The Delhi High Court on Tuesday expressed its displeasure over treatment not yet provided to the children suffering from the rare disease Duchenne muscular dystrophy (DMD) despite the direction of the court and directed to start the treatment immediately.
Justice V Kameswar Rao said, ''It is surprising that even after a period of one month no treatment has yet started. Insofar as funds are concerned, the court in the last order has clearly stated that it is the responsibility of the Union of India to ensure that necessary funds are provided to all centres of Excellence including AIIMS as and when demanded for the treatment of these children."
The High Court had on 14 December 2021 passed an order on the issue of petitioners required to receive necessary treatment as covered under the National Policy for Rare Diseases, 2021.
The bench said in the order uploaded on Wednesday, ''I must state here that the submissions made by the counsel appearing for AIIMS are not at all appealing. The order passed on December 14, 2021, is very clear that the treatment of the petitioner children must start immediately.
Advocate Ripudaman Bhardwaj, Counsel appearing for Government of India submitted that the necessary directions in terms of the last order shall be issued to the Centres of Excellence.
The bench directed that the Government of India shall issue a communication to the AIIMS as well as to the Centres of Excellence for starting the treatment of the petitioners' children (whichever petitioners approach such a centre, being nearer to the place of residence) without any delay.
The bench also directed that the instructions must also go to the AIIMS as well by tomorrow fixing the date and time for reporting as 2 pm on February 3, 2022.
The bench noted that the Counsels for the petitioners stated that despite efforts to reach out to the authorities for starting the treatment, no response has been received from the All India Institue of Medical Sciences (AIIMS).
Advocate Tanveer Oberoi, the Counsel for AIIMS, submitted that the disease of petitioners primarily being DMD/ non-DMD, an expert committee has been constituted to undertake the study as to the nature of the treatment to be given, to consider the efficacy of the medicines which need to be procured from the manufacturers and the committee report need to be placed before the Government of India for its approval before the treatment can be started.
He also submitted that the children having non-DMD disease, their details have been uploaded on the portal after evaluation, and with regard to rest shall be uploaded at the earliest. The treatment with regard to those petitioners can be started after the necessary funds are allocated.
On the other hand Advocate Siddharth Luthra, Senior Counsel for the petitioners stated that the submission advanced by Advocate Oberoi was made even at the last date of hearing but the same were negated resulting in the passing of the order on 14 December 2021.
He further submitted that the treatment of petitioner children had to start immediately. He said that in fact, the obligation was put on the Union of India to ensure appropriate instructions were sent to the centre for excellence.
Senior Counsel for the petitioner argued that what is being contended by Oberoi may not be correct as the nature of treatment is known and is being given in the AIIMS.
He said that it is surprising that an institution like AIIMS is still considering through a committee the nature of treatment be provided to the DMD patients.
He submitted that the treatment has not started even after a lapse of more than one month of the order passed by the court on 14 December 2021. The primary reason for the AIIMS not to start the treatment is the sanctioning of the funds.
The Counsel who appeared on behalf of AIIMS submitted that AIIMS is not in a position to utilise the annual budget sanctioned to it, for the treatment of petitioners.
He also submitted that the petitioners who are suffering from non-DMD disease, can be directed to report to the Chairman of Rare Diseases, Dr Madhulika Kabra day after tomorrow, on which date they shall be attended to and the treatment shall be started.
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