Yet to frame a policy on SSPE, a rare disease: State tells HC

SSPE, a slow and persistent viral infection related to measles, is a complication of the mutated virus in the central nervous system, which causes progressive neurological disorders amongst children

MUMBAI: The state government on Thursday informed the Bombay High Court that it is yet to frame a policy to deal with Subacute Sclerosing Panencephalitis (SSPE), an extremely rare but fatal neurodegenerative disease affecting children that has a fatality rate of 95%.

Yet to frame a policy on SSPE, a rare disease: State tells HC

The statement came in response to a Public interest Litigation (PIL) filed by Mahadu Belkar, a 44-year-old businessman from Raigad and father of a young child affected by the disease. The petitioner sought directions to the state government to initiate a research programme for finding a cure for the rare disease and providing financial assistance to families of affected children.

SSPE, a slow and persistent viral infection related to measles, is a complication of the mutated virus in the central nervous system, which causes progressive neurological disorders amongst children. This results in loss of vision and movements, inability to eat, muscular rigidity and seizures, eventually leading to coma and fatality due to damage of brain regions that control breathing and heart rate.

With the deadline for complete eradication of measles extended from time to time, now fixed at 2026, Belkar said this year’s target is also likely to be missed while cases of SSPE in India, specifically in Maharashtra, are on the rise.

THe petitioner said that the majority of cases in Maharashtra were of young children, who had been inoculated by vaccines not only in government hospitals but also in private hospitals.

“Despite raising the issue with various ministers and officials of the health ministry, both at the central and state levels, neither awareness of the plight of victims’ parents is taken by the government nor has it shown any seriousness to the risk posed by the problem to public health,” the PIL said.

Claiming there was “no cure to SSPE”, the petition said only symptomatic treatment could be given to patients. Since the disease was not covered under health insurance policies, parents of patients had to spend on hospitalisation and treatment and medical bills ran into lakhs, which placed immense financial burden on families, the PIL said.

The PIL further said that infected patients have a fundamental right to live with dignity and “the state is duty-bound to support them by providing good quality medical care and financial aid for their nursing and overall wellbeing”.

The court is likely to examine the issue and the need for policy formulation on Friday.