India Establishes First National Policy on Research, Treatment of Rare Diseases

Moving to improve coordination of all aspects of rare disease research and treatment, India has approved its first-ever national policy on the prevention and management of such conditions, which afflict a small percentage of the population and are costly to remedy.

The announcement on March 30 that the Health Ministry had approved the “National Policy for Rare Diseases 2021” represents an acknowledgment that a comprehensive government plan is needed to better diagnose, manage and treat rare diseases. The conditions, often genetic in origin, are difficult to research because the pool of patients afflicted with them is very small.

India has taken some steps in the past to address the issue. In January 2019 its government lifted price controls on orphan drugs that treat rare medical conditions and other groundbreaking drug therapies developed by foreign companies. But an adequate plan has been lacking. India has no registry of rare diseases and no funding allocated to research into them.