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India’s Rare Disease Framework: A Global Model for Care and Innovation

India has positioned itself among countries with a comprehensive national framework for rare diseases through the National Policy for Rare Diseases, 2021. The policy is implemented via Centres of Excellence, which have expanded from 8 to 15, including two in northeast India. Financial assistance has been increased to Rs 50 lakh, and life-saving drugs have been exempted from basic customs duty. The Indian Council of Medical Research is actively working on indigenous research and context-specific models for diagnosis and treatment.

Key Points: India's Rare Disease Policy: Comprehensive National Framework

  • India’s National Policy for Rare Diseases (2021) provides a comprehensive framework
  • Centres of Excellence expanded from 8 to 15, including two in northeast
  • Financial assistance raised to Rs 50 lakh; life-saving drugs exempted from customs duty
  • ICMR focuses on indigenous R&D for rare disease therapies
3 min read

India among countries with comprehensive national framework for rare diseases: Govt

India's National Policy for Rare Diseases positions the country among global leaders. Learn about expanded Centres of Excellence, financial aid, and indigenous research.

"The need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and was subsequently institutionalized through the launch of the National Policy for Rare Diseases, 2021 - Government statement"

New Delhi, May 5

The government on Tuesday said that the need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and was subsequently institutionalized through the launch of the National Policy for Rare Diseases, 2021, which has positioned India among countries with a comprehensive national framework for rare diseases.

Addressing a conference here, Union Health Secretary Punya Salila Srivastava said the core objective is to understand the challenges faced by stakeholders, encourage innovations, and generate new ideas for strengthening the management of rare diseases in the country.

She highlighted that the policy is implemented through Centres of Excellence (CoEs) , which are premier tertiary hospitals across the country.

The number of CoEs expanded from 8 to 15 over the years, including two CoEs in the north-east India, strengthening the national architecture for clinical care and support.

The Union Health Secretary also informed that the financial assistance under the policy has been progressively enhanced to Rs 50 lakh, enabling improved access to treatment for patients suffering from identified rare diseases.

Acknowledging the rising cost of therapies, she informed that the government has taken proactive steps to exempt life-saving drugs from basic customs duty, with further expansion announced in the recent Union Budget.

She also encouraged stakeholders to suggest additional drugs that may be considered for such exemptions.

Expressing appreciation for the contributions of the Indian Council of Medical Research, she highlighted its role in advancing indigenous research and development of therapies for rare diseases.

Dr Rajiv Bahl, Secretary, Department of Health Research (DHR) and Director General, Indian Council of Medical Research, reflected on the significant 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.

He emphasized that this evolution reflects a broader shift in healthcare priorities, where attention is not only given to common diseases but also to those affected by rare, often genetic conditions.

Dr. Bahl underscored the need for India to develop its own context-specific model for diagnosis, treatment, and prevention of rare diseases, rather than relying solely on Western frameworks.

Highlighting ongoing efforts by ICMR, Dr. Bahl stated that the Council is actively 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 for early diagnosis and comprehensive management of rare diseases. She highlighted the need to integrate rare disease services across different levels of healthcare, ensuring timely referral and continuity of care through an efficient network of facilities.

- IANS

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Reader Comments

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Priya S
Rs 50 lakh assistance sounds good on paper, but when you see the actual cost of life-saving therapies, it's still a drop in the ocean. The customs duty exemption is helpful though. We need more indigenous research - that's the real game changer. Dr. Bahl's point about developing our own model is bang on! 👏
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Michael C
As someone who works in healthcare research, I appreciate the government's efforts. But we need to talk about the high cost of orphan drugs. Even with subsidies, most families can't afford these treatments. The ICMR should focus on producing biosimilars locally to bring costs down.
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Rohit P
Good initiative, but why only 15 CoEs? For a country of 1.4 billion, that's woefully inadequate. My friend from Bihar had to travel to Delhi for rare disease treatment - imagine the cost and burden on families. We need at least one CoE in every state, especially in tier-2 cities. Still, I'm happy to see some progress after so many years of neglect. 🙏
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Kavya N
This is heartening! As a medical student, I remember learning about rare diseases and feeling hopeless about treatment options in India. The focus on early diagnosis and integrating services across healthcare levels is crucial. But we need to train more doctors to recognize these conditions - many rare diseases are misdiagnosed as common illnesses. 💪
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David E
Impressive that India is developing its own framework instead of just copying Western models. The cost of treating rare diseases in the US is astronomical. If India can crack this with affordable indigenous solutions

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