Treatment Of Children With Rare Diseases: Delhi High Court Seeks Centre's Response Over Demand By AIIMS For Release Of Funds

The Delhi High Court has sought the response of Central Government over demands by All India Institute of Medical Sciences (AIIMS) regarding release of funds required by it for meeting the needs of treatment of children suffering from rare diseases.

Justice Yashwant Varma directed the Centre to take the demands into consideration and place its stand by way of an affidavit to be filed on or before April 29, the next date of hearing.

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.

During the course of hearing, the amicus curiae placed on record a chart setting out the rare diseases which afflict the individual children, the recommendations made in respect of each individual child by the Committee for Rare Diseases as constituted by AIIMS and the status of treatment.

The counsel appearing for AIIMS however pointed out to the Court that till date, no demands had been placed with respect to the release of requisite funds on the Centre in light of the decision of the Central Technical Committee.

"…. let AIIMS place its demand with respect to release of requisite funds which would meet the needs for the treatment of patients suffering from DMD. The Union shall take those demands into consideration and place its stand on the record of these proceedings by way of an affidavit to be filed on or before the next date fixed," the Court ordered.

At the outset, the Centre apprised the Court that it has decided to challenge the orders dated 14th December 2021 and 1st February, 2022 by way of a Special Leave Petition before the Supreme Court.

"The Court is apprised that presently the said Special Leave Petition is lying in defect. Let the Court be apprised the outcome of the said petition on the next date fixed," the Court said.

The Court had earlier directed the Centre to issue communications to the AIIMS and Centres for Excellence established across the Country, for starting the treatment of the children suffering from rare diseases, without any delay.

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.

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.

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