22 August,2026 07:59 AM IST | Mumbai | Vinod Kumar Menon
The Bombay High Court in Fort. File pic/Shadab Khan
On September 2, the Division Bench of the Bombay High Court is scheduled to hear Public Interest Litigation No. 119 of 2025, filed over the lack of a policy and support for people suffering from Subacute Sclerosing Panencephalitis (SSPE).
The PIL was filed by Mahadu Belkar a resident of Karanjade in Navi Mumbai, whose son Tanish died of SSPE in March 2026. Part six of mid-day's nine-part series shows how, for affected families, the case has become a route to seek medical support, financial assistance and better data on a disease they say has left them largely on their own. Belkar has also raised concerns over the absence of a statewide registry or mapping of children with SSPE.
Also read | Mid-Day Special: âI cannot leave Aahan'; Mother's five-year battle caring for son with incurable SSPE
A good Samaritan and mid-day reader, deeply moved by Aahan's plight, highlighted in our August 20 report âI have only Aahan', kindly sponsored a special wheelchair for him.
The reader, who wished to remain anonymous, said, "The story about Aahan's diagnosis and condition was deeply worrying, and the ordeal of his mother, Madhuri, compelled me to lend a helping hand to a determined mother in her resolute fight."
Madhuri, Aahan's mother, said, "We are thankful to the good Samaritan, who contacted us through mid-day and sent us the details of the wheelchair ordered. We are also grateful to mid-day for highlighting my son's plight. I can soon take him outside the house."
At the April 17 hearing, the Bombay High Court recorded that the Union government had taken the position that SSPE was not covered under the National Policy for Rare Diseases, 2021, as there was no definitive cure for the disease. The court noted that the PIL was seeking a policy for the healthcare and welfare of SSPE patients and directed the Centre to file a reply. The matter was then posted for June 19, 2026.
PIL No. 119 of 2025
Petitioner: Mahadu Lahanu Belkar
Respondents: Union of India and others
Issue: Healthcare and welfare policy for SSPE patients
Advocate Kaushal Tamhane, partner at Dhanuka & Partners, is appearing pro bono for the petitioners.
"Under the Constitution of India, the Central and state governments are duty-bound to protect public health and ensure a life of dignity for every citizen."
Tamhane said families were facing severe emotional and financial stress, with monthly care costs running into Rs 55,000-Rs 60,000 in some cases. He also raised concerns over children developing SSPE despite reported measles vaccination and said the issue required scientific research and medical intervention, including by agencies such as the ICMR.
"Repeated appeals by grieving families have been ignored by both the Centre and the state."
He said the petitioners hoped the court would ensure medical support, financial assistance and accountability.
Families interviewed by mid-day have repeatedly raised the same concerns
No clear registry
Families say there is no publicly available statewide mapping of SSPE cases.
High treatment costs
Parents interviewed for the series have reported spending tens of thousands of rupees every month.
Limited support
Families have described difficulties accessing medicines, equipment, rehabilitation and financial assistance.
No dedicated policy
The April court proceedings recorded the Centre's position that SSPE was not covered under the National Policy for Rare Diseases because it is not curable.
The petition, which was was filed in December 2025, calls for directions to the Centre and state government to...
. Provide specialised medical infrastructure for SSPE diagnosis and treatment
. Provide financial assistance to affected families
. Collect and disclose data on SSPE cases in Maharashtra
. Frame a policy for the healthcare and welfare of SSPE patients
. Support research into the disease
The PIL relies on data obtained from the Department of Neurovirology at NIMHANS, Bengaluru, through an RTI filed in 2024.
The data records laboratory-confirmed SSPE cases tested at NIMHANS from across India:
Year Confirmed cases
2015 124
2016 130
2017 163
2018 169
2019 201
2020 162
2021 288
2022 327
2023 351
2024 422
The jump: 124 cases in 2015
422 in 2024
The figures are for cases tested and confirmed at NIMHANS, not a nationwide incidence or death count.
Another RTI was sent in 2024 to the Maharashtra Public Health Department seeking information on SSPE cases and the state's preparedness. The department, however, said the RTI request had not reached its office. The PIL includes the RTI acknowledgement and the questions submitted by a Ghatkopar resident. The petitioners have raised this as an example of the lack of reliable government data on SSPE.
For families, the PIL is about what happens after a child is diagnosed with SSPE. They want the government to identify affected children, provide financial and medical support and invest in research. The September hearing could become an important stage in their fight for a formal SSPE policy.
