Delhi HC Directs Centre To Issue Communications To AIIMS, Centres Of Excellence To Start Treatment Of Children Suffering From Rare Diseases

The Delhi High Court has directed the Centre to issue communications to the All India Institute of Medical Sciences (AIIMS) and Centres for Excellence established across the Country, for starting the treatment of the children suffering from rare diseases, without any delay.

"Noting the submission made by counsels for the parties, it is directed that the respondent No.1 shall issue communication to the AIIMS as well as to the Centres for Excellence for starting the treatment of the petitioners (whichever petitioner approach such a centre, being nearer to the place of residence) without any delay," Justice V Kameswar Rao directed.

The Court was hearing a clutch of petitions concerning children suffering from rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's syndrome. The pleas sought directions to provide them free of cost treatment owing to the reason that the medical treatment involved was very expensive.

Earlier, Justice Palli had in December last year, in a detailed order directed that the treatment of such children must be started forthwith at AIIMS or other Centres of Excellences observing that such children cannot be made to suffer when they are covered under the policy promulgated by the Central Government for the welfare of the children.

Delhi High Court Orders For Treatment Of Children Suffering From Rare Diseases, Directs Centre To Ensure Availability Of Necessary Funds

During the course of hearing yesterday, the counsel appearing for the petitioner-children argued that despite the efforts to reach out to the authorities for starting the treatment, no response was received, particularly from AIIMS.

Advocate Tanveer Oberoi appearing for AIIMS submitted that an expert committee was constituted to undertake the study as to the nature of treatment to be given and also to consider the efficacy of the medicines to be procured from the manufacturers. He also submitted that the said committee report needs to be placed before the Central Government for its approval before the treatment can be started.

He also stated that for petitioners having non DMD disease, their details were uploaded on the portal, adding that details of the others shall be uploaded at the earliest. Also, he added that the treatment with regard to such petitioners can be started after the necessary funds are allocated.

On the other hand, Senior Advocate Siddharth Luthra appearing for few petitioners submitted that it was surprising that an institution like AIIMS was still considering the nature of treatment to be provided to the DMD patients through a committee. According to him, the said treatment had not started even after a lapse of more than one month of the earlier order passed.

"I must state here that the submissions made by Mr. Oberoi are not at all appealing. The order passed on December 14, 2021 is very clear that the treatment of the petitioners i.e., children must start immediately. It is surprising that even after a period of one month no treatment has yet started," the Court said.

With regards to the allocation of funds, the Court said the previous order was clear in stating that it is the responsibility of the Union of India to ensure necessary funds are provided to all Centres of Excellence including AIIMS as and when demanded for treatment of these children.

"List the writ petitions for further consideration on March 14, 2022," the Court said.

Earlier, the Court had rapped the Central Government for not utilizing the unspent budget, which was allocated for people suffering from rare diseases, for the last three years. 

Previously, the Centre had informed the Court that it has set up and made operational an online crowdfunding platform for collecting funds for the treatment of children suffering from rare diseases. 

The development came after the Court, in July last year, directed the Union Ministry of Health and Family Welfare to immediately launch a dedicated online crowdfunding platform for collecting funds for treatment of children suffering from rare diseases.

The Court had also observed that merely because of the exorbitant price of a drug or treatment, children suffering from a rare disease cannot be deprived of the treatment.

Case Title: Master Arnesh Shaw v. Union of India & Anr.