The Supreme Court has stayed in the interim a Kerala
High Court order directing the Centre to provide an additional Rs 18 lakh worth
of medicines to a patient suffering from spinal muscular atrophy, beyond its Rs
50 lakh cap.
A bench comprising Chief Justice Sanjiv Khanna and
Justice Sanjay Kumar on February 24 issued notice to the respondents on
Centre's plea.
"Issue notice returnable in the week commencing
April 17, 2025... till the next date of hearing, there will be a stay of the
order of the impugned judgment." Spinal muscular atrophy (SMA) is a
rare genetic disorder characterised by progressive muscle weakness and wasting,
affecting the nerve cells responsible for controlling voluntary muscle
movement.
Under the policy, Centre can provide Rs 50 lakh for
treatment to a needy patient.
The high court on February 6 instructed that the SMA
drug Risdiplam should be provided as a one-time measure to ensure continued
treatment for 24-year-old Seba PA till the matter over its high pricing was
addressed by a single-judge bench -- a process expected to take at least a
month.
Seba's plea before the high court highlighted the
exorbitant cost of Risdiplam, priced at Rs 6.2 lakh a bottle.
Patients weighing up to 20 kilogram require one
bottle a month whereas heavier patients may need up to three bottles, making
long-term treatment financially unfeasible.
The Centre argued while the high court had clarified
its ruling was not a binding precedent, granting individual exceptions could
set one by default.
"There are more than 3,000 patients across
India with varying facts and circumstances and if each case were considered
unique, it could create an unsustainable financial burden," it added.
The Centre's counsel said the government policy set
a firm cap at Rs 50 lakh for all patients, regardless of available resources.
Senior advocate Anand Grover, appearing for Seba,
said the government could have taken steps to reduce the cost of SMA treatment
by either negotiating with the drug manufacturer or invoking provisions under
the Patents Act, 1970.
Grover said countries like China and Pakistan had
successfully negotiated with the manufacturer to lower the price of SMA
treatment and questioned why India had not taken similar steps.
The bench, however, suggested that the Indian
government might be refraining from such measures due to "international
ramifications".
"Why would the Indian government not be
interested? They will be very much interested. It's easy to be critical on
that. They would have tried their level best to get the prices down," the
bench said.
The bench asked the Centre to explore the
possibility of approving expenditures beyond Rs 50 lakh on a case-by-case
basis.