The hidden burden of eye cancer in India and the cost of looking away

Eye cancer is not spoken about very often, given that it accounts for just around 0.5% of all cancer cases. But that small percentage translates into fairly large numbers. . While the absolute numbers of patients with eye cancer may not be comparable to that of say, breast cancer, the fact is that India diagnoses more children with eye cancer than any other country. A comment published in The Lancet Global Health in 2022 estimated that around 2,000 children are affected each year in India, a figure that is nearly 50% more than China and six times more than the United States.

Retinoblastoma and treatment challenges

Retinoblastoma, the commonest intraocular malignancy in the paediatric age group, develops in the retina and typically affects children under the age of five. When detected late, it can result not only in loss of sight but in loss of the eye itself.

India has a few institutions capable of treating eye cancers with advanced therapies that in many cases, save both life and vision. Yet the challenge is not with medical capability, but cost. While public health insurance programmes have led to an improvement in access to cancer treatment for many patients who otherwise would not be able to afford treatment, the specialised therapies required for retinoblastoma are not always fully covered. Advanced treatment required such as intra-arterial chemotherapy can cost ₹80,000 to ₹1.5 lakh per cycle in Indian centres and procedures such as plaque brachytherapy may cost several lakhs in specialised hospitals. For families without private insurance, this leads to difficult financial choices at a critical point in treatment. Expanding coverage for such specialised care will help ensure that no child’s chance of vision or survival is limited by financial constraints.

Other eye cancers

Retinoblastoma, however, is only one part of the larger picture of eye cancer in India. An analysis of 9,633 cases in India published in 2021, found that the most common malignant eye tumours were retinoblastoma, ocular surface squamous neoplasia, and sebaceous gland carcinoma of the eyelid.

Sebaceous gland carcinoma is particularly notable in the Indian context. It accounts for over half of eyelid malignancies in India, a proportion far higher than in Western countries where the tumour is considered rare. Conversely, uveal melanoma, the most common eye cancer in the West is relatively uncommon in India.

Barriers to care

With adult patients too, economic constraints contribute to delays in diagnosis. Geography adds to these challenges with patients from rural India frequently presenting late, having to travel the farthest for care, and facing the greatest financial constraints. This tragically leads to a parent learning that a child’s eye cannot be saved, not because treatment does not exist, but because the family could not reach specialised care in time. 

The economic impacts of vision loss are significant. A study published in the Indian Journal of Ophthalmology in 2022 estimated that visual impairment and blindness cost India about ₹1,158 billion annually, or roughly 0.57% of the GDP. A significant portion of this arises not from treatment costs, but reflects lost productivity and the income forgone when working-age individuals lose their sight to diseases that could often have been treated earlier.

Action needed

Bridging this financial and geographical gap requires action at several levels. Promoting greater awareness and earlier detection is important. Paediatricians, general practitioners and community health workers must be trained to recognise early warning signs such as leukocoria, the white reflex sometimes visible in a child’s pupil, and a new-onset squint. This can help in early diagnosis. In high-income countries, where early detection is routine, retinoblastoma survival exceeds 90%. In lower-resource settings where diagnosis occurs late, survival can fall to around 40%.

Also, stronger referral systems and wider access to specialised ocular oncology centres can help bring treatment closer to patients who currently travel long distances for care. Greater financial protection for specialised therapies can reduce the burden on families of patients who need complex treatments. Equally important is investing in rehabilitation, low-vision care and educational support, so that children who do lose vision can still lead independent and productive lives.

Finally, India can benefit from a dedicated national ocular cancer registry. Reliable data on incidence, stage at presentation, treatment patterns and outcomes remain limited, making it difficult to estimate the true burden of disease. A national registry will provide the epidemiological foundation needed to guide policy and evaluate whether interventions are improving outcomes.

Focusing on the future

India already has the institutions, the expertise and the medical tools required to treat ocular cancers. But the obstacles to a cure are often not medical, but economic. And economic challenges, unlike biological ones, are within our power to overcome. The next step is ensuring that these advances reach every patient who needs them. When early detection, accessible specialised care and financial protection come together, outcomes can change dramatically.

(Dr. Anusha Venkataraman is senior consultant & surgeon – vitreo retina and ocular oncology, ASG Vasan Eye Care, Coimbatore. anushavenkat262@gmail.com)

Published – March 17, 2026 03:00 pm IST