Rajasthan High Court - Jaipur
Zamil Son Of Ismile vs State Of Rajasthan on 28 October, 2021
Bench: Manindra Mohan Shrivastava, Farjand Ali
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 and ors.
----Respondents
Connected With D.B. Civil Contempt Petition No. 803/2020 Zamil S/o Shri Ismile,
----Petitioner Versus Rajiv Swaroop Chief Secretary, Government Of Rajasthan and ors.
----Respondents For Petitioner(s) : Mr. B.C. Chirania, Mr. Ravi Chirania, Mr. Mukesh Kumar Verma For Respondent(s) : Mr. R.D. Rastogi, ASG with Mr. Akshay Bhardwaj for the UOI through Video Conferencing Dr. V.B. Sharma, AAG with Mr. Avinash Choudhary HON'BLE MR. JUSTICE MANINDRA MOHAN SHRIVASTAVA HON'BLE MR. JUSTICE FARJAND ALI Order 28/10/2021 In this PIL, various directions have been issued in the past which are aimed at ensuring treatment of children identified to be suffering from rare disease 'Gaucher'. As the petition seeks to ventilate a grievance that proper treatment facility is not being provided to the children suffering from this disease, mainly because it incurs heavy cost of procuring medicines for treatment, the Union of India as well as the State both were asked by this (Downloaded on 29/10/2021 at 10:32:04 PM) (2 of 3) [CW-17098/2019] Court to file their response as to how they have planned to provide treatment.
Learned Additional Solicitor General of India has referred to a policy framed by them titled as 'Draft National Policy for Rare Disease'. This policy, as it is admitted, has been framed in compliance of the directions dated 23.03.2021 issued by the Delhi High Court in Writ Petition (Civil) No.5315/2020: Master Arnesh Shaw Vs. Union of India and Anr.
Broad outlines of the policy was narrated before this Court and we find that it is very comprehensive policy to treat various rare diseases including 'Gaucher' which is the disease from which the children in the present case are suffering from.
Learned Additional Solicitor General of India highlighted that the Government of India has already identified many Institutions under this scheme and children who are suffering from this disease may approach these institutions through their guardians/parents.
We, however, find that the State has not framed any such policy to detail infrastructure support and treatment towards such rare disease though learned counsel for the State would submit that in J.K. Loan Government Hospital, Jaipur, a rare disease centre, has been established, which is providing treatment to the persons suffering from rare diseases with whatever resources are available to them.
Learned counsel for the petitioner pointed out that the cost of treatment is heavy and the drugs are not only costly but rarely available and mostly required to be imported from other countries.
Learned counsel for the State would submit that procurement of costly medicines is an issue which the State is (Downloaded on 29/10/2021 at 10:32:04 PM) (3 of 3) [CW-17098/2019] trying to resolve but at present, the children who are under treatment, would be provided best possible treatment.
At this stage, we are inclined to issue directions to the State that children including those who have been named in the affidavit filed before us, shall be provided all possible treatment including medicines which have to be imported from outside, so as to ensure that they do not succumb to the disease only for want of proper treatment. How it would be done is a matter to be considered by the authorities in the Health Department of the State but in any case, the treatment to identified persons/children suffering from this disease has to be provided by the State.
During the course of arguments, this Court enquired from learned Additional Solicitor General of India whether it intends to create infrastructure and other necessities to facilitate treatment of rare disease in the AIIMS situated at Jodhpur to which learned Additional Solicitor General of India submits that he may be granted some time to seek instructions in the matter and clearly state before the Court action plan in this regard.
The matters be listed on 26.11.2021.
On the next date of hearing, the State is expected to come out with a policy to inform the Court regarding the scheme of treatment for rare diseases including the rare disease which the children are suffering from, as mentioned in the petition. (FARJAND ALI),J (MANINDRA MOHAN SHRIVASTAVA),J Pcg/bmg/44-45 (Downloaded on 29/10/2021 at 10:32:04 PM) Powered by TCPDF (www.tcpdf.org)