Monday, April 19, 2021
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Delhi HC constitutes committee to assess aspects of Rare Disease Treatment

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The Delhi High Court has constituted a nine-member Committee for the examination of feasibility of accelerated approvals and explore confidential proposal put up by M/s Sarepta Therapeutics for the purpose of making the therapy available for children suffering from RARE DISEASE Duchenne Muscular Dystrophy.

A Single Judge bench of Justice Prathiba M Singh noted,

“it appears that clinical trials are already underway in India for drugs/therapies for the treatment of DMD.”

The petition has been filed by the parents of children suffering from DMD seeking direction to the central government to provide free treatment for the rare disease as the disease fall under the category of Rare Disease in the Draft Health Policy for Rare Diseases, 2020.

Over the issue of Crowd funding the bench observed,

“The clear stand of the Union of India appears to be that until the policy gets notified and the eplatform for crowdfunding is created, there can be no crowdfunding which can be explored.”

However, counsel appearing for the Ministry of Health submitted that he has written to four organisations to arrange for funding for treatment of the said patients.

The bench has appointed Dr. Renu Swarup, Secretary of Department of Biotechnology, Govt. of India as the Chairperson of the committee and other members from All India Institute of Medical Sciences, Sir Ganga Ram Hospital, Dystrophy Annihilation Research Trust, Institute of Child Health, CHILDS Trust Hospital and Ministry of Health and Family Welfare.

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The bench has directed the committee to submit a report over the major aspects:

  1. How to immediately provide treatment and therapy options to the Petitioners and similarly situated patients suffering from DMD, Hunter’s syndromes and other rare diseases.
  2. Steps to be taken to indigenize the development of the therapies in India, and reasonable timelines required to be followed thereof
  3. Whether accelerated approval processes can be considered especially in view of the research currently being undertaken in India for DMD?
  4. Immediate concrete proposals for crowdfunding of the costs of treatment for children with rare diseases.

The bench has further directed the Central Government to file an affidavit specifying the budget for health in the last five years and whether any part of the budget has been unused and can be used for the purpose of treatment of the Petitioners or the indigenous development of therapies for the treatment of rare diseases.

The bench has listed the matter for further hearing on March 15.


-India Legal Bureau

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