The Delhi High Court’s recent order may bring a much-needed reset to the crowdfunding portal for rare-disease treatment, a Union Health Ministry initiative that is struggling to attract funds, having raised just ₹3.9 lakh for over 4,000 registered patients in three years since its launch in 2021.
The initiative was launched with the hope that India’s corporate sector, philanthropists, and compassionate individuals would step in to fill a life-saving gap. However, for families with members battling disorders like spinal muscular atrophy (SMA) – where a single life-saving injection could cost around ₹17.5 crore – the crowdfunding platform’s failure has meant despair and lost hope.
Manjit Singh, who lost two sons to Hunter syndrome and now heads the Lysosomal Storage Disorder Support Society, told The Hindu that over 50 patients suffering from rare diseases have died in the past two years. He called these “preventable deaths”.
In an order passed on October 28, the High Court constituted a high-powered committee, chaired by Dr. Rajiv Bahl, Secretary of the Department of Health Research, Ministry of Health and Family Welfare (MoHFW), to “supervise and revive” the crowdfunding platform.
Justice Sachin Datta, in the order, observed that the challenges faced by individuals suffering from rare diseases, “are required to be seen through a prism of inclusion and humane lens; rather than being merely considered as a medical problem”.
