No policy for rare diseases, govt declares ‘one-time financial assistance’

Note4Students

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


News

  • 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?

  1. 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.
  2. Some common rare diseases are Haemophilia, Pompe disease, Thalassemia, Sickle-cell Anaemia and Gaucher’s disease
  3. 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

  1. The standing finance committee has approved a proposal for adding a sub-component under the umbrella scheme of Rashtriya Arogya Nidhi (RAN).
  2. 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
  3. 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.
  4. The cost of treatment varies from Rs 18-70 lakh according to the govt. study.
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