Telangana government sits on rare disease record

Hyderabad: Despite the sanction of a corpus of Rs 100 crore for the treatment of rare diseases in India, there is no movement on implementing the National Policy for Treatment of Rare Diseases.

Telangana state has not even given data on the incidence of these diseases to the Centre. Only Tamil Nadu and Karnataka from among the South Indian states have submitted the incidence in their states to the Centre.

There are 7,000 diseases listed as rare in India. It is estimated that one in 20 Indians is affected by one of these diseases. 

There is some confusion about whether the policy is meant for above the poverty line or below the poverty line patients, but health advocacy groups state that the question of APL and BPL is irrelevant in these cases.

The Central Technical Committee formed at the Centre has to set up state wise committees to check the cases and recommend treatment. For this, the state health department has to ensure that the cases are followed up and required assistance provided to them.

A senior paediatrician said children are major sufferers of rare diseases. “Due to the government’s failure to provide assistance, there is crowd funding to help them. There is no other method till they (the government) take concrete action in terms of identifying, standardising who fits in their category of access to government grants and also gap funding. These have to be clearly defined so that the cases can be followed up from the state to the Central level.”