New Delhi, Feb 6 (PTI) Maharasthra BJP MP Anil Sukheorao Bonde on Friday urged the government to provide life-long and uninterrupted Enzyme Replacement Therapy to children suffering from rare diseases under the existing policy.
Raising the matter during the Zero Hour in the Rajya Sabha, Bonde said the government came up with a national policy on rare diseases in 2021, under which financial support and centres of excellence were established across India.
A financial assistance of up to Rs 50 lakh per patient is provided for the treatment of specified rare diseases, including lysosomal storage disorders (Gaucher, Pompe, Fabry, and Mucopolysaccharidoses).
This support, aimed at reducing the high cost of lifelong Enzyme Replacement Therapy, is administered through designated centres of excellence.
“The therapy aids a child’s growth and stops mental retardation. But after Rs 50 lakh assistance, if there is a discontinuation of treatment, the children get relapsed. And there is a possibility of their life being lost,” Bonde said.
Out of the money allotted, the MP said the government should give these children lifelong enzyme replacement therapy.
Apart from this, the government should allow use of CSR funding and core funding for long-term uninterrupted enzyme replacement therapy. PTI LUX TRB
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