Delhi HC asked to start treatment for rare diseases, from AIIMS

NEW DELHI: Justice V Kameswar Rao of The Delhi High Court has directed the Centre to communicate to the All India Institute of Medical Sciences (AIIMS) as well as to other centers of excellence to start the treatment of certain children suffering from rare diseases without any delay.

Justice V Kameswar Rao, who was hearing a batch of petitions by these children, noted that it is the responsibility of the central government to ensure that necessary funds are provided to all Centers of Excellence including AIIMS as and when demanded the treatment of these children.

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The high court was told that petitioner children are suffering from rare diseases, including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter syndrome), and seek a 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. The judge's order, passed on February 1, came in response to the petitioners' stand that even after one month since the court directed the AIIMS and other Centers of Excellence to forthwith begin their treatment, there was no development. "It is directed that the respondent No.1 (Centre) shall issue a communication to the AIIMS as well as to the Centers for Excellence for starting the treatment of the petitioners (whichever petitioner approach such a Centre, being nearer to the place of residence) without any delay," the court said. Counsel for the central government said necessary directions in terms of the court's order shall be issued to the Centers of Excellence. Observing that it was "surprising that even after a period of one month no treatment has yet started," the court added, "the order passed on December 14, 2021, is very clear that the treatment of the petitioners i.e., children must start immediately". "Insofar as funds are concerned, the Court in the said order has clearly stated that it is the responsibility of the Union of India to ensure necessary funds are provided to all Centers of Excellence including AIIMS as and when demanded treatment of these children," the judge said.

Counsel for the AIIMS said that an expert committee has been constituted to undertake the study as to the nature and manner of treatment and the committee report needs to be placed before the Government for its approval before the treatment can be started. He also stated that in some cases of the non-DMD disease, treatment would start after requisite details are uploaded on the concerned portal and necessary funds are allocated.

On December 14 last year, the court had directed the AIIMS to forthwith start the treatment of eligible children suffering from rare diseases and asked the Centre to provide funds, saying it is painful to see kids in this situation and they cannot be made to suffer. It had directed the AIIMS and other Centers for Excellence (COE) to commence the medical treatment of these children that would include procurement of medicines whose expense would be borne by the central government and funds will be given to COE.

The court had said the amount spent on the treatment of these children would be adjusted to the funds received through a crowdfunding platform made operational for medicines and treatment for rare illnesses or national disability fund, whenever received.

The high court had earlier said the Centre has not given any sufficient justification for Rs 193 crore lying unutilized in the rare diseases fund for children and emphasized that it will not let kids die from such illnesses despite funds being available. It had 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.

On March 23 last year, 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.

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