Delhi HC sets up expert panel to oversee crowdfunding platform for rare diseases | Delhi News

New Delhi: Delhi High Court has constituted a panel of experts to oversee a crowdfunding platform for rare diseases, aiming to boost contributions for patients in need. The move comes in a case involving an infant suffering from a rare condition, whose only potential cure is a one-time injection costing a staggering Rs 17.5 crore per unit, which can only be procured from overseas. The court noted that the platform—set up by the ministry of health and family welfare—has so far failed to generate significant funds. “As per publicly available data, of roughly 3,981 patients registered, only Rs 3,91,589 has been collected to date,” the court observed. The HC said that crowdfunding efforts must be “supplemented by vigorous measures to garner funds, including by channelling corporate social responsibility (CSR) contributions into the platform.” It directed the committee to “ensure suitable measures are taken to achieve the objectives of the crowdfunding platform and secure sufficient resources for beneficiaries.” Justice Sachin Datta said that challenges faced by individuals with rare diseases must be seen “through a lens of inclusion and humanity, rather than merely as medical problems.” He emphasised that given the high costs of treatment and limited govt resources, every effort must be made to ensure that the voluntary crowdfunding platform succeeds in raising the necessary funds. The Centre informed the court that CSR funding initiatives are planned and executed by company boards and cannot be mandated for treating individual patients. The court, however, stressed that “it would be desirable to sensitise PSUs to support initiatives for patients with rare diseases and earmark CSR funds accordingly.” The panel will be chaired by Dr Rajiv Bahl, secretary, department of health research, ministry of health and family welfare, and include Dr VK Paul, member (Health), NITI Aayog, along with joint secretary-level officers from the ministries of corporate affairs and finance. The court directed the committee to raise awareness about the platform and encourage potential donors to contribute to the treatment of rare disease patients. The HC hoped that funds raised under the supervision of the committee may come to the aid of the infant diagnosed in July 2024 with Spinal Muscular Atrophy (SMA) Type 1, a rare and life-threatening genetically inherited degenerative neuromuscular disease, which progressively weakens the muscles used for movement, swallowing and breathing.