Mumbai: Bombay high court on Friday directed the Union Ministry of Health and Family Welfare to reply to a petition that seeks financial assistance for the treatment and care of patients of 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 by Panvel resident Mahadu Belkar whose son, Tanish (16), suffered from SSPE for over three years. Tanish died on March 10.Belkar’s petition said SSPE causes progressive neurological disorders in children resulting in loss of vision and movement, inability to eat, muscular rigidity with seizure/jerks eventually leading to coma and fatality due to damage to brain regions that control breathing and heart rate. SSPE is not included in the National Policy for Rare Diseases (NPRD), 2021. Belkar also sought direction to the Centre and state to conduct research to find a cure for SSPE and to frame policies for such patients.On Thursday, the state’s advocate Onkar Chandurkar said it has no scheme for SSPE. On Friday, Centre’s advocate Apurva Gupte sought time to seek instructions. The judges noted that under NPRD a fund for providing financial assistance of Rs 50 lakh as one-time payment has been created.Belkar’s advocate Kaushal Tamhane said Centre has taken a stand that SSPE “is not curable and hence cannot be included” in NPRD. He submitted a Jan 30, 2025 letter written by Union health minister J P Nadda to MP Ajay Tamta on the decision taken by the Central Technical Committee for Rare Diseases (CTCRD). The judges also took note of the July 19, 2025 letter by state health minister Prakash Abitkar to Nadda to review CTCRD’s decision.Referring to Delhi high court’s decision in a case regarding another rare genetic disease — Duchenne Muscular Dystrophy — Tamhane said right to health has attained the status of fundamental right of the person suffering from SSPE. The judges said the issue flagged in the PIL requires a reply affidavit by the Union ministry and posted the hearing on June 19.The parents of a few patients, among the “62 known SSPE cases” in Maharashtra, attended Friday’s hearing.Outside the HC, Belkar told reporters that Tanish was in class VII before he contracted SSPE. His wife Jaya broke down and said their son “died peacefully as compared to his suffering for the past three and half years”.The parents recounted their struggle and financial inability. They said doctors ask them not to bring the children to the hospital unless they have pneumonia. Since three years, they have been seeking govt help and have approached almost all ministers in Mantralaya. A parent said he had to sell a house and farm to fund his child’s treatment, while another said he had taken bank loans.The parents said that their children had taken the MMR (measles, mumps and rubella) vaccine, yet contracted SSPE.Thane resident Kalpana Jagtap, mother of an eight-year-old boy, said they spend Rs 50,000-55,000 a month on physiotherapy, neurological (anti-seizure) medicines, hygiene products like diapers and nutritional food/supplements, including protein.“All children were normal before this,” said Imran Shaikh from Mahad in Raigad, showing a video of his daughter at four years and a picture of her now at nine years, bedridden. The parents said the court is their “only hope” and “final resort”, adding “or else the court should allow euthanasia for our children as done in Harish Rana’s case.”
