In a sigh of relief to those suffering with rare diseases, the Delhi High Court on Tuesday passed several directions for treatment of such patients including setting up of a National Consortium for Rare Disease.
A single judge bench of the high court presided over by Justice Prathibha M. Singh directed the Centre that The National Health Policy for Rare Diseases shall be finalised and notified on or before 31 March 2021.
“The Consortium shall consist of the Department of Biotechnology, ICMR, CSIR, 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 said.
The bench also directed that 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.
Justice Singh also asked the government to create a digital platform for crowdfunding and the same shall be linked to the rare diseases fund.
It also added that the consortium shall also approve application for funding of research projects in respect of treatment and therapies of rare diseases.
The said directions were passed while the single judge bench was hearing a batch of petitions concerning children suffering from rare diseases.
It was after considering the report of an expert committee appointed by the court that the said directions were passed.
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.”
Advocates Ashok Aggarwal, Kumar Utkarsh, Vivek Chib, Rahul Malhotra, Asif Ahmed, Manas Tripathi were appearing for the Petitioners, Senior Advocate Satvik Varma represented the All India Institute of Medical Sciences (AIIMS).