Rajasthan High Court - Jaipur
Zamil Son Of Ismile vs State Of Rajasthan on 20 December, 2021
Bench: Manindra Mohan Shrivastava, Vinod Kumar Bharwani
HIGH COURT OF JUDICATURE FOR RAJASTHAN
BENCH AT JAIPUR
D.B. Civil Writ Petition No. 17098/2019
Zamil Son Of Ismile
----Petitioner
Versus
State Of Rajasthan
----Respondent
Connected With D.B. Civil Contempt Petition No. 803/2020 Zamil S/o Shri Ismile,
----Petitioner Versus Rajiv Swaroop Chief Secretary, Government Of Rajasthan,
----Respondent For Petitioner(s) : Mr. Ravi Chirania For Respondent(s) : Mr. M.S. Singhvi, AG assisted by Mr. Siddhant Jain (through V.C.) Dr. V.B. Sharma, AAG Mr. R.D. Rastogi, ASG assisted by Mr. Devesh Yadav (through V.C.) HON'BLE MR. JUSTICE MANINDRA MOHAN SHRIVASTAVA HON'BLE MR. JUSTICE VINOD KUMAR BHARWANI Order 20/12/2021 Heard learned counsel for the petitioner as also learned Advocate General for State and learned Additional Solicitor General for Union of India.
From the efforts which have been made by the State as well as by the Union of India, we find that some development has taken place towards ensuring proper treatment to 28 identified patients/children suffering from Gaucher.
The affidavit filed by the State shows that though some financial support under various schemes is assured, this is not (Downloaded on 21/12/2021 at 09:55:15 PM) (2 of 3) [CW-17098/2019] adequate to meet out the expenses as the cost of treatment of the particular rare disease "Gaucher" is very high which mainly involves import of drugs from abroad.
Learned Additional Solicitor General brought to the notice of this Court, the efforts made by AIIMS, Jodhpur towards opening of Center of Excellence for Rare Diseases and in decision taken and communicated to the Director General, Directorate General of Health Services, Ministry of Health & Family Welfare, Government of India. He would submit that the efforts are on and all attempts are being made to speed up the setting up of the Center of Excellence for Rare Diseases at AIIMS, Jodhpur which is likely to take some time, before such treatment could be provided at Jodhpur also in line with what is presently being provided in S.M.S. Hospital, Jaipur.
Taking into consideration the Government of India's policy, which has been adopted by the State also, particularly with regard to creating fund to facilitate treatment of rare diseases including "Gaucher", we consider it appropriate to direct the State to explore further avenues in line with what has been clearly stated in the Central Government Policy regarding creation of fund by diverting, if necessary, PSU CSR Funds necessary to meet out the urgent situation as on the date towards treatment of identified "Gaucher" patients in the State of Rajasthan.
Learned Advocate General stated that those who are suffering from the disease may contact the Superintendent, S.M.S Hospital, Jaipur for receiving proper treatment and in all such cases as soon as State is informed regarding such admissions by those institutions, all attempts shall be made to provide the (Downloaded on 21/12/2021 at 09:55:15 PM) (3 of 3) [CW-17098/2019] necessary treatment facility including availability of fund for making available costly medicines required for treatment.
On the next date of hearing learned counsel for the State and Union of Indian both may apprise the Court as to what further steps have been taken to meet out the costly treatment of such diseases by implementation of policies which have been framed by the Central Government in this regard and referred to by learned Additional Solicitor General.
We must however, hasten to clarify at this stage that such efforts may go on but to meet out the present situation, all attempts be made by the State to make available funds for proper treatments to identified cases. This Court would be hearing the matters again on 12.01.2022.
List these matters again on 12.01.2022. (VINOD KUMAR BHARWANI),J (MANINDRA MOHAN SHRIVASTAVA),J Arun/Sahil/57-58 (Downloaded on 21/12/2021 at 09:55:15 PM) Powered by TCPDF (www.tcpdf.org)