Tag: Healthcare in India
India’s Smallest Fighters, World’s Costliest Drug: Babies Battling a Rare Disease
Asmika, a 12-month-old baby from West Bengal, suffers from Spinal Muscular Atrophy Type-1, a rare and severe genetic disorder requiring the world’s most expensive drug, Zolgensma, priced at $2.1 million. Despite India’s National Policy for Rare Diseases, gaps in funding, accessibility, and coordination leave families like Asmika’s with limited options, relying heavily on arduous crowdfunding efforts. Experts call for a more empathetic government approach, strategic use of CSR funds, and stronger public-private partnerships to address the needs of rare disease patients in India