Mumbai: State government on Thursday told Bombay high court it has no scheme for subacute sclerosing panencephalitis (SSPE), a rare neurodegenerative disease that is caused by mutated measles virus.Chief Justice Shree Chandrashekhar and Justice Shyam Chandak were hearing a PIL filed in September 2025 by Panvel resident Mahadu Belkar whose son was suffering from SSPE for over three years. Tanish (16) died on March 10.Belkar’s petition said that SSPE causes progressive neurological disorders in children resulting in loss of vision and movement, inability to eat, muscular rigidity and seizure/jerks eventually leading to coma and fatality due to damage to brain regions that control breathing and heart rate.“The petition is filed in the interest of young patients who are in need of a cure for SSPE, nursing and proper medical care and management and for helping parents of the patients, financially, as the treatment, care and management is a constant financial expenditure. There is an urgent need for help from the State in order to secure fundamental rights of the patients,” it stated. Belkar gave a list of 62 known SSPE cases in Maharashtra, a majority are young children.His petition said there is no cure for SSPE. The monthly average expenses come to Rs 55,000-60,000 and medical bills on hospitalisation “run in lakhs (of rupees)”. Further, SSPE is not mentioned in the National Policy for Rare Diseases (NPRD). Children with SSPE are not covered under mediclaim policies by insurance companies.Centre’s advocate said he is awaiting instruction. State’s advocate Onkar Chandurkar said there is no scheme directly dealing with SSPE. He said in July 2025, the state government wrote to the Centre to include SSPE in NPRD.Belkar’s advocate Kaushal Tamhane referred to Delhi high court observation in a case regarding another rare disease, that just because of policy paralysis, it does not mean it should not be given any consideration.Bombay high court will hear the matter further on Friday.
