Health Ministry Releases “National Policy for Rare Diseases 2021”

Health Ministry Releases “National Policy for Rare Diseases 2021”

Union Health & Family Welfare Minister approved the “National Policy for Rare Diseases 2021” on 30th March 2021. The policy document has been uploaded on the website of Ministry of Health & Family Welfare.  For quite some time different stake holders have been demanding for a comprehensive policy for prevention and management of rare diseases.

What are the Rare Diseases?

Now the question is what are the Rare Diseases? According to the World Health Organization (WHO) a rare disease as a lifelong disease or disorder that often highly weakens an individual. It has a prevalence of 1 or less per 1000 population. Example: Haemophilia, Thalassemia, Sickle cell anaemia, auto-immune diseases among others.

Behind these, every country has its own definition for rare diseases. The US defines rare diseases as a disease or condition that affects fewer than 200,000 patients in the country. Likewise, the EU defines rare diseases as life-threatening or chronically debilitating (weakening) condition. It should affect no more than 5 in 10,000 people.

Objective of the Policy

• The policy aims to lower the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy. The strategy includes awareness generation, counselling programmes, providing affordable Health Care among others.
• The Policy also focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres (DEICs) and through counselling for the high-risk parents.
• Policy also aims to strengthen tertiary health care facilities for prevention and treatment of rare diseases through designating 8 health facilities as Centre of Excellence and these CoEs will also be provided one-time financial support of up to Rs 5 crores for upgradation of diagnostics facilities.
• A provision for financial support up to Rs. 20 lakhs under the Umbrella Scheme of Rastriya Arogya Nidhi is proposed for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1 in the rare disease policy). Beneficiaries for such financial assistance would not be limited to BPL families, but the benefit will be extended to about 40% of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana.
• The Policy also envisages a crowd funding mechanism in which corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases. Funds so collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research.