Lifelong Enzyme Therapy: A Call for Policy Change

Maharashtra BJP MP Anil Sukheorao Bonde has called on the government to ensure continuous life-saving Enzyme Replacement Therapy (ERT) for children with rare diseases. This plea was made during the Zero Hour in the Rajya Sabha on Friday.

Bonde highlighted the national policy on rare diseases emerged in 2021 to offer financial aid, providing up to Rs 50 lakh for treatments like ERT, crucial for managing conditions such as lysosomal storage disorders.

Bonde urged the government to consider extending this support, suggesting CSR and core funding be leveraged for uninterrupted therapy, emphasizing the dire consequences of treatment discontinuation.