News: Union Ministry of Health and Family Welfare published a national policy for treatment of rare diseases, listing 450 diseases as rare.
Rare Disease: It is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. Example: Haemophilia, Thalassemia, Sickle cell anaemia, auto-immune diseases etc.
National Policy for Treatment of Rare Diseases
Three Categories of Rare Diseases:
- diseases requiring one-time curative treatment,
- diseases which need long-term treatment but the cost is low, and
- diseases that require life-long treatment and the cost is high
Key measures suggested
- Arriving at a definition of rare diseases suited to India
- Creating a patient registry for rare diseases housed in ICMR
- Strengthen laboratory networks for diagnosis of rare diseases
- Centre to provide assistance of Rs 15 lakh to patients suffering from rare diseases that require one-time curative treatment under the Rashtriya Arogya Nidhi scheme
Rashtriya Arogya Nidhi scheme: It provides financial assistance to patients, living below poverty line and who are suffering from major life threatening diseases, to receive medical treatment.