How does the crisis in care for children with rare lysosomal disorders reflect broader challenges in India's healthcare system?

The crisis in care for children with rare lysosomal disorders in India highlights significant gaps and challenges within the broader healthcare system. Lysosomal storage disorders (LSDs) are a group of rare genetic diseases requiring specialized, lifelong treatment, which is often expensive and difficult to access. The situation of these children reveals several systemic issues:

• Limited Awareness and Diagnosis: There is a lack of awareness among healthcare professionals and the public about rare diseases, leading to delayed or incorrect diagnosis. Many patients remain undiagnosed for years.
• Inadequate Infrastructure: Most government hospitals and primary healthcare centers lack the facilities and expertise needed to diagnose and manage rare disorders like LSDs.
• High Cost of Treatment: Treatments such as enzyme replacement therapy are prohibitively expensive and not widely available. Insurance coverage is minimal, and government support is limited.
• Policy Gaps: While the National Policy for Rare Diseases exists, its implementation is weak. There is insufficient allocation of funds and lack of clarity on long-term support mechanisms for affected families.
• Inequitable Access: Most specialized care centers are concentrated in metropolitan cities, making it difficult for patients from rural or remote areas to access timely treatment.
• Poor Data Collection: There is a lack of comprehensive data and registries for rare diseases, which hampers planning, resource allocation, and research.
• Limited Research and Development: India invests little in research on rare diseases, resulting in limited domestic solutions and dependence on imported therapies.

This crisis thus reflects broader systemic challenges like inadequate funding, poor infrastructure, lack of awareness, and policy implementation issues in India's healthcare system, especially for marginalized and less common health conditions.