Madhya Pradesh High Court Orders Centre, State to Bridge Rs 1 Crore Gap for Child's SMA Treatment

• A minor girl in Madhya Pradesh is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder.
• The total cost of the life-saving injection needed by the child is Rs 9.55 crore, with a significant shortfall of approximately Rs 1 crore despite government aid and crowdfunded contributions.
• The Madhya Pradesh High Court has directed the Union and State governments to explore additional financial assistance for the child's treatment.

The court has asked the Union government to examine whether such cases can be treated as exceptional ones warranting additional financial assistance of around Rs 1 crore.

A minor girl in Madhya Pradesh is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder that affects voluntary muscle movement. The treatment for SMA involves specialized injections, which are extremely costly. The total cost of the life-saving injection needed by the child is Rs 9.55 crore. Despite government aid and crowdfunded contributions totaling around Rs 8 crore, there remains a significant shortfall of approximately Rs 1 crore. The Madhya Pradesh High Court has intervened in the matter, directing the Union and State governments to explore additional financial assistance for the child's treatment.

The court's direction is based on the Centre's scheme for financial assistance to persons suffering from rare diseases. Under this scheme, the prescribed limit for financial aid is Rs 50 lakh. However, for Group 3 diseases like Spinal Muscular Atrophy (SMA), this cap has been made flexible with the establishment of the National Fund for Rare Diseases (NFRD) following a Delhi High Court order in October 2024, allowing for further financial assistance in exceptional cases. The Madhya Pradesh High Court has asked the Union government to examine whether such cases can be treated as exceptional ones warranting additional financial assistance of around Rs 1 crore. Meanwhile, the State government has been left open to find ways to provide some financial assistance for the child.

This development highlights the need for lawyers and compliance officers to be aware of financial assistance schemes available for individuals suffering from rare diseases in India. The case also underscores the challenges faced by families with limited resources when dealing with high-cost treatments like SMA. The court's direction may pave the way for further financial assistance, ensuring that the child receives the necessary treatment at the earliest.

This development highlights the need for lawyers and compliance officers to be aware of the financial assistance schemes available for individuals suffering from rare diseases in India, particularly when dealing with high-cost treatments like SMA. They should also note that courts may consider exceptional cases warranting further financial assistance beyond the prescribed limits.

Source: Original reporting via The New Indian Express