Mains Paper 2: Governance | Issues relating to development and management of Social Sector/Services relating to Health, Education, Human Resources.
From UPSC perspective, the following things are important:
Prelims level: Rare Diseases
Mains level: Effectiveness of one-time financial assistance for the treatment of rare diseases
- Days after withdrawing the national policy for treatment of rare diseases (NPTRD), the Union health minister announced a ‘one-time financial assistance’ in Parliament.
What are Rare Diseases?
- India does not have a definition of rare disease. However, World Health Organization (WHO) defines rare disease as often debilitating lifelong disease or disorder condition with a prevalence of 1 or less, per 1,000 population.
- Some common rare diseases are Haemophilia, Pompe disease, Thalassemia, Sickle-cell Anaemia and Gaucher’s disease
- India has recorded 450 of such rare diseases, according to the NPTRD 2017
Rare diseases in India
The most common rare diseases recorded in India are Haemophilia, Thalassemia, sickle-cell anaemia and primary immuno deficiency in children, auto-immune diseases, Lysosomal storage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies.
One-time Financial Assistance
- The standing finance committee has approved a proposal for adding a sub-component under the umbrella scheme of Rashtriya Arogya Nidhi (RAN).
- It would include a provision of one-time financial assistance to those below threshold poverty line for specified rare diseases which require one-time treatment
- While there is no registry of rare diseases patients in India, according to government’s own estimates, given in the national policy document, there are between 70-90 million patients.
- The cost of treatment varies from Rs 18-70 lakh according to the govt. study.