Delhi HC sets up 5 member panel to implement rare disease policy

Justice Prathiba M Singh on May 15, directed to constitute a five-member committee to implement the Rare disease policy and to look into the cases registered with the All India Institute of Medical Sciences (AIIMS).

Also Read:Delhi HC forms panel to implement National Rare Disease Policy 2021

“There is a need for some urgent steps to be taken in close coordination between the medical community, the providers of therapies for rare diseases and Governmental agencies,” Justice Prathiba M Singh observed in the order.

While passing the order, the bench pointed out, “Under the current framework, the Centres for Excellence are not centrally coordinated, leading to a lack of timely availability and adequate therapies for patients with rare diseases.”

The high court passed the order while hearing a batch of petitions filed by children suffering from the rare disease.

The National Committee for Rare Disease will have Dr Nikhil Tandon, Professor, AIIMS, Secretary, Ministry of Health and Family Welfare or one of his nominees, Director General, Indian Council for Medical Research (ICMR), Drug Controller General of India, Dr Madhulika Kabra, Professor, AIIMS as its members.

“The mandate of the Committee would broadly be to take all steps needed for implementation of the National Rare Disease Policy, 2021,” the court said.

The Committee shall look into the procurement of therapies and drugs and the creation of an associated logistical framework for the administration of treatment for patients with rare diseases.

The committee shall also recommend necessary steps for the indigenisation of therapies and medicines for rare diseases and identify the manner in which the same can be made accessible to the lakhs of patients who, as per the Policy, are suffering from rare diseases.

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 said.

The high court said that the committee shall into the way how the treatment can be recommended to those patients whose treatment has stopped due to funding.

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 High Court said that 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, it added.

The high court passed the order while hearing 96 petitions filed by the family members of the children suffering from the rare disease.

Also Read:Health Ministry grants Rs 10 crore to AIIMS for treatment of rare diseases