Jharkhand High Court
Saurabh Kumar Singh vs The State Of Jharkhand Through Chief ... on 8 February, 2018
Author: Rajesh Shankar
Bench: Rajesh Shankar
1
IN THE HIGH COURT OF JHARKHAND AT RANCHI
W.P.(C) No.- 689 of 2017
Saurabh Kumar Singh
Son of Sri Nagendra Singh, resident of Aishwarya Residency, D/4,
Road No. 4 Dipatoli, PO & PS- Pundag, District- Ranchi
...Petitioner
-V e r s u s-
1. The State of Jharkhand through Chief Secretary, Government of
Jharkhand, Project Building, PO Dhurwa, PS- Jagannathpur,
District- Ranchi
2. The Chief Secretary, Government of Jharkhand, Project building,
PO Dhurwa, PS- Jagannathpur, District- Ranchi
3. The Principal Secretary, Department of Health and Family Welfare
Department, Government of Jharkhand, Nepal House, Ranchi
4. The Chief Medical Officer, Ranchi
5. Union of India, through its Secretary, Health and Family
Welfare Department, Cabinet Secretariat, Raisena Hills, New
Delhi
.... Respondents
CORAM: - HON'BLE MR. JUSTICE RAJESH SHANKAR For the Petitioner :- Mr. Aashish Kumar, Advocate Mr. K.K.Bhatt, Advocate For the State :- Mr. Srijit Choudhary, Sr. SC-III Mr. Kaustav Roy, J.C. to Sr. SC-III Order No.-15 Dated: 08.02.2018 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 2 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.
33. 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 & 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 4 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.
4. Pursuant to filing of the counter affidavit by the respondent no. 5 taking aforesaid stand, this Court vide order dated 13.12.2017 directed the respondent no. 3 to file his personal affidavit with regard to the implementation of National Policy for Treatment of Rare Diseases, 2017, in the State of Jharkhand. In compliance of the said order, the respondent no.3 has filed a supplementary counter affidavit stating inter alia that in compliance of the order dated 13.12.2017, the respondent no.3 has constituted a Committee namely State Level Technical-cum-Administrative Committee on 29.12.2017. A copy of notification has been annexed with the said supplementary counter affidavit dated 08.01.2018. It has also been stated inter alia that RIMS, Ranchi has been nominated by the respondent no.3 as the hospital for treatment of rare diseases in the State of Jharkhand. It has also been averred that as per Clause 4.3.1(o) of the National Policy for Treatment of Rare Diseases, 2017, the respondent no. 3 is making provision for creation of the State Level Corpus fund of Rs.2 crores for the financial year 2018-19 for treatment of rare diseases.
5. Having heard the learned counsel for the parties and considering the stand taken by the respondent no. 5 as well as the respondent no. 3, the State Level Technical-cum- Administrative Committee is directed to examine the petitioner's son within a period of one week from the date of receipt/production of copy of the order and send recommendation to the Central Technical Committee, 5 constituted by the Ministry of Health & Family Welfare, Government of India. The Central Technical Committee, on receipt of such recommendation of the State Level Technical- cum-Administrative Committee, is directed to examine the matter and convey its decision/approval to the respondent no.3 within 15 days thereafter. The procedure for seeking 60 % of the approved cost from the Central Government is to be undertaken by the respondent no. 3 within a period of 15 days thereafter. As the respondent no.3 has stated in his supplementary counter affidavit dated 08.01.2018 that the creation of State Level Corpus Fund of Rs. 2 crores for the financial year 2018-19 is already under way, the respondent no. 3 shall also ensure release of 40% of the State share as per the National Policy for Treatment of Rare Diseases, 2017, within the aforesaid period.
6. It has been informed to the Court by the learned counsel for the petitioner that the health condition of the petitioner's son "Saurya Singh" has been deteriorating day-by-day and if financial assistance as provided under National Policy for Treatment of Rare Diseases, 2017, is not rendered to him in time, he may not survive to avail the benefits of the said Policy.
7. One should not be unmindful of the fact that the purpose of framing a policy must be achieved and benefit derived from the same should reach the beneficiary in time, otherwise, the purpose of policy itself gets defeated. The State machineries must ensure that the policy should be promptly executed so that the needy gets the benefit in due manner and in time.
8. The Hon'ble Supreme Court in a judgment rendered in the case of Pramila Suman Singh v. State of Maharashtra, reported in (2009) 2 SCC 729 while emphasizing sincere and 6 timely implementation of government policies, has held as under:
"61. Mr Diwan is further correct in his submission that the Authority having a statutory status should have considered the application filed by the appellant at an early date. We fail to understand that if the policy of the State as also the Authority was to see that slum dwellers should be rehabilitated and all modern facilities are made available to them so as to make the city of Bombay a planned one, why Respondent 6's application was kept pending since 1995 and it was permitted to deposit the scrutiny fee only in the year 2004 i.e. much after the scrutiny fee deposited by the appellant. It is also beyond our comprehension as to why no action had been taken against Respondent 6 by the Municipal Authority for its inaction for such a long time. If the Scheme was to be implemented with sincerity as the policy decision professes, it was imperative for all the statutory authorities to take appropriate action within a reasonable time. Keeping in view the fate of a large number of people, hanging for a long time at the hands of the statutory authority, the same itself may be held to be unreasonable so as to attract the wrath of Article 14 of the Constitution of India."
9. The Hon'ble Apex Court in the case of Priya Gupta v. State of Chhattisgarh, reported in (2012) 7 SCC 433, has held thus :
"45. The maxim boni judicis est causas litium dirimere places an obligation upon the Court to ensure that it resolves the causes of litigation in the country. Thus, the need of the hour is that binding dicta be prescribed and statutory regulations be enforced, so that all concerned are mandatorily required to implement the time schedule in its true spirit and substance. It is difficult and not even advisable to keep some windows open to meet a particular situation of exception, as it may pose impediments to the smooth implementation of laws and defeat the very object of the scheme. These schedules have been prescribed upon serious consideration by all concerned. They are to be applied stricto sensu and cannot be moulded to suit the convenience of some economic or other interest of any institution, especially, in a manner that is bound to result in compromise of the abovestated principles."7
10. A Division Bench of Gujarat High Court in a judgment rendered in the case of Biomedical Lifescience Pvt. Ltd. & Others Vs. Union of India through Secretary, Ministry of Commerce & Others, in Special Civil Application no. 963 of 2013, held as under:
"45. In our opinion, having regard to the Statement of Objects and Reasons, which we have quoted earlier, the intention of the Legislature in providing such a deeming fiction is to see that without there being any inordinate delay, the entrepreneur must implement the project and commence the production so that a project in a Special Economic Zone is able to attract large flow of foreign and domestic investment leading to generation of additional economic activity and creation of employment opportunities. By keeping a plot open and not availing of the benefits as provided in the Act 2005, the whole purpose for which the plot is allotted would be frustrated."
11. Thus, considering the critical health condition of the petitioner's son, it is joint responsibility of the respondent no.3 as well as the respondent no. 5 to ensure that the financial assistance under National Policy for Treatment of Rare Diseases, 2017 is rendered to the petitioner's son promptly in time to fight against the rare congenital/genetic disease i.e. MPS II (Hunter Syndrome).
12. The writ petition is accordingly disposed of with the aforesaid observation.
(Rajesh Shankar, J.) Ritesh/ A.F.R