New Delhi: The lives of hundreds of children and young patients across India suffering from rare diseases are in grave danger due to halted medical treatments. Parents and patient advocacy groups have made a joint appeal to the Prime Minister and Chief Justice of India (CJI), urging immediate intervention.
Funding Shortage Halts Critical Treatment
Families highlight that one-time funding of ₹50 lakh per patient under the National Policy for Rare Diseases (NPRD-2021) has been exhausted for many, causing treatment to stop. In the past two years alone, approximately 60 children have died, while over 55 patients are still waiting for treatment.
Court Orders Ignored, Health Ministry Appeals
Last year, on October 4, the High Court directed the creation of a national fund of ₹974 crore for rare diseases and recommended removing funding limits. However, the Ministry of Health challenged the order in the Supreme Court, filing a Special Leave Petition (SLP), which has stalled implementation for almost a year. This delay is putting countless lives at risk.
Families Speak Out
Manjit Singh, National President of Lysosomal Storage Disorder Support Society (LSDSS), said, “With every passing week, a child is dying slowly. The High Court’s order guarantees their right to life and dignity. We only hope for its implementation.”
Parents shared heartbreaking accounts:
- Adrija, a six-year-old girl from Kolkata, had shown remarkable improvement while receiving treatment, but her condition worsened after funding ran out.
- Abdul, a 10-year-old boy from Delhi, has not received treatment since September 2024, putting his life in danger.
Urgent Call for Action
Patient advocacy groups are urging the government and judiciary to act immediately, stressing that delayed implementation of the High Court’s directives is costing young lives. They hope for swift resolution to secure funding and uninterrupted treatment for children suffering from rare diseases.
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