Supreme Court to Reassess Rs 50 Lakh Cap on Rare Disease Treatment Funding

The Supreme Court will review the Rs 50 lakh cap on the central government's aid for treating rare diseases like SMA. The high costs of SMA treatment, especially the drug Risdiplam, have raised concerns. A pharma firm has agreed to supply the drug for free to one patient for a year.

The Supreme Court has agreed to revisit the Rs 50 lakh limit set by the central government for financial assistance to patients with rare diseases such as spinal muscular atrophy (SMA). The decision follows pleas highlighting the exorbitant costs of treatment, particularly the SMA drug Risdiplam.

Manufactured by the pharmaceutical company M/s F Hoffmann-La Roche Ltd, Risdiplam is priced at Rs 6.2 lakh per bottle in India. The firm has consented to supply the medicine free for a year to Seba PA, a 24-year-old SMA patient from Kerala. Previously, the Kerala High Court ordered the Centre to provide additional funds for her treatment. The Supreme Court has since stayed this order.

The apex court has acknowledged the financial strain posed by SMA treatment, which can cost up to Rs 26 crore. Discussions are underway about whether the drug's price could be reduced in India, as it is sold more cheaply in neighboring countries. The Centre, however, remains constrained by international considerations and fiscal limitations.

(With inputs from agencies.)