Twelve Years to a Diagnosis

I am approaching 50 years of living with a kidney disease that took physicians more than 12 years to diagnose. Between the ages of 4 and 16 years, I spent countless hours and days in hospitals undergoing consultations, laboratory tests, treatments, and every kind of diagnostic procedure. Eventually, the truth surfaced: CKD at a very advanced stage. After 12 years of uncertainty, it took only 7 days without the strength or energy to get out of bed to discover that it was not simple exhaustion, but severe anemia accompanied by devastating kidney test results. Today, many years later—with two kidney transplants and nearly 7 years on hemodialysis, some of which occurred because of unequal access to treatment—I was invited to write about the study “National Assessment of Nephrology Fellow Attitudes Toward and Perceptions of Patient Health Equity in Kidney Care and Training.” This study examines how young nephrologists in training perceive inequalities in kidney care and how prepared they feel to address them.1 Three aspects of the study stand out to me. First, the high level of awareness among these professionals. Eighty percent recognize the existence of inequities and feel responsible for addressing them. Second, approximately 30% of participants acknowledge that they do not know how to reduce inequities and identify gaps in their training related to intercultural communication, language barriers, and the effect of social determinants of health. Finally, differences emerge in perceived capability according to background and sex: Women report lower confidence, while Black and Hispanic physicians report higher confidence in addressing these challenges. Numerous studies have shown that minority populations, individuals with low socioeconomic status, migrants, and people with limited health literacy face a higher risk of developing kidney disease due to structural inequalities.2,3 Being young, White, urban, and coming from a family with medical knowledge and middle-to-high socioeconomic resources was not my reality. It is important to note that my story began more than 30 years ago. Yet the lack of equity was already present then. I experienced it, and I continue to experience its consequences today—consequences that patients faced then and still face now. Inequality in kidney disease often translates into delayed diagnosis, sometimes leading patients to start dialysis suddenly and unexpectedly, with profound biological and psychosocial consequences for both the individual and their family. The lack of early diagnosis can limit access to preferred kidney replacement therapies because there is no opportunity for proper planning. Patients may feel that a treatment has been imposed on them without discussion or choice, triggering a cascade of harmful effects: prolonged emotional adjustment, reduced treatment adherence, resistance to receiving information about their disease, reluctance toward shared decision-making, distrust in the health system, and many other consequences. The World Health Organization defines equity as “the absence of unfair, avoidable, or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, geographically, or by other dimensions of inequality such as sex, gender, ethnicity, disability, or sexual orientation”.4 In an era of personalized medicine, having strong technical expertise, participating in numerous clinical trials, or investing in advanced therapies is no longer sufficient if these efforts are not directed toward addressing the concrete and individual needs of each person. Without this orientation, health care will remain centered on disease rather than on the person, their expectations, and the improvement of their quality of life. Achieving this requires care that is holistic, comprehensive, multidisciplinary, and interdisciplinary to address inequality from multiple perspectives and in collaboration with other professionals together with the central protagonist of the story: the patient. If we want to prevent inequality, we must introduce the person into the equation—with their dignity and their values. As a starting point, we must treat each other on equal footing because no person possesses greater dignity than another. After many years, I have come to understand that promoting health literacy is one of the most valuable investments that can be made at the micro level in the clinical encounter. This must be done gradually, by carefully planning how information is communicated through what I call the “6 Cs” Method, in which information should be: Clear: communicated with transparency and honesty. Complete: presenting all options, including their advantages and disadvantages. Comprehensible: using language that is accessible to the person receiving the information. Concrete: providing deeper explanations where issues are more complex or where doubts arise. Continuous: delivered over time rather than in a single conversation. Co-responsible: encouraging patients to actively participate in caring for their own health. This “6 Cs” framework is based on communication and aims to educate patients and their families, so they can participate in shared decision-making and assume co-responsibility for their care. Beyond ensuring equitable access to health care, this approach promotes patient safety by empowering individuals to become active participants in their own illness. Addressing inequality requires a paradigm shift, one that is already beginning to emerge. Patients are increasingly recognized as central actors whose individual needs must be considered. They become participants in both social and health care decision-making within the system. However, health care professionals remain essential and must adopt a more multidisciplinary understanding of the patient—one that goes beyond academic knowledge to include cultural, social, and economic factors. The earlier these dimensions are incorporated into training, the more effectively they can be internalized. Medical school is an extraordinary academic environment that should strengthen communication training in all its dimensions from delivering bad news (who has not had to communicate a devastating diagnosis and wished for better tools to do so?) to recognizing the nonverbal language of the clinical encounter, which tells patients so much. The inequality gap narrows when people come closer together when humanization, empathy, and the genuine desire to understand and be understood come into play on both sides. As children, our parents teach us repeatedly what is safe and what is not, for example, not putting our fingers into an electrical outlet. They do not say it once, but hundreds of times until we understand. Patients also need communication that is bidirectional, open, ongoing, and that allows space for active participation. Closing the gap between recognizing inequities in care and having the capacity to address them will require changes in health care system design and medical education. It will only be possible with active patient participation, allowing them to contribute their voice and their irreplaceable lived experience. Major organizations such as the American Society of Nephrology, the International Society of Nephrology, and the European Renal Association already recommend intercultural training to help reduce and eliminate this gap.5 When we talk about equity, discussions often focus on ethical goals, regulatory requirements, or budgets. Yet we sometimes forget that caring for people with kidney disease is not merely a policy objective it is a necessity for millions of individuals and requires a more ambitious commitment. This study shows that many professionals are deeply committed, while also revealing a gap between recognizing inequality and having the tools to address it. That gap can be closed if we listen more carefully to patients. We will only move toward truly equitable care by incorporating patient experience and knowledge into medical education and into the design of health policies and programs. Only then will we consider not only the biology of the person but also their biography their context, identity, and needs.