NEW DELHI: A leading patient group and families of children with ultra-rare diseases across India have appealed to Prime Minister Narendra Modi to direct the Union Health Ministry to urgently implement the Delhi High Court order, which recommended establishing a National Fund for Rare Diseases (NFRD) so that dozens of children and young adults, who are on the brink of losing their lives, are not denied treatment.

The ‘cry for justice’ appeal, which was also addressed to Chief Justice of India, BR Gavai, urged him to list and expeditiously hear the pending Special Leave Petition (SLP) in the Supreme Court and to restore the October 4, 2024, order of the Delhi High Court in full.

In a landmark decision, the Delhi High Court directed the centre to establish the NFRD with an allocation of Rs 974 crore and to ensure uninterrupted therapy for patients with rare diseases. However, the Union Health and Family Welfare Ministry filed an SLP before the Supreme Court, which is still pending.

According to Manjit Singh, National President, Lysosomal Storage Disorders Support Society (LSDSS), who wrote the appeal to the prime minister and the CJI, on behalf of patient groups and families of children with ultra-rare diseases across India, the SLP is pending before the SC, thus halting relief for patients.

“The matter has remained pending for nearly a year while lives continue to be lost. Each week of delay is another irreversible loss. We are not asking for sympathy - we are asking for the implementation of the High Court’s order that upholds our children’s right to live with dignity,” he added. The case is listed in the apex court for November 7.

“The lack of timely central funding has forced the treatment discontinuation for over 55 patients located in Kerala, Tamil Nadu, West Bengal, Delhi, and Karnataka. This crisis is worsening, with a growing number of patients expected to lose access to care as the delay continues,” said the national patient groups.