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Rare Child Disease: Govt Policy Still Missing
17 Apr
Summary
- State government lacks a policy for fatal SSPE disease.
- A PIL seeks research, cure, and financial aid for affected children.
- SSPE, a rare complication of measles, has a 95% fatality rate.
The state government informed the Bombay High Court on Thursday that a policy for Subacute Sclerosing Panencephalitis (SSPE), an extremely rare and fatal neurodegenerative disease affecting children, is still under development. This disease carries a devastating 95% fatality rate.
The court's acknowledgement came in response to a Public Interest Litigation (PIL) filed by Mahadu Belkar, a businessman and father of a child with SSPE. The PIL urges the state to initiate research for a cure and provide financial aid to families of affected children.
SSPE is a slow viral infection related to measles, causing progressive neurological damage. Symptoms include vision and movement loss, inability to eat, muscular rigidity, seizures, and eventual coma, often resulting in death due to critical brain function damage.
Despite the global target for measles eradication set for 2026, cases of SSPE in India, particularly Maharashtra, are reportedly increasing. The petitioner highlighted that most affected children in Maharashtra had received vaccinations, suggesting a complex challenge beyond basic immunization.
Parents of SSPE patients face immense financial burdens, as the disease is not covered by health insurance, leading to significant medical expenses. The PIL asserts that affected children have a fundamental right to live with dignity, and the state has a duty to provide medical care and financial support.
