Delhi HC gives nod for NCRD, orders to finalise National Health Policy for Rare Diseases before March 31

The Delhi High Court on Tuesday passed several directions for treatment of people suffering from rare diseases including setting up a National Consortium for Rare Disease (NCRD). The Court also directed the Central government to finalise and notify the National Health Policy for Rare Diseases on or before March 31 this year.

A single-judge bench of Justice Prathibha M Singh while issuing the direction said, "The Consortium shall consist of the Department of Biotechnology, Indian Council of Medical Research (ICMR), Council of Scientific and Industrial Research (CSIR) and other related ministry and departments."

"The consortium shall make any recommendations, if any, as to whether patients suffering from rare diseases ought to be included in any of the clinical trials currently taking place," the bench added.

The directions were passed by the Court in a batch of petitions concerning children suffering from rare diseases.

The bench also asked the Union of India that the National Health Policy for Rare Diseases shall be finalised and notified on or before March 31, 2021.

Advocates Ashok Aggarwal, Kumar Utkarsh appeared for the petitioners, and Senior Advocate Satvik Varma represented the All India Institute of Medical Sciences (AIIMS).

The bench while issuing the direction also said a rare diseases committee shall be set up at AIIMS which shall examine the application for treatment or funding received from any patients suffering from rare diseases.

"Entire unspent budget allocated for rare diseases for years 2018-19, 2019-20, 2020-21, as per the affidavit of the Ministry shall be moved to a fund called the Rare Diseases Fund which shall be managed by the AIIMS. A separate bank account shall be opened by the director of AIIMS for this purpose," it said.

It also added that the consortium shall also approve an application for funding of research projects in respect of treatment and therapies of rare diseases.

The Delhi High Court had earlier constituted a committee with Dr Renu Swarup as its Chairperson and directed the committee to file a detailed report on major aspects of the said subject.

The Court had also earlier opined that "right to health and healthcare was a fundamental right, and therefore, finalisation of the policy on rare diseases could not be kept pending indefinitely."

( With inputs from ANI )