Explore Possibility Of Procuring Medicine For Spinal Muscular Atrophy At Reasonable Cost: Delhi High Court To National Rare Diseases Committee

The Delhi High Court has directed the National Rare Diseases Committee, constituted by it, to hold deliberations with companies manufacturing and marketing medicines for Spinal Muscular Atrophy, a genetic rare disease, to explore the possibility of procuring the medicines at a reasonable price.

Justice Prathiba M Singh asked the Committee to look into a note submitted by Senior Advocate Anand Grover, who is representing a public charitable trust Cure SMA India, setting out the pricing of medicines for the genetic disease in India and other countries.

The court was hearing a plea moved by FSMA India Charitable Trust in 2017 for making available the medicines and treatment for children suffering with SMA at an affordable price. The Trust was formed by family members of patients suffering from the genetic disease. Cure SMA India was impleaded as one of the respondents in the case after its application for impleadment was allowed on October 11, 2019.

During the hearing on July 21, Grover apprised the court that there are three medicines currently available for SMA which are manufactured by entities namely Biogen, Novartis and Roche.

It was pointed out that the medicine namely Evrysdi-Ridisplam, which is manufactured and marketed by Roche, costs Rs.6,23,000 per bottle in India of which a patient weighing more than 20 kgs would need roughly 36 bottles in a year. However, he contended that the medicine in question is available at a much more reasonable price in other countries such as China and Pakistan.

Perusing the note submitted by Grover, Justice Singh said that there is a possibility of the National Rare Diseases Committee speaking to the manufacturing companies to source medication for SMA patients.

“Accordingly, it is directed that the National Rare Diseases Committee shall look into the note, which has been today submitted by Mr. Anand Grover, ld. Sr. Counsel and invite companies manufacturing and marketing medicines for SMA in order to explore the possibility of procuring the medication at a reasonable cost,” the court said.

Justice Singh also emphasized that effective deliberations between the companies and National Rare Diseases Committee as well as a positive response from the entities would have substantial impact on the lives of children who are suffering from rare diseases.

The court also asked Advocate Pravin Anand, who regularly appears for the pharmaceutical companies and whose assistance was sought in the matter, to seek instructions as to whether the manufacturing companies would be willing to make available medications at reasonable prices for children suffering from rare diseases as part of their overall Corporate Social Responsibility.

“The note, which has been handed over by Mr. Anand Grover shall be placed before the Committee by Mr. Kirtiman Singh’s office. Let a status report be filed by the Committee by the next date of hearing on the progress made by it in negotiation with companies manufacturing and marketing medicines for rare diseases,” the court said while listing the matter for hearing on August 03.

In May, Justice Singh had constituted a five-member committee so that the National Policy for Treatment of Rare Diseases, 2017 can be implemented in an efficient manner and also to ensure that its benefits reach the ultimate patients.

The court has been hearing a bunch of pleas concerning the treatment of children suffering from rare diseases like Duchenne Muscular Dystrophy and Hunter's syndrome. The petitions seek free-of-cost treatment for the patients, which is otherwise very expensive.

Title: FSMA INDIA CHARITABLE TRUST v. UNION OF INDIA AND ANR.

Citation: 2023 LiveLaw (Del) 626

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