New Delhi: In a significant development for the healthcare sector in the country, the Delhi High Court has directed the Central Government to set up the National Rare Disease Fund (NRDF) saying that the right to health is an integral part of the right to life.
Justice Prathiba M Singh, while disposing of a batch of more than 100 petitions filed on behalf of patients suffering from rare diseases on Friday directed the Central Government to set up the NRDF for which Rs 974 crore will be allocated.
The bench said that the fund should be used for the treatment of persons suffering from rare diseases. The court also directed that the distribution of this amount will be monitored on a monthly basis to check if there are any delays. The first meeting should be scheduled within 30 days, the court said.
The High Court directed that the National Rare Disease Committee constituted on May 25, 2023 will continue to function for the next five years. The High Court said in its order on Friday that "the Central Government shall create a National Fund for Rare Diseases and a fund of Rs 974 crore shall be created as per the recommendation of the NRDC and pending approval of the Ministry of Health, shall be allocated for the years 2024-25 and 2025-26".
Delivering its verdict on 105 petitions, the High Court said that all patients suffering from rare diseases should be provided treatment and medicines adding the funds will not lapse or be refunded if not used. The High Court was hearing petitions seeking free treatment for patients suffering from rare diseases.
Justice Singh expressed confidence that once the fund is created, efforts will be made to reduce the prices of medicines and make them more accessible in the next few years. The court passed this order while disposing of 105 petitions related to the treatment of children suffering from rare diseases like Duchenne Muscular Dystrophy and Hunter Syndrome. The petitions demanded free treatment for the patients, which is otherwise very expensive. The court has been passing various orders on the petitions from time to time since 2020.
Read more:
