[Jan] Rare diseases & government Flashcards
Context?
The Delhi High Court has ordered the Health Ministry to explore crowdfunding to help two children suffering from a rare disease known as Duchenne Muscular Dystrophy, in importing exorbitantly priced medicines.
why responsibility on health ministry?
‘Right to Health and Healthcare’ is a fundamental right which has been recognised by the Supreme Court to be a part of the ‘Right to life’ of the Constitution.
what does the Draft Health Policy for Rare Diseases, 2020 says in this regard?
“in certain cases since the government cannot fully finance the treatment, the gap can be filled by seeking donations from prospective individuals or corporate donors”
What is rare disease?
A rare disease is a health condition of particularly low prevalence that affects a small number of people compared with other prevalent diseases.
Examples of rare disease?
Haemophilia, Thalassemia, sickle-cell anaemia, 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 types of muscular dystrophies are most common types of rare diseases recorded in India.
