Supreme Court to hear pleas over ₹50 lakh cap on Centre aid for rare diseases
The Supreme Court of India has decided to hear pleas challenging the ₹50 lakh cap on central assistance for treating patients with rare diseases, such as spinal muscular atrophy (SMA). This decision comes after several appeals, notably the case of Seba PA from Kerala, who suffers from SMA and requires the expensive drug Risdiplam, priced at ₹6.2 lakh per bottle.
Seba PA’s Case: Seba PA had approached the Kerala High Court, which directed the Centre to provide additional medication beyond the ₹50 lakh cap. However, the Supreme Court stayed this order after the Centre appealed, citing that it could not be compelled to exceed the cap.
Risdiplam Pricing: The drug manufacturer, F Hoffmann-La Roche Ltd, has agreed to supply Risdiplam for free to Seba for a year. The drug is significantly cheaper in countries like China and Pakistan, prompting questions about why similar price reductions are not possible in India.
Hearing Schedule: The Supreme Court will hear the pleas starting May 13, led by Justice P.S. Narasimha.
Government’s Position: The Centre defends the cap, citing concerns about setting unsustainable financial precedents given the large number of patients with varied conditions.
Potential for Exceptions: The court has suggested that the government consider exceptions on a case-by-case basis, acknowledging the critical nature of these healthcare challenges.
Cost and Accessibility: The high cost of treatments like Risdiplam makes long-term care financially unviable for many patients. The court is examining whether the government could negotiate lower prices or use legal provisions to reduce costs.
International Pricing Disparities: The significant price differences for Risdiplam in neighboring countries have raised questions about why India cannot achieve similar reductions.
The upcoming hearings will delve into the economic and ethical dimensions of healthcare funding for rare diseases, potentially leading to changes in how the government supports patients with these conditions.
