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

The Delhi High Court on Tuesday directed that the treatment of children suffering from rare diseases be started forthwith at AIIMS or other Centres of Excellences established across the Country, 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.

Justice Rekha Palli 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.

"….I'm of the view that the children cannot be made to suffer when it is an admitted position that they would be covered under the policy promulgated by the Respondent no 1 for welfare of children and therefore it is directed that the treatment of children be forthwith started by AIIMS and other Centre for Excellences as mentioned in the affidavit of Union of India," the Court directed.

Noting that the names of the Centres of Excellences are also mentioned in the policy promulgated for rare diseases by the Centre, the Court added that the directions for AIIMS and other Centres to commence the treatment would also include the direction to provide necessary medicines, cost of which shall be borne by the Central Government.

"It will ensure that necessary funds are provided to the Centres of excellences as and when demanded so that this amount spent on the treatment and procurement of medicines would be adjusted from the funds received in the portal or from National Disability Fund and other funds for the purposes of treatment as may be available with UOI," the Court added.

The Court added that it will be open for the Centre to pursue the application before the Kerala High Court for transfer of fund of Rs. 50 Crores lying with it which was collected for a child suffering from rare diseases who had unfortunately later succumbed to the said disease before the amount could be utilised.

During the course of hearing, Senior Advocate Siddharth Luthra appearing for the petitioner handed over a report to the Court disclosing the contributions made by various PSUs towards their Corporate Social Responsibility (CSR). The report stated that the PSUs were contributing an amount of Rs. 1200 Crores annually towards CSR.

Accordingly, the Court said that the Centre will be expected to impress upon the PSUs to contribute the funds to online crowd funding portal created for treatment of the children with rare diseases.

ASG Chetan Sharma also assured the Court that appropriate instructions will be issued to other Centres of Excellences as named in the policy.

On the previous date of hearing, the Court had asked the Centre as to whether it was in a position to start the treatment of the children even in absence of sufficient funds in the portal by adjusting funds available under the National Disability Fund, Rare diseases fund and other funds including CSR contribution from number of PSUs.

Today, ASG Sharma submitted that the Central Government was conscious of it's duty and was in fact trying it's best to arrange sufficient funds in the portal.

He also submitted before the Court that the Government was fully alive and sensitive towards the issue involved and that there was nothing adversarial in the case.

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, 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.