Bombay High Court Directs Centre to Respond on Inclusion of SSPE in Rare Diseases Policy
The Bombay High Court has sought a detailed clarification from the Union Government regarding the inclusion of Subacute Sclerosing Panencephalitis (SSPE) in the National Policy for Rare Diseases. SSPE is a fatal neurodegenerative condition resulting from a mutated measles virus. The court emphasized the distress of affected families and questioned the government's proposed support mechanisms.
Key Facts
- Court / Bombay High Court : Issued notice to Centre
- Disease / SSPE : Rare neurodegenerative condition
- Policy / Rare Diseases : National Policy for Rare Diseases 2021
- Cause / Virus : Mutated Measles Virus
The Public Interest Litigation (PIL) before the Bombay High Court highlights a critical gap in India's public health policy regarding orphan diseases. SSPE, although rare, has a disproportionate impact on pediatric populations, often occurring years after a measles infection. Currently, the National Policy for Rare Diseases (2021) categorizes diseases into three groups for financial support, and the PIL seeks to ensure SSPE patients receive similar coverage.
- Legal Basis: The court's intervention is based on the Right to Health as an integral part of the Right to Life under Article 21.
- Medical Context: SSPE is a slow-progressing but fatal disease. The mutation of the measles virus prevents the immune system from clearing it, leading to brain inflammation and death.
- Administrative Demand: A division bench of Chief Justice Shree Chandrashekhar and Justice Shyam Chandak has ordered the Centre to file a detailed reply on medical funding for such 'rare' cases.
The outcome of this case could expand the scope of the rare diseases policy, mandating the government to provide life-saving drugs and financial assistance (up to ₹50 lakh under current guidelines) for SSPE patients. This serves as a vital case study in judicial activism for healthcare equity.
Glossary
Term: Orphan Disease. A rare disease that affects a small percentage of the population, making it commercially non-viable for pharmaceutical companies to develop treatments without government support.
Term: SSPE. Subacute Sclerosing Panencephalitis, a chronic, progressive brain inflammation caused by a persistent infection with measles virus.
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