Context
In a written response in the Lok Sabha, Minister of State for Health and Family Welfare, Prataprao Jadhav, stated that under the National Policy for Rare Diseases, patients suffering from 63 identified categories of rare diseases will receive financial assistance of up to Rs. 50 lakh for treatment. This amount will be directly provided to the ‘Centers of Excellence’ (CoE), which specialize in advanced treatment for these diseases.
Why is this Policy Important?
Rare diseases (affecting fewer than 6 out of 100 people) impact approximately 7-8 crore people in India, including life-threatening conditions like GSD, cystic fibrosis, and hemophilia. Treatment is often long and expensive, placing a financial burden on poor families. This financial assistance will provide relief to such families.
About Rare diseases:
Rare diseases refer to medical conditions that affect a very small percentage of the population, often characterized by chronic, progressive, and life-threatening symptoms, making diagnosis and treatment challenging due to limited research and resources
Challenges posed by rare diseases:
· Diagnostic difficulties: Due to low prevalence, doctors might lack experience in recognizing rare diseases, leading to misdiagnosis or delayed diagnosis.
· High treatment costs: Often, treatments for rare diseases are expensive and not readily available in many healthcare systems.
· Lack of research: Limited research on rare diseases means fewer treatment options and less understanding of disease progression.
· Psychological impact: The burden of a rare disease can significantly affect the quality of life for patients and their families.
Examples of rare diseases:
Cystic Fibrosis, Hemophilia, Muscular Dystrophy, Severe Combined Immunodeficiency (SCID), and Gaucher Disease.
Government Efforts Against Rare Diseases
The government has taken various measures to tackle rare diseases. The Ministry of Health has established a National Consortium for Therapeutics for Rare Diseases to make treatment accessible and promote research. The aim of this consortium is to streamline research activities related to the treatment of rare diseases in the country.
Additionally, the Indian Council of Medical Research (ICMR) has formed the 'Extramural Program Task Force for Rare Diseases,' focusing on the diagnosis, treatment, and drug development for these diseases.
Development of Indigenous Medicine in the Country
ICMR has launched 19 research projects under the ‘Therapeutics for Rare Diseases for Indigenous Therapies’ initiative. These projects aim to develop affordable medicines by integrating local therapeutic methods with modern science. This initiative is seen as a significant step towards making the country self-reliant in the medical field.
