Delhi High Court Directs Setting Up Of Rare Diseases Fund, Committee & Notification Of Policy

The Rare Diseases Committee, which has been designated as the nodal agency and primary manager of the Rare Diseases Fund, will be responsible to carry out the task of examining applications for treatment and funding of rare diseases and will be set up at the All India Institute Of Medical Sciences (AIIMS).

Hearing a batch of petitions concerning children suffering from rare diseases, the Single Judge bench of Justice Prathiba Singh also directed for the setting up of a National Consortium for Research, Development and Therapeutics for Rare Diseases.

Considering the report of an expert committee set up by it, and the affidavit on the matter by the Ministry of Health and Family Welfare, the court today passed extensive directions in the matter.

On an application for funding of a rare disease, a decision has to be taken by the Committee within two weeks, when received directly, and within four weeks when received through other instiutions notified under the Policy.

While stating that the government may consider increasing the budget for rare diseases for the upcoming financial year, 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. Notably, it shall be possible for donors to make direct contributions to the Fund through the digital platform created under the Policy for crowd funding.

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.

Earlier the Court had consituted a nine-member Committee to deal with issues being faced by persons suffering from rare diseases.

The matter will be heard next on April 19.