India rare disease policy expands care centres as treatment costs remain a challenge

India said the National Policy for Rare Diseases, 2021 institutionalized rare disease management and positioned the country among those with a comprehensive national framework for rare diseases. The number of Centres of Excellence expanded from 8 to 15, including two in northeast India, while financial assistance under the policy was progressively enhanced to Rs 50 lakh.

The government said the need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and that the policy is implemented through Centres of Excellence, which are premier tertiary hospitals across the country. It said the expanded network is strengthening the national architecture for clinical care and support.

At the same time, around 100 million Indians struggle to live with rare diseases, according to the Indian Organization for Rare Diseases, because they are hard to diagnose and expensive to treat. It can take up to five years to correctly diagnose a person with a rare disease, while proven treatments exist for only about 5% of rare diseases.

While the government offers a one-time Rs 50 lakh payout to patients for treatment, this is insufficient. Treating a rare disease can cost up to Rs 1 crore and more annually, by the government’s own admission.

The government said it has taken proactive steps to exempt life-saving drugs from basic customs duty, with further expansion announced in the recent Union Budget, and encouraged stakeholders to suggest additional drugs that may be considered for such exemptions. It also highlighted the role of the Indian Council of Medical Research in advancing indigenous research and development of therapies for rare diseases and said the Council is actively working to expand the range of tools available for managing rare diseases.

The government also said there is a need to strengthen health systems for early diagnosis and comprehensive management of rare diseases, and to integrate rare disease services across different levels of healthcare, ensuring timely referral and continuity of care through an efficient network of facilities.