SAURABH KUMAR SINGH Vs. THE STATE OF JHARKHAND

JUDGEMENT

(1.) The present writ petition has been filed for issuance of direction to the respondents to provide Enzyme Replacement Therapy, free of cost to the petitioner's son namely "Saurya Singh" aged about 5-6 years, who is suffering from rare congenital/genetic disease of MPS II (Hunter Syndrome).

(2.) Learned counsel for the petitioner submits that the petitioner's son namely "Saurya Singh" is suffering from rare disease MPS II (Hunter Syndrome), which is caused due to lack of iduronate Salfatase enzyme in the human body. The said disease was diagnosed, when on the recommendation of the doctors of Christian Medical College, Vellore, the petitioner took his son to Hyderabad and in the report of SANDOR Laboratory dated 02.07.2014, it was confirmed that the petitioner's son is suffering from the aforesaid rare disease. The said report was also subsequently confirmed by All India Institute of Medical Sciences, New Delhi vide doctor's prescription dated 29.09.2014. The petitioner being a permanent resident of Ranchi, consulted the doctors at Rajendra Institution of Medical Sciences (hereinafter referred as RIMS), Ranchi for treatment of his son and after verifying the previous medical reports, the doctors of RIMS started the treatment for MPS II (Hunter Syndrome). The petitioner being a member of middle class family having an annual income of Rs. 5 Lakh is unable to provide such an expensive treatment to his son. As such, he sent representation to the Hon'ble Prime Minister of India vide his letter dated 17.09.2014 and also to the Hon'ble Chief Minister of Jharkhand vide his letter dated 14.05.2015 to provide government medical aid for treatment of his son. He subsequently vide letter dated 25.07.2015 addressed to Principal Secretary, Health and Family Welfare Department, Government of Jharkhand (the respondent no. 3), requesting to provide medical help to his son. Thereafter, the Civil Surgeon-cum-Chief Medical Officer, Ranchi vide letter no. 226 dated 14.09.2015 informed the petitioner that his application for treatment of rare disease i.e. MPS II (Hunter Syndrome) could not be considered due to the reason that the BPL Certificate was not annexed with the said application as well as the disease i.e. MPS II (Hunter Syndrome) has not been mentioned as rare disease in the list available in the department. Another application of the petitioner sent through an N.G.O. namely "Lysosomal Storage Disorders Support Society" was also rejected by the Civil Surgeon-cum-Chief Medical Officer, Ranchi vide his letter contained in memo no. 544 dated 21.12.2016 on the same ground.

(3.) A counter affidavit has been filed on behalf of the Union of India through respondent no. 5 wherein it has been stated that the Ministry of Health and Family Welfare, Government of India, is already defending 12 other similar cases filed for identical benefits in the Hon'ble Delhi High Court. During the combined hearing of all these cases, the Hon'ble Delhi High Court issued a direction to the Government of India to immediately frame a National Policy for Treatment of Rare Diseases in India under which such patients would be treated. Accordingly, the Ministry of Health and Family Welfare, Government of India, set up High Level Technical Inter Disciplinary Committees consisting of experts in the field, to recommend a comprehensive policy draft to the Ministry of Health and Family Welfare. The Ministry, on the basis of recommendation of these committees, has already framed a National Policy for Treatment of Rare Diseases, 2017 which has been sent to all States and the Union Territories for taking necessary action at their end as stipulated in the said Policy. As per the Policy, the approved cost of treatment for rare diseases will be shared by the Centre and the States in a 60:40 ratio. The States have also to identify at least one hospital in every State for treatment of rare diseases and the State Level Technical Committee has to examine the cases and send its recommendations to the Central Technical Committee, which has already been constituted in the Ministry of Health and Family Welfare, for consideration. The Central Technical Committee will examine the cases received from the State Level Committees and the decision/approval of the Central Committee will be conveyed to the State. The State Government will then seek 60% of the total approved cost from the Centre through their State Programme Implementation Plan under the National Health Mission. The Central Government has already approved a corpus with Rs. 100 crores for the said purpose. There is no provision in the Policy to provide direct financial assistance to any patient and the same will be provided as per the National Policy for Treatment of Rare Diseases, 2017.