Maharashtra Government Tells Bombay High Court It Has No Specific Scheme for Rare SSPE Disease
The Maharashtra state government made a significant admission before the Bombay High Court on Thursday, revealing that it currently has no dedicated scheme or program to address subacute sclerosing panencephalitis (SSPE), a rare and devastating neurodegenerative condition caused by a mutated measles virus. This disclosure came during a crucial hearing of a public interest litigation (PIL) that highlights the urgent plight of affected children and their families across the state.
PIL Filed by Grieving Father Seeks State Intervention
The bench comprising Chief Justice Shree Chandrashekhar and Justice Shyam Chandak was hearing a PIL filed in September 2025 by Mahadu Belkar, a resident of Panvel. Belkar's petition was driven by personal tragedy, as his 16-year-old son Tanish had suffered from SSPE for over three years before passing away on March 10, 2026. The petition serves as a poignant appeal for systemic support, emphasizing that it 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."
Belkar's legal submission provides a harrowing description of SSPE's impact, noting that it causes progressive neurological disorders in children, leading to loss of vision and movement, inability to eat, muscular rigidity, and severe seizures or jerks. The disease ultimately progresses to coma and fatality due to irreversible damage to brain regions that control essential functions like breathing and heart rate. The petition underscores that there is currently no known cure for SSPE, making supportive care and management critically important yet financially burdensome for families.
Financial Burden and Systemic Gaps Highlighted
The PIL brings to light the severe financial strain faced by families dealing with SSPE. According to Belkar's petition, the monthly average expenses for care and treatment range between Rs 55,000 and Rs 60,000, while hospitalization bills can "run in lakhs (of rupees)." Compounding this hardship is the fact that SSPE is not mentioned in the National Policy for Rare Diseases (NPRD), and children diagnosed with the condition are typically excluded from mediclaim policies offered by insurance companies.
Belkar provided a list of 62 known SSPE cases in Maharashtra, with a majority involving young children, illustrating the scale of the issue within the state. His petition argues for urgent state intervention to secure the fundamental rights of these patients, stating that the constant financial expenditure creates an overwhelming burden for parents.
Government Responses and Legal Arguments
During the court proceedings, the state's advocate, Onkar Chandurkar, confirmed that Maharashtra has no scheme directly addressing SSPE. However, he noted that in July 2025, the state government had written to the central government requesting the inclusion of SSPE in the National Policy for Rare Diseases, indicating some level of administrative acknowledgment of the problem.
The central government's advocate informed the court that he is still awaiting instructions on the matter, reflecting potential delays in policy coordination between state and central authorities.
Advocate Kaushal Tamhane, representing Belkar, referenced a Delhi High Court observation from a case concerning another rare disease. He argued that "just because of policy paralysis, it does not mean it should not be given any consideration," urging the Bombay High Court to take proactive steps despite existing bureaucratic hurdles.
The Bombay High Court has scheduled a further hearing on the matter for Friday, where additional arguments and potential directions are expected to be discussed. This case underscores broader challenges in India's healthcare system regarding rare diseases, financial support mechanisms, and the implementation of inclusive policies for vulnerable patient populations.
