MOHD. AHMED Vs. UNION OF INDIA

JUDGEMENT

(1.) Ms. Shyel Trehan, learned Amicus Curiae states that Gaucher disease from which the petitioner-minor child suffers, is a rare chronic disease which worldwide is known as an Orphan disease. She states that, according to her research, only about 200 known cases of this disease have been diagnosed in India so far. She states that the monthly expenditure to be incurred on the treatment of this disease is in excess of Rs. 6,00,000/-. Ms. Trehan also points out that in United States there is a specific legislation known as Orphan Drug Act which provides incentive to pharmaceutical companies to undertake research and development work in the field of rare orphan diseases. She, however, states that there is no such act, or even a policy, in India.

(2.) Ms. Maneesha Dhir, learned Counsel for respondent No. 4-Ministry of Corporate Affairs states that Section 135 of the Companies Act, 2013 which deals with corporate social responsibility has not been notified till date. She also states that comments to the draft rules under the said Provisions are still awaited.

(3.) Having heard the parties this Court is of the opinion that the Right to Life as enumerated in Article 21 of the Constitution of India has to be interpreted in its widest amplitude. The Apex Court in various decisions has given a liberal and multi-dimensional meaning to the expression 'life and personal liberty'. The Supreme Court in Parmanand Katara v. Union of India, 1989 4 SCC 286, has held as under: