MUMBAI, April 18 -- The Bombay High Court on Friday sought a response from the union ministry of health and family welfare on a public interest litigation (PIL) seeking formulation of a welfare and support policy for patients suffering from Subacute Sclerosing Panencephalitis (SSPE), a rare neurodegenerative disease with 95% fatality rate. A division bench of Chief Justice Shree Chandrashekhar and Justice Shyam Chandak directed the central government to file its reply affidavit within four weeks, after the petitioner informed the court that the government had in July 2025 stated that SSPE cannot be included under the existing National Policy for Rare Diseases, 2021, as it is incurable. The PIL was filed by Mahadu Belkar, a 44-year-old businessman from Raigad and father of a 16-year-old SSPE patient who died last month after suffering for more than three years. Belkar has sought directions to the state government to initiate a research programme to find a cure for the rare disease and provide financial assistance to families of affected children. SSPE, a slow and persistent viral infection related to measles, results in loss of vision and movements, inability to eat, muscular rigidity and seizures, eventually leading to coma and fatality due to damage of brain regions that control breathing and heart rate. The PIL, filed through advocate Kaushik Tamhane, said infected patients have a fundamental right to live with dignity and "the state is duty-bound to support them by providing good quality medical care and financial aid for their nursing and overall wellbeing". Speaking to HT, Belkar said that he and relatives of other SSPE patients had approached several government officials over the past few years, but were not provided any support. "For my son, death was easier than the life he was living after diagnosis," Belkar told HT. "Moving the high court was our last resort. If we don't receive any relief, we will be forced to consider euthanasia as the only option for our children." Belkar said that currently, there were 62 known SSPE cases in Maharashtra and more than 500 across the country. Relatives of other SSPE patients said they were required to spend more than Rs.55,000 per month on medicines, physiotherapy and hygiene. Thane resident Kalpana Jagtap, whose eight-year-old son has been bedridden for over four years after being diagnosed with the rare disease, said he used to be a very playful child. "Everything was normal but he became completely immobile within a month after diagnosis," Jagtap said. Gurunath Ghodke, whose 20-year-old son suffers from SSPE, said he had to sell his house and land to fund his son's treatment. Other parents shared similar stories and said they had been struggling financially to take care of their children post diagnosis. The central government policy of providing Rs.50 lakh financial assistance to hospitals dealing with SSPE was inconsequential as the disease was not curable, they said, seeking maintenance to take care of their children....