New Delhi: The Delhi High Court has constituted a four-member committee to oversee and promote crowdfunding initiatives for patients suffering from rare diseases, including Spinal Muscular Atrophy (SMA).
The directive was issued by Justice Sachin Datta while hearing a plea filed by the mother of an infant diagnosed with SMA, seeking financial support for her child’s treatment.
Court’s Observation
The court noted that patients suffering from rare diseases face enormous financial challenges due to the exorbitant cost of treatment and limited government funding.
Justice Datta observed:
“Given the exorbitant cost involved in affording adequate treatment to those afflicted with rare diseases and the resource constraints in allocating budgetary outlays for the same, it is imperative that all efforts be made to ensure that the innovative measure undertaken by the Government of India by setting up of a voluntary crowdfunding platform receives the success and results that it deserves.”
Background of the Case
The petitioner’s infant was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 on July 25, 2024. The disease, a rare and life-threatening genetic disorder, progressively weakens muscles used for movement, swallowing, and breathing.
The recommended treatment — a one-time gene therapy injection, Zolgensma, developed by Novartis — costs approximately ₹17.5 crore per dose and is not manufactured in India. Despite having recommendation letters from Sir Ganga Ram Hospital and AIIMS, New Delhi, the parents could not afford to import the drug from the USA.
Government Policy on Rare Diseases
The Ministry of Health and Family Welfare first introduced the National Policy for Treatment of Rare Diseases (NPTRD) in 2017, later revising it as the National Policy for Rare Diseases (NPRD) 2021, which provides ₹50 lakh government coverage per patient.
However, the court noted that the government’s crowdfunding platform under NPRD 2021 has collected only a limited amount so far, emphasizing the need for a structured monitoring mechanism.
Composition of the Committee
The Delhi High Court directed the formation of a four-member panel to enhance transparency and promote effective crowdfunding under NPRD 2021.
The committee will include:
- Dr. Rajiv Bahl – Secretary, Department of Health Research & DG, ICMR (Chairperson)
- Dr. V.K. Paul – Member (Health), NITI Aayog
- Joint Secretary, Ministry of Corporate Affairs (CSR Division)
- Joint Secretary, Department of Public Enterprises, Ministry of Finance
Committee’s Responsibilities
The court directed the committee to:
- Raise awareness about the national crowdfunding platform for rare diseases.
- Engage PSUs and promote voluntary contributions through CSR funds.
- Ensure effective implementation of NPRD 2021 to achieve its intended outcomes.
- Convene monthly meetings to review progress and address challenges.
Court’s Conclusion
While the bench did not accept all suggestions proposed by the petitioner, it emphasized that establishing such a committee would be “salutary and necessary” for ensuring accountability and better coordination among government departments.
This decision marks a crucial step towards supporting patients battling rare and costly diseases through transparent and organized crowdfunding mechanisms.
