Bombay High Court seeks Centre’s reply to PIL for welfare of patients of rare neurological disorder

The HC noted as per National Policy of Rare Diseases (NPRD), 2021, framed by the Union Ministry of Health and Family Welfare, the rare diseases are categorised under three groups including disorders which are curable with hematopoietic stem cell transplantation or organ transplantation, diseases which require long term/lifelong treatment and diseases for which definitive treatment is available at high cost and the therapy continues lifelong.

Moreover, under the NPRD, a fund for financial assistance to the tune of Rs 50 lakh as one time payment is created.

However, advocate Kaushal Tamhane for petitioner referred to a January 30, 2025 letter by Union Health Minister J P Nadda to a Member of Parliament that Central government took a stand that SSPE is not curable and the same cannot be included in the NPRD as there is currently no definitive curative treatment available for the same.

The PIL claimed the SSPE leads to ” severe neurological deterioration in children” which includes loss of vision, muscle spasms, seizures, dementia, and eventual coma or persistent vegetative state, which often results in a death within a shorter period and present treatment is limited to symptomatic relief.

The Court noted state’s response of no dedicated scheme for SSPE patients at present and referred to a July 29, 2025 letter written by Maharashtra Health Minister Prakash Abitkar to Nadda appealing on “humanitarian basis to urgent necessity to re-include SSPE under NPRD.

Abitkar had claimed SSPE is classified as a rare disease by the World Health Organisation (WHO) and its incidents are “inversely proportional to measles vaccination,” therefore, it is much more prevalent marginalised and lower income groups “who are bereft to standard healthcare services.”

Some of the parents of patients, who had come to HC told the reporters that they had approached several authorities for help as they had to sell immovable assets or take loans for treatment. The parents said that they came to HC with a “hope” or else the court should allow “euthanasia” for their children similar to Harish Rana case recently decided by the Supreme Court. .