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The Delhi High Court has observed that scarcity of authoritative research does not impinge on the right of the patients to undergo the treatment options, currently available to them and to other similar patients across the globe. 

A Single judge bench of Justice Yashwant Varma was hearing a batch of petitions concerning children with rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's Syndrome, etc. The pleas prayed for directions to provide the children treatment, free of cost, as the medical treatment for such diseases was very expensive. 

The court admitted that there was a lack of research. in the course of treatment, which may establishing long term outcomes of the treatment protocols being followed. However, that would not detract from the right of the patient, to receive such treatment. 

The observations of the court were made after the All India Institute of Medical Sciences (AIIMS) examined the medical records of children suffering from rare diseases. The AIIMS Expert Committee recommendations were placed before the court wherein the committee had opined that the administration of the drugs may help in the decline in cardiac as well as ambulatory functions in some of the Petitioners. 

The Court was further apprised of the issuance of an Office memorandum dated May 19, 2022 in terms of which it has been provided that financial support upto Rs. 50 lakh would be given by the government, under the Umbrella Scheme of Rashtriya Arogya Nidhi, to those who suffer from rare diseases as listed. 

The Court has also directed the competent authority in the Department of Biotechnology to explore other generic forms of treatment that may be under development and may warrant consideration. 

The matter has now been listed for August 5

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