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PIB 5th April 2021

CONTENTS

  1. NATIONAL POLICY FOR RARE DISEASES 2021
  2. SANKALP SE SIDDH

NATIONAL POLICY FOR RARE DISEASES 2021

Focus: GS II- Health

Why in news?

Union Health & Family Welfare Minister approved the “National Policy for Rare Diseases 2021”.

What is a rare disease?

  • A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.
  • Most rare diseases are genetic, and are present throughout a person’s entire life, even if symptoms do not immediately appear.
  • The commonly reported rare diseases, include:
  • Primary immunodeficiency disorders, Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, fabry disease etc.) small molecule inborn errors of metabolism (Maple Syrup urine disease, organic acidemias, etc.), cystic fibrosis, osteogenesis imperfecta, certain forms of muscular dystrophies, and spinal muscular atrophy.

Provisions of the National Rare Disease Policy 2021

  • Patients of rare diseases will be eligible for a one-tome treatment under the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY).
  • Financial support up to Rs20 lakh under the Umbrella Scheme of Rashtriya Arogaya Nidhi shall be provided by the central government for treatment of those rare diseases that require a one-time treatment (diseases listed under Group 1) for their treatment in Government tertiary hospitals only. – (NOT be limited to below poverty line (BPL) families, but extended to about 40% of the population as eligible under the norms of Pradhan Mantri Jan Arogya Yojana (PMJAY))

The policy has categorised rare diseases in three groups:

  • Disorders amenable to one-time curative treatment;
  • Those requiring long term or lifelong treatment; and
  • Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit.

The government has said that it will also assist in voluntary crowd-funding for treatment as it will be difficult to fully finance treatment of high-cost rare diseases.

Criticisms of the National Rare Disease Policy 2021
  • Though the document specifies increasing the government support for treating patients with a ‘rare disease’— from Rs 15 lakh to Rs 20 lakh — caregivers say this doesn’t reflect actual costs of treatment.
  • The Policy leaves patients with Group 3 rare diseases to fend for themselves due to the absence of a sustainable funding support.
  • What the policy doesn’t capture is that these are diseases that last a lifetime adding up to a huge amount of expenditure and many of the patients who can’t afford such treatment will be unable to even make it to the prescribed tertiary hospitals for treatment.
Constitutional Provisions in the context of the new policy for rare diseases
  • Article 38 says that the state will secure a social order for the promotion of welfare of the people. Providing affordable healthcare is one of the ways to promote welfare.
  • Article 41 imposes duty on state to provide public assistance in cases of unemployment, old age, sickness and disablement etc.
  • Article 47 makes it the duty of the State to improve public health, securing of justice, human condition of works, extension of sickness, old age, disablement and maternity benefits and also contemplated.

SANKALP SE SIDDH

Focus: GS II- Government policies and Interventions

Why in news?

TRIFED under Ministry of Tribal Affairs has launched “Sankalp se Siddhi” – Village & Digital Connect Drive.

About Sankalp se siddh

  • It is a 100 day drive which was stared from 1st of April.
  • The drive will entail 150 teams visiting ten villages each of which 10 in each region from TRIFED and State Implementation Agencies, visiting ten villages each.
  • The main aim of this drive is to activate the Van Dhan Vikas Kendras in these villages. 
  • The visiting teams will also identify locations and shortlist potential Van Dhan Vikas Kendras for clustering as TRIFOOD, and Scheme of Fund for Regeneration of Traditional Industries- SFURTI units as larger enterprises. 
  • TRIFOOD aims to enhance the income of tribals through better utilization of and value addition to the Minor Forest Produce collected by the tribal forest gatherers.
  • It is expected that Sankalp Se Siddhi will aid in effecting a complete transformation of the tribal ecosystem across the country.

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