Bombay HC Seeks Centre’s Reply On SSPE Policy, Parents Raise Euthanasia Plea Amid Treatment Crisis

Mumbai, April 17: The Bombay High Court on Friday directed the Union Ministry of Health and Family Welfare to file its reply to a public interest litigation (PIL) seeking direction to the authorities to frame a policy for healthcare and welfare of the patients suffering from subacute sclerosing panencephalitis (SSPE), a rare and fatal neurodegenerative disorder caused by a mutated measles virus.

A bench of Chief Justice Shree Chandrashekhar and Justice Shyam Chandak granted the Centre four weeks to respond after noting that no affidavit had yet been filed. The matter has been kept for further hearing on June 19.

Centre’s stand on inclusion under rare diseases policy

During the hearing, the HC was shown a January 30, 2026 communication by Union Health Minister JP Nadda stating that SSPE cannot be included under the National Policy for Rare Diseases, 2021, as there is currently no cure for the condition.

The policy, under the Ministry of Health and Family Welfare, Government of India, for treatment of rare diseases, categorises rare diseases in three groups – disorders which are curable with hematopoetic stem cell transplantation or organ transplantation; diseases which require long-term/lifelong treatment; and diseases for which definitive treatment is available at high cost and the therapy continues lifelong.

The policy provides for categorisation of rare diseases and financial assistance of up to Rs 50 lakh for certain treatable conditions. However, the Union government has maintained that SSPE does not fall within its ambit due to the absence of definitive treatment.

Petitioner highlights right to healthcare and financial burden

The PIL has been filed by Panvel resident Mahadu Belkar, whose 16-year-old son Tanish had been battling SSPE for over three years before passing away on March 10.

Appearing for the petitioner, advocate Kaushal Tamhane argued that the right to health is a fundamental right under Article 21 of the Constitution and that patients suffering from SSPE cannot be denied support merely because the disease is incurable.

He urged the court to direct the authorities to frame a policy addressing treatment, care and financial assistance. He pointed out that there are at least 62 known cases in Maharashtra.

State’s response and demands for support

On Thursday, the State government had informed the court that there is currently no dedicated scheme for SSPE patients. It added that it had written to the Centre in July 2025 seeking inclusion of the disease under the rare diseases policy.

Apart from a policy decision and financial assistance, the petition also seeks directions to initiate research into a cure and to ease the financial burden on affected families, with treatment costs estimated at Rs 55,000 to Rs 60,000 per month.

Parents recount distress and financial hardship

Speaking to reporters outside court, Belkar said his son was in Class VII when he contracted the disease. His wife said that after suffering for three-and-a-half years, the child “died peacefully”. Belkars said there is not a single minister in Mantralaya whom they have not approached.

Several parents of children affected by SSPE were also present in court, many of whom described severe financial distress. One of the parents said he sold his house and land for the treatment of their son, while another said he had taken loans.

Some of the parents said that they have approached multiple authorities but received no relief. They expressed that the court was their last hope.

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