MASTER ARNESH SHAW Vs. UNION OF INDIA

JUDGEMENT

(1.) The Petitioners in these cases, who are mostly children, are suffering from the following Rare Diseases:

(2.) It is the case of the Petitioners that the medicines and therapies for all these Rare Diseases are exorbitantly expensive, and directions ought to be issued to the Respondents i.e., the Union of India and its Ministry of Health and Family Welfare, All India Institute of Medical Science (hereinafter, "AIIMS"), as well as the GNCTD, to provide continuous and uninterrupted treatment to the Petitioners, free of cost.

(3.) On 17th August, 2020, notice was issued in WP(C) 5315/2020, to the Respondent- Union of India, and a counter affidavit had initially been called for from the Union of India. An affidavit was placed on record in W.P.(C) 5315/2020 stating that various health policies are under consideration by the Union of India, in respect of such Rare Diseases. As per the said affidavit, a Draft National Policy for Rare Diseases has been released by the Government in 2020, which was in the stage of consultation. The said draft policy of 2020 was preceded by an earlier policy of 2017 which was kept in abeyance vide notification dated 18th December, 2018.