NEW DELHI: No states other than Karnataka availed a central scheme which subsidises costly treatment of rare diseases, revealed sources in the Union Ministry of Health and Family Welfare.
In 2017, the Centre came up with a National Policy for the Treatment of Rare Diseases and suggested a corpus of Rs 100 crore to help a few patients.
A government official said, “This was done at the behest of a Delhi High Court order and it was agreed upon that the Centre-state share in the corpus will be 60:40.
“Eventually all the states were asked to identify patients and send their treatment estimates. However, except for Karnataka, we have not received any communication from any other state so far,” added the official.
Sources further said that the southern state had sent a list of about 20 patients who could benefit from the scheme.
There are about 450 recorded rare diseases in India, including thalassemia, sickle-cell anaemia, pompe disease, Gaucher’s disease. The treatment for a child weighing 10 kg costs between `18 lakh to `1.70 crore annualy.
Prasanna Shirol of the Organisation of Rare Diseases of India said, “Even though it’s extremely difficult for families to afford such heavy costs, there have been little intervention on the part of governments so far.
“However, its heartening to see that at least some steps are being taken and states like Karnataka, Delhi and Tamil Nadu have brought it on their health priority lists,” added he.
The Delhi government had recently become the first governing body in India to announce an allocation of Rs 100 crore for patients of such diseases while Tamil Nadu is in the process of setting up a centre of excellence specifically for this cause.
What is a rare disease?
A rare disease is a health condition which has a low prevalence and affects a small number of people. They include genetic diseases, rare cancers, infectious tropical diseases
and degenerative diseases. They are often chronic, life threatening and often result in some form of handicap.