[BREAKING] Delhi High Court sets up Rare Diseases Committee and Fund; directs notification of National Policy for Rare Diseases

The Delhi High Court today directed the Central government to finalise and notify the National Health Policy for Rare Diseases on or before March 31, 2021. (Master Arnesh Shaw vs UOI)..A Single Judge Bench of Justice Prathiba M Singh has also directed setting up of National Consortium for Research, Development and Therapeutics for Rare Diseases, a Rare Diseases Committee as well as a Rare Diseases Fund. .The interim order was passed by the Court in a batch of petitions concerning children suffering from rare diseases. .Comprehensive directions were passed by the Court considering the report of an expert committee appointed it, the affidavit of the Ministry of Health & Family Welfare and its own orders passed from time to time..As per the Court's directions, the Rare Diseases Committee shall be set up at AIIMS for the examination of applications for treatment and funding with respect to rare diseases. .When an application is received directly at AIIMS, a decision has to be taken by the Committee within two weeks. In case an application is received through other instiutions notified under the Policy, the decision has to be taken by the Committee within four weeks, the Court has said. .The Court has also directed that the entire unspent budget allocated for rare diseases for the past three years shall be immediately moved into the Rare Diseases Fund..The Fund shall be managed, supervised and utilised by AIIMS which shall be its nodal agency. .The digital platform created under the Policy for crowd funding etc shall be linked to the Fund and those who wish to contribute shall make direct contributions into it. .The Consortium shall consist of the Department of Biotechnogy, ICMR, CSIR, other related ministry and departments. The Consortium shall inter alia look after research, the development of indigenous treatment, manufacturing of drugs, inclusion of persons in clinical trials etc. .While stating that the government may consider increasing the budget for rare diseases for the upcoming financial year, the Court has clarified that the Policy shall inter alia deal with giving financial incentives for manufacturing, contribution towards treatment etc. .It is further said that the above directions shall form part of the Policy. .As per the Court's directions, the Policy shall be placed before it, and the petitioners before it can make a representation to the Committee. .Earlier this year, the Court had 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..It had thereafter consituted a nine-member Committee to deal with issues being faced by persons suffering from rare diseases. .The matter would be heard next on April 19. .Advocates Ashok Aggarwal, Kumar Utkarsh, Vivek Chib, Rahul Malhotra, Asif Ahmed, Manas Tripathi represent various petitioners.Senior Advocate Satvik Varma appear for AIIMS.