A discussion at the European Health Summit held in Brussels revealed common delays in diagnosing rare kidney diseases, negatively impacting the lives of patients and their families. New data from the Rare Kidney Disease Scale by Subi shows that early diagnosis can reduce the health and economic burdens faced by patients and caregivers.
Lydia Abad-Franch, the medical director at Subi, emphasized that "early diagnosis is crucial to alleviating the health, economic, and emotional burdens faced by patients and caregivers." However, delays in diagnosis remain common, as Daniel Gallego, president of the European Kidney Patients' Federation, shared his personal experience of being diagnosed with kidney disease at the age of twenty, which significantly affected his life.
Event Details
Data from the Rare Kidney Disease Scale indicated that one-third of patients wait more than three years for a diagnosis, while others wait up to five years. When diagnosis comes late, treatment options are limited, increasing the likelihood of needing dialysis or organ transplants, which are costly for the healthcare system and patients.
Abad-Franch added that "patients must spend three days a week, four hours each session at a dialysis clinic," affecting the entire family's life and creating high levels of anxiety, depression, and guilt.
Background & Context
Rare kidney diseases pose significant health challenges in Europe, requiring specialized care and early treatment. Despite scientific advancements in this field, healthcare systems are slow to adapt to these changes. It is essential that early diagnosis is integrated into public health strategies.
Experiences from countries like Japan show that organized health screenings can be effective, as urine tests are routinely used to identify early signs of kidney disease. However, the use of these tests in Europe remains insufficient, with urine tests conducted for only about 50% of diabetic patients, despite guidelines recommending annual screenings.
Impact & Consequences
The consequences of delayed diagnosis extend beyond mere survival; they also encompass quality of life. Health policies must reflect these dimensions, as Gallego called for a more comprehensive approach that considers quality of life, mental health, and family support.
These challenges require a swift response from policymakers, as Nikos Papandreou, a member of the European Parliament, highlighted the need to integrate screening more effectively into public health strategies, especially for the most vulnerable populations.
Regional Significance
In the Arab region, kidney diseases are a significant health issue, with rising incidence rates. Delays in diagnosis can exacerbate patients' health conditions, necessitating improvements in healthcare systems and the provision of necessary screenings on a regular basis.
In conclusion, the challenges facing the diagnosis and treatment of rare kidney diseases in Europe reflect the urgent need for serious steps to improve health systems, not only in Europe but worldwide, including the Arab world.