Mid-Day Special: Bombay HC to hear PIL seeking support for SSPE patients

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 SSPEThe 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 middayrsquos ninepart 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 SSPEmidday impactAlso read MidDay Special lsquoI cannot leave Aahanrsquo Motherrsquos fiveyear battle caring for son with incurable SSPEA good Samaritan and midday reader deeply moved by Aahanrsquos plight highlighted in our August 20 report lsquoI have only Aahanrsquo kindly sponsored a special wheelchair for himThe reader who wished to remain anonymous said ldquoThe story about Aahanrsquos 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 fightrdquoMadhuri Aahanrsquos mother said ldquoWe are thankful to the good Samaritan who contacted us through midday and sent us the details of the wheelchair ordered We are also grateful to midday for highlighting my sonrsquos plight I can soon take him outside the houserdquoWhat happened in courtAt 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 2026Court recordPIL No 119 of 2025Petitioner Mahadu Lahanu BelkarRespondents Union of India and othersIssue Healthcare and welfare policy for SSPE patientsAdvocate fighting the case pro bonoAdvocate Kaushal Tamhane partner at Dhanuka amp Partners is appearing pro bono for the petitionersldquoUnder the Constitution of India the Central and state governments are dutybound to protect public health and ensure a life of dignity for every citizenrdquoTamhane said families were facing severe emotional and financial stress with monthly care costs running into Rs 55000Rs 60000 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 ICMRldquoRepeated appeals by grieving families have been ignored by both the Centre and the staterdquoHe said the petitioners hoped the court would ensure medical support financial assistance and accountabilityWhy the data mattersFamilies interviewed by midday have repeatedly raised the same concernsNo clear registryFamilies say there is no publicly available statewide mapping of SSPE casesHigh treatment costsParents interviewed for the series have reported spending tens of thousands of rupees every monthLimited supportFamilies have described difficulties accessing medicines equipment rehabilitation and financial assistanceNo dedicated policyThe April court proceedings recorded the Centrersquos position that SSPE was not covered under the National Policy for Rare Diseases because it is not curableWhat the PIL seeksThe 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 diseaseThe NIMHANS numbersThe PIL relies on data obtained from the Department of Neurovirology at NIMHANS Bengaluru through an RTI filed in 2024The data records laboratoryconfirmed SSPE cases tested at NIMHANS from across IndiaYear Confirmed cases2015 1242016 1302017 1632018 1692019 2012020 1622021 2882022 3272023 3512024 422The jump 124 cases in 2015422 in 2024The figures are for cases tested and confirmed at NIMHANS not a nationwide incidence or death countAn RTI that lsquonever reachedrsquo MantralayaAnother RTI was sent in 2024 to the Maharashtra Public Health Department seeking information on SSPE cases and the statersquos 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 SSPEThe question before the courtFor 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