"Children Are Dying": Delhi High Court Raps Centre Over Non-Utilization Of Unspent Budget, Allocated To Rare Diseases Fund

The Delhi High Court on Tuesday rapped the Central Government for not utilizing the unspent budget, which was allocated for people suffering from rare diseases, for the last three years. 

Expressing unhappiness over the response filed by the Centre, Justice Rekha Palli directed Additional Solicitor General Chetan Sharma to come back with concrete reasons and justifications.

"Though an affidavit has been filed by the respondent no 1, the same gives no sufficient justification for not utilising the unspent budget allocated for rare diseases for the last three years to the rare diseases fund, which as noticed by the Court, was in the tune of Rs. 193 crores," the Court said.

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.

"The problem is, an affidavit is there but it doesn't say anything. It only says you have done this. You have done that. It does not tell any concrete steps. Are the children getting anything? No. What is this going? If after 9 months of the judgment we are still back to square one..," the Court said.

This comes after the Court had in September said that it was expected of the Centre to take steps for transferring to the rare disease fund the unutilized crowd fund amount, kept with Kerala High Court which was raised for treatment of a patient with rare disease who had later died.

At the outset, Sharma apprised the Court that an impleaded application has been moved by the Centre in the Kerala High Court which stands allowed. However, he added that further progress could not happen owing to the ASG demitting his office.

To this, the Court said:

"In Kerala also you get yourself impleaded and you leave it at that. If the ASG is not there, are no counsels working there? Children are dying because of lack of funds."

"That is an extra fund you are getting which the Kerala HC managed to collect on its own. But what about the funds which the Court had recorded? There are some unused funds where are they?"

"I will not let these children die despite the funds being there. I understand that government has its own limitations but when there are funds why shouldn't they get it?"

While directing the Centre to come back with a concrete answer, Justice Palli added:

"What is this answer that the fund has lapsed? What do you expect? I understand Government has its own limitations and it cannot have unlimited funds. But once it's allotted funds, why are they not being used?"

The Court also took note of the fact that the Centre's affidavit did not give any justification as to why the names of the petitioners were not included till date in the online portal. Accordingly, the Court granted time to the ASG for obtaining instructions on the said aspect.

"On the next date, the learned ASG will also obtain instructions whether it is possible to provide treatment to petitioners and thereafter adjust the amount which may be received in the portal set up for the said purpose," it added.

The matter will now be heard on December 15.

Earlier, 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.