Children With Rare Diseases: Delhi High Court Asks AIIMS To Examine Medical Records Of DMD Patients Before Commencing Treatment

In a batch of pleas concerning treatment of children with rare diseases, the Delhi High Court has recently asked All India Institute of Medical Sciences (AIIMS) to examine medical records of children suffering from Duchenne Muscular Dystrophy (DMD) in order to frame a recommendation of whether commencement of treatment is likely to yield any results.

Justice Yashwant Varma 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.

The Court directed that the aforesaid exercise to be undertaken by the Competent Committee in AIIMS, adding that a recommendation in respect of the said DMD patients forming part of the batch petitions be placed on the record on or before June1, the next date of hearing.

The development came after Dr. Madhulika Kabra from AIIMS apprised the Court about various complexities attendant to the treatment of children suffering from rare diseases like DMD, Gaucher and MPS (II).

Dr. Kabra submitted that while in cases relating to DMD, the affidavit of AIIMS filed earlier on 26 October 2021 had averred that they would be "amenable to treatment", bearing in mind the fact that the drugs and treatment protocols presently available themselves represent experimental therapy and that in the absence of requisite and adequate data, their responses to the treatment and its efficacy in individual cases was yet to be determined.

While further taking note of patients who have been diagnosed with Gaucher and MPS (II), the Court said that AIIMS had placed its demand for release of funds upon the Centre on 16 February 2022.

"That request has been reiterated in terms of its communication of 27 April 2022. The Court requests the learned ASG to take instructions in this respect," the Court said.

This was after the Court had recently sought the response of Central Government over demands by AIIMS regarding release of funds required by it for meeting the needs of treatment of children suffering from rare diseases.

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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