Custom Duties, Charges Not To Be Levied On Medicines For Rare Diseases: Delhi High Court

The Delhi High Court has clarified that custom duties and charges shall not be levied on medicines, drugs and therapies for rare diseases.

Justice Prathiba M Singh took note of the gazette notification issued by the Union Ministry of Finance on March 29 last year under the Customs Act, 1962, which included drugs, medicines or food for special medical purposes used for treatment of rare diseases.

“Thus, in addition to the above Press Release issued by the Ministry of Finance, and the gazette notification, it is hereby clarified that custom duties and charges shall not be levied on medicines, drugs and therapies for rare diseases,” the court said.

It added that whenever medicines are brought in respect of rare diseases, the custom authorities shall ensure that the same are cleared expeditiously and no unnecessary impediments are caused in ensuring that the same reach the concerned hospital.

“Let the present order be communicated to Central Board of Indirect Taxes and Customs ('CBIC') for compliance by the Registry, as also through ld. CGSC Mr. Kirtiman Singh,” the court ordered.

The matter will now be heard on March 22.

Justice Singh passed the order while dealing with a batch 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. The court has been passing various orders in the pleas from time to time, since 2020.

In November last year, the court had directed the All India Institute of Medical Sciences (AIIMS) to commence the process of procurement of medicines for children with rare diseases, for whom evaluations have been completed and who are amenable to treatment, as per the fund of Rs. 50 lakhs allocated per patient in terms of the Rare Diseases Policy.

The court had earlier 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.

In May last year, 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.

Case Title: Master Arnesh Shaw v. Union of India & Anr.

Citation: 2024 LiveLaw (Del) 253

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