Bombay High Court Seeks Centre's Response On PIL Seeking Inclusion Of SSPE In Rare Diseases Policy

The Bombay High Court on Friday ordered the Central Government to clarify its stance on a public interest litigation (PIL) highlighting the sufferings of the families and also the patients diagnosed with a rare neurodegenerative disease called - Subacute Sclerosing Panencephalitis (SSPE), which is caused by mutated measles virus.A division bench of Chief Justice Shree Chandrashekhar and Justice Shyam Chandak sought to know from the Central government how it proposes to go further on the issue. It therefore, while recording the averments in the plea, ordered the Centre to file its detailed reply and adjourned the hearing till after summer vacations. According to the PIL filed by Mahadu Belkar, through advocate Kaushal Tamhane, the SSPE is not enlisted in the country's National Policy for Rare Diseases (NPRD) of 2021, which provides financial assistance and specialised medical support for patients diagnosed with rare diseases. Tamhane told Live Law that the instant PIL highlights the sufferings of at least 62 known patients of the SSPE across Maharashtra, whose family members are compelled to spend at least Rs 50,000 monthly to look after their medical needs as there is no specific cure for the said disease. The petitioner's son Tanish was one of the patients of the SSPE and succumbed to the disease after fighting it for over three years. He died last month. As per the PIL, the disease results in difficult breathing, the virus captures the brain which leads the patient becoming immobile and gradually moves into coma and then dies. "Since there is no specific cure for this disease, the PIL has urged for a direction to the Indian Council of Medical Research (ICMR) to start research and find a cure for the same. The PIL also seeks a direction to the State and also the Central governments to provide financial assistance to the families of such patients so that their medical management can be made easily," Tamhane said. During the hearing on Friday, Government Pleader Neha Bhide along with Additional Government Pleader Onkar Chandurkar informed the bench that the Maharashtra Government presently has no scheme for helping the patients suffering from SSPE. The counsel further told the judges that Health Minister of Maharashtra had written a letter to the Union Health Minister in July 2025, apprising them about the representation he received by the 62 patients and their families, who have sought financial assistance and also medical aide for their kids. The State Health Minister, therefore, urged the Union Health Minister to consider including SSPE in the NPRD Policy of 2021, so that the families could be given some help from the authorities. As there was no clear response from the Central government, the bench asked it to file its response and listed the matter in June for further consideration. Case Title: Mahadu Lahanu Belkar vs Union of India (Public Interest Litigation 119 of 2025)

Bombay High Court Seeks Centre's Response On PIL Seeking Inclusion Of SSPE In Rare Diseases Policy

Narsi Benwal

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