Rare disease patients write to CJI, seek assurance of sustainable funding in upcoming SC hearing

New Delhi, Nov 5 (PTI) Rare disease patients and their advocacy groups from across the country have written to Chief Justice of India B R Gavai and Prime Minister Narendra Modi on behalf of children and young adults on the brink of losing their lives to ensure sustainable funding in the upcoming Supreme Court hearing on November 7.

Hundreds of children are being denied treatment due to administrative delays and the restrictive one-time funding limit under the National Policy for Rare Diseases (NPRD) 2021, they said in the letter.

According to the policy, financial assistance of up to Rs 50 lakh per patient is provided for the treatment of identified rare diseases. This support is provided to patients registered with any of the 12 identified centres of excellence across the country for their treatment.

"In the past two years alone, nearly 60 patients have died after exhausting the Rs 50 lakh funding cap and over 55 others remain untreated for months despite being registered at centres of excellence and eligible for approved life-saving therapies. Without urgent intervention, this number will exceed 100 by year-end," the letter said.

The Delhi High Court in its order on October 4 last year that a 'National Fund for Rare Diseases' be established with an allocation of Rs 974 crore to remove the ceiling and ensure uninterrupted therapy, it said.

Instead of implementing this order, the health ministry filed a special leave petition before, halting relief for patients, the letter added.

The matter has remained pending for nearly a year while lives continue to be lost, the letter rued.

Noting that each week of delay is another irreversible loss, Manjit Singh, national president of Lysosomal Storage Disorders Support Society of India (LSDSS), said, "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." Jayanta Mudi, father of Gaucher patient Adrija (6) from Kolkata, said, "My daughter's health had improved remarkably when she was on therapy. Since treatment stopped, she has been deteriorating each day. Our children deserve a chance to live." Abul Kalam, father of Abdul Rehman (10) from Delhi, added, "My son's therapy stopped in September 2024. His condition is worsening, and we are helpless as the proceedings drag on. We only seek a chance for our children to live." Raja Murugappan, member of the Rare Diseases Support Society, Tamil Nadu, emphasised, "The Rs 50 lakh limit was never meant to be a death sentence. We appeal to the Supreme Court and the Prime Minister to uphold the hope these families still hold." They had appealed for immediate listing and expeditious hearing of the pending SLP in the Supreme Court and restoration of the Delhi High Court's order in full and immediate restoration of treatment for those who have exhausted their one-time support. PTI PLB SHS ZMN