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Valentine's Plea: Dying Children Seek Life Aid
16 Feb
Summary
- Over 100 children exceeded Rs 50 lakh rare disease treatment limit.
- Nearly 2,000 rare disease patients await treatment in India.
- Urgent funds release needed to prevent irreversible deterioration.
As Valentine's Day passed on February 14, vulnerable children in India made a critical appeal to Prime Minister Narendra Modi for the 'gift of life'. More than 100 children suffering from rare diseases have exhausted the Rs 50 lakh financial assistance limit under the National Policy for Rare Diseases (NPRD 2021).
This funding gap puts their ongoing treatment at risk of complete halt, potentially worsening their health significantly. Manjit Singh, president of the Lysosomal Storage Disorders Support Society (LSDSS), highlighted that eight patients have already died while awaiting treatment support. LSDSS, established in 2010, advocates for national policy changes concerning rare diseases like Gaucher, Pompe, and Fabry diseases.
Singh has urged the Ministry of Health to release the remaining Rs 271 crore of the allocated Rs 299 crore to the designated Centres of Excellence. This allocation is crucial to initiate treatment for eligible patients and ensure continuity of care for those whose funds have been depleted. Any further delay risks irreversible health deterioration and loss of young lives.
The NPRD 2021 categorizes rare diseases into three groups based on treatment needs and costs. Twelve Centres of Excellence have been identified for diagnosis and treatment. Calls for timely decisions emphasize ensuring no vulnerable patient is left behind in their pursuit of better health.
