Health Ministry Makes Renewed Push To Strengthen India’s Policy On Rare Diseases At National Conference

New Delhi: Marking a renewed push to strengthen India’s policy, research, and treatment ecosystem for rare medical conditions, the Ministry of Health and Family Welfare (MoHFW) on Tuesday inaugurated a two-day national conference on rare diseases in the national capital.

Stressing the importance of awareness generation, early diagnosis, and capacity building, health secretary Puniya Salila Srivastava noted that genetic analysis and timely detection are crucial in managing rare diseases. "The core objective of the conference is to better understand stakeholder challenges, foster innovation, and generate actionable ideas to strengthen rare disease management in India," Srivastava said.

The conference, which will continue till tomorrow, May 6, brings together policymakers, clinicians, researchers, and patient groups to deliberate on improving diagnosis, treatment access, and long-term care strategies for rare diseases.

Srivastava noted that the issue first received policy attention in the National Health Policy 2017 and was later institutionalised through the National Policy for Rare Diseases 2021, which has given the country a structured national framework.

"The policy is being implemented through Centres of Excellence (CoEs) located in premier tertiary hospitals. The number of such centres has expanded from eight to 15, including two in the Northeast, strengthening the country’s clinical infrastructure," she said.

Srivastava added that financial assistance under the policy has been increased to Rs 50 lakh per patient, significantly improving access to treatment.

Acknowledging the high cost of therapies, she said the government has exempted several life-saving drugs from basic customs duty, with further expansion announced in the recent Union Budget. She also urged stakeholders to recommend additional drugs for such exemptions.

Srivastava also highlighted progress under the UMMID Initiative, which supports genetic counselling and diagnostic services through NIDAN Kendras. "Around 1,800 patients have already received treatment support under the national policy," she said.

Rajiv Bahl, Secretary of the Department of Health Research and Director General of the Indian Council of Medical Research, reflected on the progress made over the past three decades. “While Rs 50 lakh support may still seem limited given the cost of therapies, it represents significant progress in our ability to support affected children,” he said, describing the government’s rare disease programme as a source of hope.

Bahl emphasised the need for India to develop its own context-specific models rather than relying solely on Western frameworks. He pointed to opportunities in population-based strategies, prevention, and the use of digital technologies, including artificial intelligence, to improve early detection and outreach.

He also highlighted ongoing efforts to indigenise therapies and promote domestic manufacturing of affordable drugs in collaboration with industry partners. "In addition, six repurposed drugs have been identified for potential use in treating rare diseases, with clinical efforts underway," Bahl said.

Sunita Sharma, Director General of Health Services, stressed the need to strengthen health systems for early diagnosis and comprehensive care. She called for better integration of services across all levels of healthcare, expansion of screening programmes, and adoption of standardised treatment protocols.