Government taking action on high cost of rare and orphan disease drugs in India

As the high price of orphan drugs continues to be a major issue, the Indian government is looking to exempt orphan drugs from price control. The government has decided to take legal and other measures to control the price of drugs for rare diseases in order to ensure their affordability and health system sustainability, reports The Pharma Letter’s India correspondent.

After formulating a national policy for rare diseases in 2017, the Indian government is preparing a registry of such diseases. A $14 million fund has also been set aside for the cause by the government giving a ray of hope to patients. The fund will look at genetic disorders like lysosomal storage disorders (LSDs) among others, and excludes hemophilia and some of the other blood disorders which are already getting funded for the last 10 years in India.

"The price of orphan drugs is very high. Some tend to cost as much as $400,000 annually. This is beyond the reach of many who are outside the purview of any drug price reimbursement scheme," said a government official.