In a significant decision, the Delhi High Court has directed the establishment of a National Rare Disease Fund (NRDF) with an allocation of Rs. 974 crore to aid patients suffering from rare diseases. This ruling came as the court addressed over 100 petitions filed on behalf of patients struggling with such conditions, reaffirming that the right to health is an integral part of the right to life.
On Friday, the High Court ordered the central government to create the NRDF, stressing that the fund should exclusively be used for treating individuals with rare diseases. The court also mandated monthly monitoring of fund distribution to prevent delays and specified that the first meeting regarding the fund’s administration should occur within 30 days.
The directive follows deliberations over multiple petitions advocating for the free treatment and medication for patients with rare diseases. The High Court emphasized that unused funds should not lapse but be carried forward, ensuring continuous support for affected patients.
Justice Singh, presiding over the case, expressed confidence that once the fund is established, efforts would be made in the coming years to reduce the costs of medications and make them more accessible. The court’s decision aims to address the high costs associated with treating rare diseases such as Duchenne Muscular Dystrophy and Hunter Syndrome, providing significant financial relief to affected families.
In 2020, the court began issuing various orders regarding these petitions, which culminated in the recent comprehensive ruling.
This decision marks a critical step in addressing the challenges faced by patients with rare diseases in India. By establishing a dedicated fund and ensuring its meticulous management, the Delhi High Court has set a precedent for other jurisdictions to follow, potentially changing the landscape of healthcare for rare diseases across the nation.
The NRDF not only aims to alleviate the financial burden on patients and their families but also to enhance the availability and affordability of necessary treatments. This initiative is expected to bring about significant improvements in the quality of life for many patients, giving them access to treatments that were previously unaffordable or inaccessible.
