The Union Health & Family Welfare Ministry has officially approved the “National Policy for Rare Diseases 2021” on 30th March 2021.
This development comes in the wake of the Delhi High court pulling up the union health ministry and setting a deadline of 30th March 2021 to notify the National Health Policy for Rare Diseases in an order dated 23rd March 2021.
In the subsequent hearing of this case on April 19, 2021, the Union Health Ministry told the Delhi court that it had asked All India Institute of Medical Sciences (AIIMS) to take the initiate to set up Centre of Excellences across the country to treat rare disease patients.
Rs 25 crore allocated for Rare Disease
The Union Health Ministry also informed the court that it has allocated Rs four crore to AIIMS and approved a budget of Rs 25 crore for the year 2021-22 for treating rare disease patients.
In a related development, the Union Health & Family Welfare Ministry also informed the Delhi High Court that the funds it allocated for Rare Disease treatment during the financial year 2020-21 were un-utilised and lapsed.
The Public Interest Litigation (PIL) was filed by Rare Disease affected children suffering from DMD and Mucopolysaccharidosis II or MPS II.
NCRDT
In its direction, the Delhi High court had also asked the union health ministry to set up National Consortium for Research, Development and Therapeutics (NCRDT) with the task of taking up research, drug development and enrolling rare disease patients for clinical trials.
Rare Disease 2021 Policy: Brief Highlights
The National Policy for Rare Diseases 2021 aims to focus on screening for rare diseases through District Early Intervention Centres (DEICs).
The health screening will also be supported by Nidan Kendras set up by the Department of Biotechnology. There is also provision for tertiary care by designating 8 premier health centres as ‘Centres of Excellence.
There is also a onetime grant facility for these ‘Centres of Excellence’ to upgrade their diagnostic infrastructure worth Rs 5 crores.
The policy also makes a provision for a rare disease patient (for any disease listed in Group 1) to seek financial aid of Rs. 20 lakhs under Rastriya Arogya Nidhi for treatment, which is made eligible for all those who come under Pradhan Mantri Jan Arogya Yojana.
