New Delhi : A bench comprising of Chief Justice of India D Y Chandrachud and Justice PS Narasimha of the Supreme Court directed the Ministry of Health and Family Welfare to examine means to improve the conditions of persons suffering from the Chronic Fatigue Syndrome. The issue arose in a petition filed by a person claiming to be suffering from a condition called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a condition recognized by the World Health Organization as a neurological disease since 1969.The grievance of the petitioner was that though a National Policy for Treatment of Rare Diseases was framed in 2017 and later revised in March 2021, no steps had been taken for diagnosing the treatment of the rare disease from which the petitioner suffered.
The petitioner submitted that effective mechanism for diagnoses, assessment, treatment and research of patients suffering from Chronic fatigue syndrome and other Rare Diseases in India were patient’s fundamental rights enshrined in the Constitution of India as per Article 14, 21, 39, 41 and 47. Accordingly, the petition sought for directions to open up the Centre of Excellence (treating hospitals) in all the 28 states and 8 union territories so that it is approachable for every rare disease patient in India. It also requested the court to frame guidelines enforceable in law until suitable legislation is enacted by the State Legislatures/Parliament of India to occupy the field. Finally, the petition sought for the issuance of an order directing the Centre to devise a mechanism to make a wide publicity of rare diseases and to educate the various stake holders so as to find a mechanism of permanent cure for patients suffering from the Chronic Fatigue syndrome and other Rare Diseases in India.
