• UGI USER
  • Mar 01, 2024
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DESPITE POLICY BACKING AND FUNDING, ARE FOR RARE DISEASES NOT OPTIMAL

Why in the news?

World Rare Diseases Day highlights India’s ongoing challenges in rare disease care despite recent policy advancements, focusing on funding utilisation issues.

source:slideserve

Understanding Rare Diseases:

  • Rare diseases, affecting less than 1 per 1,000 population, lack effective treatments for nearly 95% of the estimated 7,000-8,000 conditions in India.
  • While international definitions vary, India’s Organisation of Rare Diseases suggests a prevalence of 1 in 5,000 people or less.
What are Rare diseases?

●   Rare diseases comprise 6,000-8,000 classified conditions, with less than 5% having available treatments.

●   India hosts approximately 50-100 million affected individuals, mostly children, facing high morbidity and mortality rates.

●   These diseases range from affecting 1 in 10,000 to 6 per 10,000 people and often lead to serious, chronic, and life-threatening conditions.

What is the National Rare Disease Policy 2021?

●   Aim: Enhance indigenous research, lower treatment costs, and promote early detection of rare diseases.

●   Objectives: streamline healthcare delivery for rare diseases in India.

●   Major Provisions: Categorizes diseases into three groups based on treatment needs.

o   Group 1: Curative treatment feasible.

o   Group 2: Requires long-term treatment.

o   Group 3: Treatment available but challenges like high cost and lifelong therapy.