Issues in the treatment of ‘rare diseases’, and what the govt can do

News: Last week, the Delhi High Court had issued directions to improve the availability of ‘orphan drugs’.

1. Orphan Drugs: They are the medicines used to diagnose, prevent or treat an orphan (rare) disease.

2. Rare Diseases: World Health Organisation defines rare disease as a debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.

3. In India, rare diseases are classified into 3 groups: Group 1 diseases can be treated with one-time curative procedure, Group 2 diseases require long term or lifelong treatment, which are relatively less costly while Group 3 diseases have definite treatment available, but they are expensive and must often continue lifelong.

4. The National Policy for Rare Diseases (NPRD) was launched in 2021 by Ministry of Health and Family Welfare, under which financial assistance up to Rs. 50 lakh is provided to patients receiving treatment at an identified Centres of Excellence (CoE).