Expected Centre to transfer unutilised crowd sourced amount to rare diseases fund:HC

Justice Rekha Palli said the Centres stand that it was not a party to the proceedings before the Kerala High Court, in which the amount was collected, was unacceptable and directed it to file a comprehensive status report on the compliance of its orders in relation to the treatment of persons with rare diseases.The court took on record the assurance given by Additional Solicitor General Chetan Sharma that appropriate action will be initiated within a week.

The Delhi High Court Monday said that it expected the Centre to take steps to transfer 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. Justice Rekha Palli said the Centre's stand that it was not a party to the proceedings before the Kerala High Court, in which the amount was collected, was unacceptable and directed it to file a comprehensive status report on the compliance of its orders in relation to the treatment of persons with rare diseases.

The court took on record the assurance given by Additional Solicitor General Chetan Sharma that appropriate action will be initiated within a week. "Union of India (UOI) has filed a counter affidavit (saying) they are not a party to the said proceeding. This is unacceptable. Even if UOI was not a party, it was expected that it would take steps to ensure that the amount does not remain unutilised and is forthwith transferred to the rare diseases fund," the judge said. "You have to move an application. Take action," the judge further said. The court also directed AIIMS to file a status report. "A comprehensive status report be filed by the UOI and AIIMS on how they have complied with the orders (passed by the court)," the court said and posted the matter for hearing on October 27. 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 of cost 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 crowd-funding platform, over Rs 63 crore were collected from the general public for the treatment of a person suffering from a rare disease, who unfortunately expired and the amount was thus lying unutilized.

The court had then asked the Centre to obtain instructions on the utilization of the amount for the treatment of other similarly placed patients under the National Policy for Rare Diseases, 2021. On January 28, the court had passed an order directing the central government to make operational the digital crowd funding 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 setting 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 for 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 crowd funding shall be linked to the fund and those individuals and companies wishing to contribute shall make direct contributions into it, the court had said. Last month, the court was informed by the Centre that it has made operational a digital platform for crowd funding of the expensive medicines and treatment for rare diseases. PTI ADS RKS RKS

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