The Supreme Court of India has agreed to examine the petitions challenging the government-imposed Rs 50 lakh cap on aid for the treatment of rare diseases. This decision follows appeals concerning the financial limits on healthcare support for conditions such as spinal muscular atrophy (SMA). The case will be heard by a bench led by Justice P.S. Narasimha starting May 13.
The matter was brought into prominence by the case of 24-year-old Seba PA from Kerala, who suffers from SMA and requires the drug Risdiplam, which costs Rs 6.2 lakh per bottle. M/s F Hoffmann-La Roche Ltd, the pharmaceutical company behind Risdiplam, agreed to provide the drug for free for a year to Seba following directives from the Kerala High Court. The high court had previously instructed the Centre to extend an additional Rs 18 lakh worth of medication, surpassing the established cap.
In February, the Supreme Court stayed the Kerala High Court’s directive after the Centre appealed, arguing that it could not be compelled to exceed the Rs 50 lakh threshold. The apex court subsequently noted the substantial treatment costs for SMA, potentially amounting to Rs 26 crore, and highlighted the lower pricing of Risdiplam in countries like Pakistan and China.
During the latest hearing, Chief Justice Sanjiv Khanna, along with Justice Sanjay Kumar, reviewed confidential pricing details provided by the drug manufacturer, acknowledging the efforts of the National Rare Diseases Committee to negotiate lower prices within India. However, CJI Khanna remarked on the complexities of government pricing policies, hinting at broader international consequences.
Senior Advocate Anand Grover, representing Seba, pointed out the significant price disparities for the medication in neighboring countries and questioned why similar reductions were not achievable in India. The bench expressed openness to revisiting the government’s pricing strategy but highlighted potential global implications.
The central government’s current policy allows up to Rs 50 lakh for treatment per needy patient. However, this cap has sparked debates over the feasibility of providing adequate care under such financial constraints, especially given the high costs associated with rare disease treatments.
The Centre has defended its position, citing the risk of setting a precedent that could lead to unsustainable financial demands, given the thousands of patients with varied conditions across India. Nonetheless, the bench has urged the government to consider allowing exceptions to the cap on a case-by-case basis, reflecting the critical nature of these healthcare challenges.
The hearings in May are anticipated to delve deeper into the economic and ethical dimensions of healthcare funding for rare diseases, potentially reshaping how the government supports some of its most vulnerable citizens.
