The Delhi High Court has set up a panel of experts to revive a struggling crowdfunding platform meant to support patients with rare diseases. The move aims to boost donations for expensive treatments that most families cannot afford.
The case that prompted the court’s action involves an infant diagnosed with a rare genetic disorder. The only available treatment is a single-dose injection costing about Rs 17.5 crore, available only abroad.
The court noted that the platform, created by the Union health ministry, has raised barely any money. “Of the roughly 3,981 registered patients, only Rs 3,91,589 has been collected,” the court said.
Justice Sachin Datta said that rare disease cases must be viewed “through a lens of inclusion and humanity,” not just as medical issues. He urged the government to make every effort to ensure that the platform succeeds, given the high treatment costs and limited public funds.
The court directed that fundraising should be strengthened through corporate social responsibility (CSR) contributions. It suggested involving public sector units and private firms to support rare disease patients through their CSR budgets.
The Centre said CSR spending is decided by company boards and cannot be mandated for specific patients. The court responded that it would still be “desirable to sensitise PSUs” to help fund treatments for rare diseases.
The panel will be chaired by Dr Rajiv Bahl, secretary of the Department of Health Research, and include Dr V.K. Paul from NITI Aayog, along with senior officials from the ministries of corporate affairs and finance.
The committee has been asked to raise awareness about the platform and encourage more donors to contribute.
The court said it hopes that the funds raised under the panel’s supervision will help the infant diagnosed in July 2024 with Spinal Muscular Atrophy (SMA) Type 1, a rare, life-threatening condition that weakens muscles needed for movement, swallowing, and breathing.
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