Maharashtra Government Yet to Formulate Policy for Rare Disease SSPE, Informs Bombay High Court
Yet to frame a policy on SSPE, a rare disease: State tells HC
Hindustan Times
Image: Hindustan Times
The Maharashtra government has informed the Bombay High Court that it has not yet established a policy for Subacute Sclerosing Panencephalitis (SSPE), a rare and fatal neurodegenerative disease affecting children. The announcement follows a public interest litigation seeking research initiatives and financial aid for affected families.
- 01The Maharashtra government has not yet created a policy for SSPE, a rare disease with a 95% fatality rate.
- 02A public interest litigation was filed by Mahadu Belkar, whose child is affected by SSPE, urging the government to initiate research and provide financial assistance.
- 03SSPE is linked to measles and causes severe neurological deterioration in children.
- 04The petitioner highlighted the rising cases of SSPE in Maharashtra and the lack of government response.
- 05The Bombay High Court is set to discuss the necessity for a policy on SSPE.
Advertisement
In-Article Ad
The Maharashtra government has informed the Bombay High Court that it has yet to formulate a policy addressing Subacute Sclerosing Panencephalitis (SSPE), a rare neurodegenerative disease with a 95% fatality rate affecting children. This update follows a public interest litigation (PIL) filed by Mahadu Belkar, a businessman from Raigad, whose child suffers from SSPE. The PIL calls for the government to initiate research programs to find a cure and provide financial support to families burdened by the disease's treatment costs, which can reach into lakhs (hundreds of thousands of rupees). SSPE, a complication of the measles virus, leads to severe neurological disorders, including vision loss, seizures, and ultimately coma. Belkar expressed concerns that the government's ongoing efforts to eradicate measles by 2026 may not be met, as cases of SSPE are increasing in Maharashtra. The court is expected to examine the need for a policy on SSPE in its upcoming session.
Advertisement
In-Article Ad
The lack of a policy for SSPE may leave affected families without necessary support and treatment options, increasing their financial burden.
Advertisement
In-Article Ad
Reader Poll
Should the government prioritize the formulation of a policy for rare diseases like SSPE?
Connecting to poll...
Read the original article
Visit the source for the complete story.