Court Demands Action on Devastating Rare Disease

In a significant development, the Bombay High Court has mandated the union ministry of health and family welfare to respond within four weeks regarding a Public Interest Litigation. This PIL advocates for the creation of a comprehensive welfare and support policy for individuals afflicted with Subacute Sclerosing Panencephalitis (SSPE), a rare and severe neurodegenerative condition. SSPE carries a grim 95% fatality rate and is characterized by progressive damage to brain regions controlling vital functions.

The directive comes after the petitioner highlighted the government's earlier stance in July 2025, which deemed SSPE ineligible for inclusion under the National Policy for Rare Diseases, 2021, due to its incurable nature. The litigation was initiated by Mahadu Belkar, the father of a deceased SSPE patient, who is pressing for state-sponsored research into a cure and essential financial assistance for affected families.

Parents of SSPE patients, like Kalpana Jagtap and Gurunath Ghodke, shared harrowing accounts of their struggles. They highlighted the immense monthly expenses for medicines, physiotherapy, and care, often exceeding ₹55,000 per patient. Many have resorted to selling assets to fund treatment, underscoring the urgent need for government intervention beyond existing, often insufficient, financial aid schemes for incurable diseases. The petition asserts that patients have a fundamental right to dignity and require state support for medical care and overall wellbeing.