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Delhi High Court Orders Creation of National Rare Diseases Fund and Key Reforms for Patient Treatment

NextEdge Admin

06 Oct 2024

2 min 40 sec

rare diseases,National Rare Disease Committee,policies

The Delhi High Court has ordered the Centre to establish a “national rare diseases fund” to ensure proper treatment for patients suffering from rare diseases. The court, led by Justice Prathiba M. Singh, instructed that monthly meetings be held to monitor the fund’s disbursement, with the first meeting to occur within 30 days to address any delays. The court also extended the term of the National Rare Disease Committee (NRDC) by five years, allowing it to continue overseeing the implementation of rare disease policies and treatment efforts across India. This committee was originally formed in 2023 by the court.

The court allocated Rs 974 crore for the financial years 2024-25 and 2025-26, based on the NRDC’s recommendations, pending approval from the Ministry of Health. The judgment comes as part of a resolution to 105 petitions filed since 2020, primarily seeking free treatment for children with rare diseases, as the therapies are often prohibitively expensive. Justice Singh emphasized that the right to health, guaranteed under Article 21 of the Constitution, must equally apply to patients with rare diseases.

In her ruling, Justice Singh issued several key directives, including the creation of a centralized Rare Disease Information Portal within three months and a Fast Track approval process for rare disease drugs, to be completed within 60 days. The court also mandated that waivers on GST, customs duties, and tax exemptions for rare disease treatments be issued within 30 days. Additionally, the Drug Controller General of India (DCGI) and the Central Drugs Standard Control Organization (CDSCO) are tasked with monitoring clinical trials to enroll more patients and expedite treatment approvals.