Bombay High Court Seeks Centre’s Response on Inclusion of SSPE in Rare Diseases Policy

The Bombay High Court sought a response from the Central government on a PIL requesting inclusion of Subacute Sclerosing Panencephalitis (SSPE) under the National Policy for Rare Diseases, 2021.

The petition highlighted the absence of financial and medical support for patients suffering from this fatal neurological disorder, which is currently excluded from the policy.

The Court noted that while the policy provides financial assistance for certain rare diseases, SSPE has been left out due to the lack of definitive treatment.

It directed the Centre to clarify its stand, while also considering concerns around patients’ right to healthcare and the heavy financial burden on families.

[Mahadu Lahanu Belkar v. UOI]