On March 30, 2021, Harsh Vardhan, Union Minister for Health & Family Welfare approved the ‘National Policy for Rare Diseases 2021’. The policy aims to address the high cost of treatment for rare diseases with increased focus on indigenous research.
- The problems facing treatment of rare diseases in India are – Lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities.
- Rare diseases are defined as diseases that occur infrequently in a population.
- The World Health Organization (WHO) defines rare diseases as having a frequency of less than 6.5-10 per 10, 000 people.
- According to estimates there are 7, 000 known rare diseases in the world, with 300 million patients (70 Million patients in India alone).
Note- February 28 is observed as Rare Disease Day every year.
Highlights of the Policy
- Provision of upto INR 20 Lakhs under the Umbrella Scheme of Rashtriya Arogya Nidhi (RAN) Scheme for rare diseases which require a one-time treatment. It is not limited only to Below-Poverty Line Families (BPL).
- The benefit of financial assistance will be extended to about 40% of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana.
- Proposal to set up a Crowdfunding Mechanism through which corporates/individuals can extend financial support for treatment of rare diseases. These funds will be utilized by the Centre of Excellence (CoE) for treatment of all categories of rare diseases & the remaining amount was spent for development related to rare diseases within the country.
Categories of Rare Disease
The policy has categorised rare diseases into three groups
- Disorders amenable to one-time curative treatment
- Those requiring long term or lifelong treatment
- Diseases for which definitive treatment are available, but challenges are to make optimal patient selection for benefit.
- National Consortium to be set up with the Department of Health Research, Ministry of Health & Family Welfare as convenor to increase focus on indigenous research of Rare disease.
- Creation of a National Hospital based Registry of rare diseases for better Research and Development.
- Emphasizes on early screening and prevention through Primary & Secondary health care infrastructure such as Health and Wellness Centres & District Early Intervention Centres (DEICs).
- Screening will be supported by Nidan Kendras set up by the Department of Biotechnology.
Centres of Excellence (CoE)
- 8 health facilities to be designated as Centre of Excellence (CoE), they will be provided one-time financial support of up to INR 5 Crore for upgradation of diagnostics facilities.
Commonly report Rare Diseases
Autoimmune disorders, congenital malformations, Hirschsprung’s disease, Gaucher disease, cystic fibrosis, muscular dystrophies & Lysosomal Storage Disorders (LSDs).
Recent Related News:
i.January 13, 2021, MoHFW has set up a Technical Expert Group under Preeti Pant, Joint Secretary, MoHFW to examine the findings from the National Family Health Survey-5 (NFHS-5),2019-20.
About Ministry of Health and Family Welfare (MoHFW):
Union Minister – Harsh Vardhan (Lok Sabha MP, Constituency – ChandniChowk, NCT of Delhi)
Minister of State – Ashwini Kumar Choubey (Lok Sabha MP, Constituency – Buxar, Bihar)