India has achieved near-universal access to retinoblastoma (eye cancer) care for children, a milestone that NITI Aayog Member (Health) M. Srinivas on 17 May 2025 described as a globally replicable model at the National Retinoblastoma Conclave held at Constitution Club, New Delhi. The conclave brought together clinicians, policymakers, civil society leaders, and survivors to chart the next phase of the decade-long collaborative effort.

Key Developments at the Conclave

Delivering the chief guest address, M. Srinivas said, 'India is showing the world that collaborative, patient-centred systems can make near-universal childhood cancer access possible even in a resource-constrained setting.' He described Fight Retinoblastoma India as 'a remarkable model of stakeholder collaboration for patient-centred healthcare.'

Dr Pankaj Arora, Director of the National Health Authority (NHA), acknowledged the progress made and outlined what remains: 'The next frontier is ensuring 100 per cent financial protection for every child and family, while working towards global survival outcomes through stronger systems, partnerships, and continuity of care.'

What Experts Are Calling For

Poonam Bagai, Member of the ICMR Central Ethics Committee on Human Research, founder of CanKids, and the WHO South East Asia Region Representative for Childhood Cancer International, backed proposals for a National Retinoblastoma Helpdesk and Expert Network targeting 80–90 per cent survival outcomes and 100 per cent financial protection. She said, 'Retinoblastoma has shown us what is possible when clinicians, survivors, parents, researchers, government, hospitals, and civil society work together with the child and family at the centre. India is fighting retinoblastoma — and we are winning.'

Dr Santosh Honavar from Hyderabad recommended that the government consider launching a formal National Retinoblastoma Programme and expanding tertiary treatment hubs to improve outcomes. Panellists also urged the NHA to raise package rates for high-cost procedures including intra-arterial chemotherapy, intra-vitreal chemotherapy, and brachytherapy.

Financial Relief Demands

Several speakers called on the Ministry of Finance to exempt chemotherapy drugs from GST and to waive customs and import duties on high-cost diagnostic and treatment equipment. These demands reflect the financial strain that retinoblastoma treatment places on families, particularly in lower-income brackets where out-of-pocket costs remain a barrier despite improved access.

A Decade of Collective Action

Retinoblastoma is a rare but highly curable eye cancer affecting young children, where early detection is critical to preserving both vision and life. India carries the largest retinoblastoma burden globally, with an estimated 1,500–2,000 new cases reported annually. Over the past decade, Fight Retinoblastoma India — a national multi-stakeholder platform facilitated by CanKids — has built a collaborative network of more than 90 treating centres across the country, integrating paediatric oncology and ocular oncology expertise to improve diagnosis, referral pathways, and continuity of care.

The conclave also marked the publication of the initiative's decade-long journey in the Indian Journal of Ophthalmology (IJO), through the article titled 'Fight Retinoblastoma India: A Decade of Collective Action, Collaboration and Patient-Centred Care.' With calls for a formal national programme and stronger financial safeguards, the push is now on to convert a model of access into a model of cure.