03 Apr 2021: PIB Summary & Analysis

April 3rd, 2021, PIB:- Download PDF Here

TABLE OF CONTENTS

1. National Policy for Rare Diseases, 2021

1. National Policy for Rare Diseases, 2021

Context:

Union Health Minister approves National Policy for Rare Diseases, 2021.

Background:

• For quite some time different stakeholders have been demanding for a comprehensive policy for prevention and management of rare diseases. 
• The field of rare diseases is very complex and heterogeneous and prevention, treatment and management of rare diseases have multiple challenges.   
• Early diagnosis of rare diseases is a major challenge owing to a variety of factors that include lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities, etc.
• There are also fundamental challenges in the research and development for the majority of rare diseases as relatively little is known about the pathophysiology or the natural history of these diseases particularly in the Indian context. 
• Rare diseases are also difficult to research upon as the patient pool is very small and it often results in inadequate clinical experience.
• The cost of treatment of rare diseases is prohibitively expensive. Various High Courts and the Supreme Court have also expressed concern about the lack of a national policy for rare diseases.

To know more about rare diseases, click on the link.

About the National Policy for Rare Diseases, 2021:

• • The Rare Diseases Policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium to be set up with the Department of Health Research, Ministry of Health & Family Welfare as convenor.  
  • Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases. 
  • The policy also envisages the creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development related to rare diseases within the country.
  • 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.
• Financial assistance:
• • A provision for financial support up to Rs. 20 lakhs under the Umbrella Scheme of Rashtriya 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. 

For the classification of rare diseases under the new Policy, check the page for rare diseases in the link given above.

Read previous PIB here.

April 3rd, 2021, PIB:- Download PDF Here