Patna High Court - Orders
Raju Yadav vs The Union Of India on 14 March, 2023
Author: Madhuresh Prasad
Bench: Madhuresh Prasad
IN THE HIGH COURT OF JUDICATURE AT PATNA
Civil Writ Jurisdiction Case No.8053 of 2021
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Raju Yadav
... ... Petitioner/s
Versus
The Union of India & Ors.
... ... Respondent/s
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Appearance :
For the Petitioner : Mr. Rajesh Kumar Pandey, Advocate
Mr. Sandeep Jha, Advocate
For the Union of India : Mr. Dr. Krishna Nandan Singh, ASG
Mr. Kumar Priya Ranjan, CGC
For the State : Mr. S. D. Yadav, AAG-9
For the AIIMS : Mr. Binay Kumar Pandey, Advocate
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CORAM: HONOURABLE THE ACTING CHIEF JUSTICE
and
HONOURABLE MR. JUSTICE MADHURESH PRASAD
ORAL ORDER
(Per: HONOURABLE THE ACTING CHIEF JUSTICE)
9 14-03-2023It is stated by Mr. S.D. Yadav, learned AAG-9, that a supplementary counter-affidavit has been e-filed on 04.07.2022.
The said counter-affidavit is not there on record. He is permitted to file hard copy of the said affidavit in Court.
Mr. S.D. Yadav, learned AAG-9, has informed this Court that the Health Department, Government of Bihar, has come out with a resolution dated 22.08.2022 containing policy of the State Government pertaining to grant of sanction for treatment of Duchenne Muscular Dystrophy (DMD) and other Genetic Muscular Dystrophy. He has also informed the Court that at least 180 patients suffering from such diseases have Patna High Court CWJC No.8053 of 2021(9) dt.14-03-2023 2/4 received benefits in terms of resolution dated 22.08.2022 for their treatment and comfortable living.
Let the said resolution of the State Government be brought on record by way of supplementary counter-affidavit. The State of Bihar shall also be required to bring on record the list of beneficiaries of the State Government's Policy contained in the resolution dated 22.08.2022.
In the writ petition, the petitioner has disclosed the details of the children/persons suffering from Duchenne Muscular Dystrophy (DMD).
The State-respondents in their affidavit shall be required to disclose as to whether the persons whose names have been mentioned in the writ petition have also been given benefit under the scheme of the State Government or not.
It is noted that this writ petition has been filed in the nature of Public Interest Litigation mainly for the implementation of the National Policy for Treatment of Rare Diseases, 2021 of the Government of India to the extent that the same relates to the treatment of Duchenne Muscular Dystrophy (DMD). The said National Policy has been brought on record by way of counter-affidavit filed on behalf of the Union of India. Clause 9.1 of the said policy requires the Government of India Patna High Court CWJC No.8053 of 2021(9) dt.14-03-2023 3/4 to notify selected Centres of Excellence (COE) which would be premier Government tertiary hospitals with facilities of diagnosis, prevention and treatment of rare diseases. To begin with, following institutions have been notified as Centres of Excellence for rare diseases:-
a) All India Institute of Medical Sciences, New Delhi
b) Maulana Azad Medical College, New Delhi
c) Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow
d) Post Graduate Institute of Medical Education and Research, Chandigarh
e) Centre for DNA Fingerprinting & Diagnostics with Nizam's Institute of Medical Sciences, Hyderabad
f) Kind Edward Medical Hospital, Mumbai
g) Institute of Post-Graduate Medical Education and Research, Kolkata
h) Center for Human Genetics (CHG) with Indira Gandhi Hospital, Bengaluru It has been further mentioned that more Centres of Excellence can be added for regional outreach, if they are found to be suitable in terms of infrastructure and human resources based on recommendations of Technical Committee.
Mr. S.D. Yadav, learned AAG-9, has drawn this Patna High Court CWJC No.8053 of 2021(9) dt.14-03-2023 4/4 Court's attention to a letter dated 28.06.2022 addressed to the Government of India for developing Indira Gandhi Institute of Medical Sciences, Patna (IGIMS) as Centre of Excellence for treatment of rare diseases.
The said request is apparently in the light of the provision under Clause 9.1 of the National Policy, 2021, as noted above.
He has submitted that till date the Central Government has not responded to the communication dated 28.06.2022.
List this matter on 04.04.2023.
In the meanwhile, the Court expects learned Additional Solicitor General for India to seek clear instructions from the Department as to how the said policy is to be implemented at the ground level and whether any decision has been taken on the request made by the State Government for developing IGIMS, Patna as Centre of Excellence for treatment of rare diseases.
(Chakradhari Sharan Singh, ACJ) ( Madhuresh Prasad, J) Sumit/Shashank-
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