Delhi HC Forms Committee to Boost Crowdfunding for Rare Disease Treatment
The Delhi High Court has formed a four-member committee to promote and monitor crowdfunding initiatives for the treatment of rare diseases, in line with the National Policy for Rare Diseases, 2021.
The decision was passed by Justice Sachin Datta while hearing a plea filed by the mother of an infant suffering from Spinal Muscular Atrophy (SMA), a severe genetic neuromuscular disorder. The petitioner sought help to import the high-cost injection Zolgensma, manufactured by Novartis, which is unavailable in India.
The Court noted that despite the existence of a national crowdfunding platform under the 2021 Policy, very limited funds had been collected. It, therefore, aimed to strengthen the mechanism to ensure financial support for patients battling rare diseases.
Committee Members
- Chairperson: Dr Rajiv Bahl – Secretary, Department of Health Research & DG, ICMR
- Member: Dr VK Paul – Member (Health), NITI Aayog
- Member: Joint Secretary-level officer, Ministry of Civil Aviation
- Member: Joint Secretary-level officer, Department of Public Enterprises, Ministry of Finance
Committee’s Mandate
- Raise public awareness and encourage donations for rare disease treatments.
- Sensitise Public Sector Undertakings (PSUs) to allocate CSR funds for these treatments.
- Ensure effective implementation of the National Policy for Rare Diseases, 2021.
- Hold monthly meetings to review progress and ensure timely action.
The Court emphasised that the issue must be viewed through a “lens of inclusion and compassion”, not merely as a medical concern.
