Govt Expands Rare Disease Care; Boosts Centres Of Excellence

The government on Tuesday stated that the issue of rare disease was first recognised in the National Health Policy, 2017, following that It was institutionalised through the launch of the National Policy for Rare Diseases, 2021, which positioned India among countries that have a comprehensive national framework for rare diseases.

Speaking at a conference, Union Health Secretary Punya Salila Srivastava said the central purpose is to figure out the challenges faced by participants, foster innovations and fresh thinking to improve management of rare diseases in the country. She emphasised that the Centres of Excellence (CoEs) are key to implementing the policy, which are leading tertiary hospitals nationwide.

Over the years, the number of CoEs increased from 8 to 15, including two CoEs in north-east India, boosting the national architecture for clinical care and support.

The Union Health Secretary added that the policy has consistently raised financial assistance to ₹50 lakh, enabling better access to treatment for patients with identified rare diseases.

Highlighting the rising cost of therapies, Punya Salila Srivastava stated that the government has taken timely measures to waive life-saving drugs from basic customs duty, with additional measures announced in the latest Union Budget. She also urged stakeholders to recommend additional drugs that may considered for such exemptions.

Appreciating the contributions of the Indian Council of Medical Research, Punya Salila Srivastava noted its role in advancing indigenous research and development of therapies for rare diseases.

Progress Over Three Decades

Dr Rajiv Bahl, Secretary, Department of Health Research (DHR) and Director General, Indian Council of Medical Research, highlighted the substantial progress made in the field of rare diseases over the past three decades. He noted that in the 1990s, identifying a patient with a suspected rare disease often led to a sense of helplessness, as diagnosis was extremely difficult and treatment options were virtually unavailable.

Dr Rajiv Bahl said the progress since then reflects a broader shift in healthcare priorities, with increasing attention not only to common illnesses but also to rare, often genetic conditions. He stressed the need for India to develop a context-specific model for the diagnosis, treatment and prevention of rare diseases, instead of relying solely on Western frameworks.

Highlighting ongoing efforts, he said the Indian Council of Medical Research (ICMR) is working to expand the range of tools available for managing rare diseases.

Dr Sunita Sharma, Director General of Health Services, emphasised the importance of strengthening health systems to enable early diagnosis and comprehensive management. She called for integrating rare disease services across all levels of healthcare to ensure timely referrals and continuity of care through an efficient network.

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