If a particular segment of the population is affected by a disease at a very low rate, then it would be called a ‘rare disease’.
The extent to which a disease can be treated will also decide whether the disease is rare or not.
As per the World Health Organisation, a rare disease is the one that occurs in 6-5-10 in 10,000 people.
A survey states that there are 30 crore people globally with seven thousand ‘rare type’ diseases.
As far as the Indian lineage of rare type diseases is concerned, it includes hereditary cancer, immunity distortion, disabilities by birth, Hers disease, Gaucher disease, Alveolar fibrosis, flat head syndrome, Lysosomal storage disorder and so on.
The recent policy decision has come as a relief to the long-standing struggle.
Yet the estimate of funds allotted for those treatments that are already permitted by the Indian Medical Association is said to be from Rs 80 crores to Rs 100 crores.
The central government should extend the sharing of expenses with other states like that of Tamil Nadu, Kerala and Karnataka.
Whatever might be the shares of the states, this amount is not a big deal for the central government.
It is very important to allocate the necessary funds and save people from such rare diseases.