Can’t let kids with rare diseases die, no explanation by Centre for not utilising fund: Delhi HC

A bench of the high court questioned why the funds were not being given to children suffering from rare diseases despite an availability of Rs 193 crore

The Delhi High Court Tuesday said the Centre has not given sufficient justification for Rs 193 crore lying unutilised in the rare diseases fund for children and emphasised that it will not let kids die from such illnesses despite funds being available.

The high court pulled up the authorities for making a “mockery of the whole thing” and said it was strange that the allocated funds are available but not being spent on children suffering from rare diseases. “The affidavit filed by Respondent no. 1 (Centre) gives no reason or sufficient justification for not utilising the unspent amount of the fund for the last three years on children suffering from rare diseases,” Justice Rekha Palli said.

The high court said the government’s affidavit also gives no sufficient justification as to why names of petitioner children are not included till date on the digital crowdfunding platform made operational for medicines and treatment for rare illnesses.

It asked the government to take instructions on whether it is possible to provide treatment to the petitioner children and then adjust the amount collected through crowdfunding.

The court granted time to Additional Solicitor General Chetan Sharma to seek instructions on the issue and listed the matter for further hearing on December 14.

“What is this? Children are dying because of lack of funds... What about the corpus which is available with the government here. I will not permit these children to die despite funds being available. When there are funds, why should the children suffering from rare diseases not get it?” the judge said.

Also Read — Digital crowdfunding platform for rare diseases made operational: Centre to Delhi HC

The court did not accept the submission of the government counsel that the unutilised amount in the fund gets lapsed and said "what kind of answer is this?".

On the issue of transfer of the unutilised amount of over Rs 63 crore, lying with the Kerala High Court after it was collected from the general public for the treatment of a person suffering from a rare disease, to the rare diseases fund, the Centre told the Delhi High Court that it has filed an impleadment application before the Kerala court.

The court was hearing a batch of petitions on behalf of children suffering from rare diseases, including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), and seeking direction to the Centre to provide them uninterrupted and free treatment as the therapy is very expensive.

DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that affects boys almost exclusively and causes progressive weakness.

MPS II is a rare disease that is passed on in families and it mainly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.

On August 11, the court was informed that pursuant to an order passed by the Kerala High Court for establishing a digital crowdfunding platform, over Rs 63 crore was collected from the general public for the treatment of a person suffering from a rare disease, who died and the amount was thus lying unutilised.

The court had then asked the Centre to obtain instructions on the utilisation of the amount for the treatment of other similarly placed patients under the National Policy for Rare Diseases, 2021.

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On January 28, the court had passed an order directing the Central government to make operational the digital crowdfunding platform for medicines and treatment for rare illnesses.

On March 23, the court had passed a slew of directions in connection with the treatment of persons with rare diseases, including a direction to notify the National Health Policy for Rare Diseases by March 31 and set up a National Consortium for Research, Development and Therapeutics, a rare diseases committee at AIIMS and a fund for such ailments.

It had directed that the entire unspent budget allocated for rare diseases over the past three years shall be immediately moved into the rare diseases fund, which shall be managed, supervised and utilised by nodal agency AIIMS.

The digital platform created under the policy for receiving crowdfunding shall be linked to the fund and those individuals and companies wishing to contribute shall make direct contributions into it, the court had said.

In July, the court was informed by the Centre that it has made operational a digital platform for crowdfunding of the expensive medicines and treatment for rare diseases.

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