Delhi High Court directs Union to release of Rs. 5 crores to AIIMS, Delhi for treatment of children suffering from Rare Diseases

Delhi High Court

Delhi High Court: In a petition filed by the petitioners who are mostly children suffering from Rare Diseases claiming that medicines and therapies for the said diseases are exorbitantly expensive, Prathiba M Singh, J., directed that a sum of Rs.5 crores shall be immediately released by the Union of India to AIIMS, Delhi to ensure that the treatment of children, where it has already commenced, is not stopped due to lack of funds.

On the last date of hearing, the Court had directed Ms. Alka Sharma, Managing Director, BIRAC and Mr. Rajesh Gokhale, or any senior official from the Department of Biotechnology (DBT) nominated by Mr. Gokhale, to hold a meeting with the representatives of Hanugen to explore the framework under which funding for clinical study for therapeutic evaluation of indigenous treatment in respect of DMD patients can be done.

A perusal of the minutes shows that BIRAC is bound by the Biotechnology Industry Partnership Programme (BIPP) under which the Grant-in-aid Letter Agreement was entered into with Hanugen Therapeutics Pvt. Ltd. The stand taken by BIRAC is that it is mandatory for Hanugen to contribute 50% of the total project cost.

Thus, the Court opined that the matter would have to be now referred to the Secretary, Ministry of Health and Family Welfare (MH&FW) to take a decision in respect of clinical trials that are to be conducted for testing the therapies for rare diseases including DMD.

The Court directed that each of the petitioners may approach AIIMS, New Delhi, or the respective Centres of Excellence, closer to their locations, for the commencement of their treatment in terms of the order dated 14-12-2021 wherein it was stated as under:

The direction to AIIMS and the other Centres of Excellence to commence treatment of these children would also include a direction to them to provide the necessary medicines to these children, the cost whereof will be borne by the Union of India. It will be the responsibility of the Union of India to ensure that necessary funds are provided to all the Centres of Excellence including AIIMS as and when demanded.

The Court was informed that ‘Sarepta’ has registered for clinical trials in India for the same medicines which are being procured by AIIMS. Furthermore, AIIMS Delhi is stated to be one of the centres of Sarepta’s clinical trial.

The Court directed DCGI to file an affidavit regarding details of Sarepta’s trial or any other trial which has been approved by it in respect of DMD, Gaucher, or Hunter’s Syndrome therapies.

In one of the petitions filed by Ms. Alishba Khan, who is suffering from Gaucher alleging that the medicines were being provided by AIIMS till January, 2023 but suddenly the treatment stopped by AIIMS.

Counsel for AIIMS submitted that the treatment had to be stopped as the funds received in respect of the said patient were exhausted.

The Court noted that AIIMS, Delhi is recognised as a Centre of Excellence for treating rare diseases and is also the nodal center of the Consortium of Centers of Excellence under the National Policy for Rare Diseases, 2021.

Considering the large number of patients who have filed petitions before the court, for whom medicines are needed, the court directed a sum of Rs. 5 crores to be immediately released by the Union of India to AIIMS, Delhi so as to ensure that the treatment of children, where it has already commenced, is not stopped due to lack of funds.

[Master Medhansh Jhawar v Rajesh Bhushan, 2023 SCC OnLine Del 899, decided on 15-02-2023]

Advocates who appeared in this case :

Mr. Rahul Malhotra, Advocate. Ms. Shyel Trehan, Amicus Curiae with Mr. Rohan Poddar, Advocate for the Petitioner;

Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI;

Mr. Tanveer Oberoi and Mr. Jaswinder Singh, Advocate for the Respondent.

*Arunima Bose, Editorial Assistant has reported this brief.

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