Delhi High Court Constitutes 5-Member Committee For Efficient Implementation Of National Rare Diseases Policy

The Delhi High Court has constituted a five-member committee so that the National Policy for Treatment of Rare Diseases, 2017 can be implemented in an efficient manner and also to ensure that its benefits reach the ultimate patients.

Justice Prathiba M Singh said that there is a need for certain urgent steps to be taken in close coordination between the medical community, providers of therapies for rare diseases and the Governmental agencies.

“Under the current framework, the Centres for Excellence are not centrally coordinated, leading to lack of timely availability and adequate therapies for patients with rare diseases – who are mostly children,” the court noted.

The five members of the committee are AIIMS doctors Dr. Nikhil Tandon and Dr. Madhulika Kabra, Secretary of Ministry of Health & Family Welfare or one of his nominee, the Director General of Indian Council for Medical Research and Drug Controller General of India.

Justice Singh said that the mandate of the committee will include procurement of therapies and drugs and creation of associated logistical framework for administration of treatment for patients with rare diseases.

The committee will also recommend necessary steps for indigenisation of therapies, medicines for rare diseases and identify the manner in which the same can be made accessible to the lakhs of patients.

“The Committee, while working broadly under the umbrella of the Policy, would undertake a periodic review of the Policy and recommend to the Ministry of Health and Family Welfare, the changes needed in the Policy if the same is deemed necessary,” the court added.

Justice Singh further said that the committee will also take up the issue of immediate requirement of patients whose treatments have been stopped due to lack of funding, on an urgent basis so that it can be re-commenced.

The court said that the committee would be free to contact the providers or manufacturers or distributors of the DMD therapies as also other therapies, in a manner to ensure immediate commencement of providing adequate doses for the said patients.

“The Committee is also free to consult any other persons or organisations as Invitees to the Committee meetings to work for the overall objective of the Policy. The Committee may also contact any subject expert or persons with domain knowledge for the sake of expediting the procurement of medicines or therapies. For the said purpose, if any contact details of the patients or the providers of therapies are required, ld. Counsel for the Petitioners, AIIMS or the ld. standing counsel is free to provide the same to the Committee,” the court added.

While listing the matter for hearing on May 29, Justice Singh said that the first meeting of the Committee shall be held between May 17 and 21.

The court was hearing a bunch of pleas concerning the treatment of children suffering from rare diseases like Duchenne Muscular Dystrophy and Hunter's syndrome.

The petitions before the court seek free-of-cost treatment for the patients, which is otherwise very expensive.

Case Title: Master Arnesh Shaw v. Union of India & Anr.

Citation: 2023 LiveLaw (Del) 417

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