Supreme Court Urges Union To Negotiate With Pharma Companies To Procure Medicines For Rare Diseases At Low Cost

The Supreme Court yesterday (February 24) stayed the order of the Kerala High Court which directed the Union to procure medicines worth 18 Lakh for treatment of the rare disease- Spinal Muscular Atrophy as a one-time measure. The Court also asked the Union to explore possible recourse to subsidize the drugs.

The bench of CJI Sanjiv Khanna and Justice Sanjay Kumar was hearing a challenge to the order of the division bench of the Kerala High Court which clarified that the order of a single bench directing the Union to procure expensive drugs for treating a patient with a rare disease - Spinal Muscular Atrophy would not amount to a binding precedent for other similarly situated patients. 

The Kerala High Court was dealing with the plea of a 24-year old suffering from Spinal Muscular Atrophy (SMA), against the overpricing of the life-saving medicine, Risdiplam. 

Notably, the Apex Court is at present seized of a batch of petitions filed by parents of children suffering from Muscular Dystrophy (a rare disease) who seek a policy for free treatment of the disease. On December 9, 2024 it also stayed the order of the Delhi High Court which directed the removal of a cap of ₹50 lakhs for the treatment of rare diseases declaring it to be a flexible one.

Yesterday, the Court while issuing notice to the present SLP filed by the Union, stayed the Kerala High Court order. 

"Issue notice returnable in the week commencing 17th of April 2025.....till the next date of hearing there will be a stay of the order of the Impugned judgement." 

Counsel for the respondents informed that Pakistan and China negotiated to bring down the price of the medicines used in the treatment of rare diseases. 

The CJI also asked the parties to explore the possibility of getting in talks directly with the concerned drug manufacturing company. He dictated in the order : 

"We would also ask the petitioners as well as the Union of India to get in touch with the company manufacturing these drugs to enable to treat the patients suffering from the said disease." 

The Court was informed that 900 individuals were similarly suffering from these rare diseases. The CJI verbally expressed the need for the Union to explore international negotiations for more affordable treatment : 

"Find something out, there are 900 people suffering from this disease, the government can also negotiate - I don't know how many doses are required, but maybe the govt. has to negotiate and say  please do it, we keep on paying you so much money, but you take 50 Lakhs for the entire dose, for life long." 

The counsel for the Union however pointed out that these doses are custom-made as per the patient's requirement on a monthly or bi-annually basis. 

The bench consequently allowed the respondents to place on record details of the various other countries which managed to get the rates of the drugs subsidized.

Case Details: UNION OF INDIA vs. SEBA P.A.| SLP(C) No. 004684 - / 2025