACA has not resulted in greater awareness of kidney diseases among affected individuals (2). To cross the chasm of health care access to greater kidney health awareness and action, we must address gaps in screening, detection, and—importantly—communication of results.

The US Preventive Services Task Force is currently reviewing the topic of screening for chronic kidney disease (CKD) among US adults, with a focus on CKD stages 1–3. According to the task force, CKD stages 1–3 are “more likely to be asymptomatic and managed in primary care” (3). Its findings and potential screening recommendations will be particularly critical to prepare for the projected increase in US adults meeting diagnostic criteria for CKD as a result of implementation of the 2021 CKD Epidemiology Collaboration (CKD-EPI) equations without inclusion of coefficients for race (4).

When asked for their views on communicating with patients about their kidney health and managing CKD, a group of primary care clinicians noted several barriers, including their patients’ limited awareness of their own kidney diseases and clinician challenges in staying current with CKD guidelines particularly when faced with limited time and resources (5). A study of patients with CKD that captured audio recordings of patient visits with their primary care clinicians found that awareness of kidney diseases as assessed by a “yes” response to the question, “Do you have a kidney problem or chronic kidney disease?” was no different among patients whose doctors did or did not discuss CKD during their visit (6).

A study has documented that the way we assess CKD awareness among our patients has implications for our ability to fully capture what they know about their condition (7). However, it also seems that how we communicate about kidney health and kidney diseases is of central importance. For example, focusing primarily on discussing laboratory findings (e.g., “Your creatinine was a little elevated.”) may not help people to understand and retain information about their kidney health as much as explaining how the kidneys function in health and disease and how that might impact the way they feel.

March is National Kidney Month in the United States, the #NephMadness competition takes place (https://ajkdblog.org/category/nephmadness/), and the annual celebration of World Kidney Day is Thursday, March 14, 2024. All three are terrific opportunities to raise awareness, wear kidney-themed garments, and communicate the renewed optimism in our community about the future of kidney health.

This year's theme for World Kidney Day is “Kidney Health for All: Advancing equitable access to care and optimal medication practice” (8). The timing of this theme is perfect because we must advocate for access to optimal medication practice while highlighting mounting concerns that newer, highly effective treatments for kidney diseases are not reaching populations who have historically faced barriers to receiving health care (9).

The theme aligns well with ASN's newly launched effort to begin producing Kidney Health Guidance. Such guidance will encourage high-quality, person-directed equitable care across the spectrum of kidney health and diseases from screening and early detection to diagnosis, treatment, and palliative care. ASN will focus on guidance topics that are important for the interdisciplinary kidney care team and their patients, and will prioritize topics wherein there is unmet clinical need or clinical ambiguity. To help address the vast amount of information that clinicians often have to sift through to guide the care of their patients, ASN Kidney Health Guidance will be brief, targeted, and aimed at more timely translation of evidence to support clinical decision-making (10). Later this year, ASN will produce its first Kidney Health Guidance on obesity and kidney diseases.

When I think about the greater awareness needed to advance kidney health and make the treatment options available to people living with kidney diseases, it is clear that each of us can contribute. For example, nephrologists and other clinicians can educate our patients in a timely way about their kidney health, using their preferred language and without the use of medical jargon. We can connect our patients and their families to high-quality educational resources that they might return to often, on their own time, when they feel most ready to receive the information.

Researchers can work to uncover new measures to facilitate early detection of kidney diseases, particularly among populations at a disproportionate risk for progression to kidney failure. Researchers can also examine and test new educational strategies that make use of innovative technologies, such as augmented intelligence, for people with kidney diseases. Such insights could facilitate increased awareness and generate more interest among policymakers in funding additional research. The research recruitment and enrollment process can also serve to educate individuals and their caregivers about kidney diseases.

And finally, it is time for us to consider a sustained campaign to raise awareness about kidney health. Such a movement could lead to improved detection and documentation of the burden of kidney diseases and increased government resources for kidney care and research and could reignite interest in nephrology careers. At a global level, a crusade of this kind could improve access to kidney care in many countries in which such access is extremely limited (11).

Building off of the National Kidney Foundation's “You’re in the 33%” campaign (https://www.kidney.org/phi/155274/awareness), which emphasized that one-third of the population is at risk for kidney diseases, ASN's “We’re United 4 Kidney Health” campaign (https://4kidneyhealth.org/about/) focused on four goals: 1) Intervene earlier to prevent, diagnose, coordinate care, and educate; 2) Transform transplant and increase access to donor kidneys; 3) Accelerate innovation and expand patient choice; 4) Achieve equity and eliminate disparities.

Although these complementary campaigns have raised awareness of kidney diseases in the United States and produced results, most notably last year's passage of the Securing the US Organ Procurement and Transplantation Network Act, we must think bigger, bolder, and—frankly—better. I believe this is the time for global action.

Partnerships among the global kidney community are strengthening, spurred by our recent need to respond together to the COVID-19 pandemic, natural and human-made disasters, and climate change. We are ready to come together to raise awareness about the more than 850 million people worldwide living with kidney diseases.

So, let us use this month to redouble our commitment to raising awareness about the importance of kidney health and the actions we are each taking to advance it. And let us use every month to champion the millions of people with kidney diseases, including the people who will “crash” into dialysis today, tomorrow, and next week, unaware their kidneys are failing.