A Rare Opportunity | The Indian Express

A Rare Opportunity | The Indian Express

Written by Shilpi Bhattacharya, Diya Deviah |Updated: April 11, 2019 5:59:34 am

Shilpi Bhattacharya is associate professor at Jindal Global Law School. Bhattacharya is associated with World Without GNE Myopathy, a rare disease patient advocacy organisation.

Diya Deviah is a student at Jindal Global Law School. Deviah is associated with World Without GNE Myopathy, a rare disease patient advocacy organisation

A Rare Opportunity

New rare disease policy is a chance to create an inclusive public health imagination.

The government must not abandon the rare disease community to the market mechanism. Low incidence makes rare diseases “unprofitable” and companies are reluctant to invest in them.

Recent developments have not given the rare disease community much to celebrate. The suspension of the National Policy for the Treatment of Rare Diseases was a rude shock, particularly for those patients who were relying on the money allotted through the policy for life-saving treatments. A rare disease affects a small percentage of people. Most rare diseases are chronic and severe, leading to death or disability. Since these diseases are not found commonly, doctors are typically unaware about them and therefore either misdiagnose or do not diagnose them. This further decreases recorded incidence of the disease, which in turn diminishes interest in understanding the disease and finding treatments for it. This cycle of neglect can only be overcome by strong support from the government.