Retinoblastoma (Rb) is the most common eye cancer in childhood, and in high income countries is regarded as generally curable, with nearly no children dying. In many countries however, there is no capacity to provide even basic treatment for the condition.
Afghanistan currently has a very disrupted healthcare service, with a quarter of the population lacking access to healthcare. Eye care services are concentrated in urban areas and there are no specialised Rb treatment centres. To address this, in 2023 a group of experts in the field suggested a ‘silk road’ (referring to ancient trade routes) programme, whereby children with Rb in Afghanistan could be treated in Pakistan.
Over a year, children that presented at local eye care centres in Afghanistan (National Organization for Ophthalmic Rehabilitation – NOOR) and were recommended for treatment in Pakistan were studied. Initial examinations were performed by the NOOR team, with diagnosis confirmed through an online consultation with the “Silk Road” team of international Rb specialists.
Twenty-six children presented to NOOR centres with suspected Rb during the study period, and 23 were included in the analysis. Thirty percent of children had Rb in both eyes and five of the children had extraocular disease, where the tumour has spread beyond the eye.
Only 9 of the children (39%) were effectively transferred to Pakistan for treatment. The main barriers to patients being transferred were:
- Acquiring visas / border passes – 2/23
- Loss in translation – 8/23
- Challenges at the border – 12/23
- Financial constraints – 11/23
- Initial loss to follow-up – 6/23
For children that did arrive at centres in Pakistan, 8 underwent enucleation (having the affected eye removed) and 4 had chemotherapy.
At a recent follow-up, 5 (22%) of children had died, 6 were confirmed alive and 12 were uncontactable.
The authors found several difficulties during the programme, including technical failures and sociopolitical changes that hindered the identification and treatment of patients.
With a crude birth rate of 29.1, the projected annual incidence of Rb in Afghanistan is 74 cases. However, during this study only 23 children with confrmed Rb were reported nationwide, demonstrating a major gap in the diagnosis of Rb across the country. In the absence of treatment centres or other formal referral pathways, most of these children will have died.
Of those that were studied, the 22% children that died is in contrast to high-income countries, for instance the UK where only 1-2% of children with the disease will die.
The study highlights the deep inequities in Rb care globally, and the precarious healthcare situation in Afghanistan currently. While services are lacking this ‘silk road’ programme can provide an interim solution for some children with Rb. Further refinement of the referral pathway is needed, as efforts to establish a formal Afghani Rb treatment centre continues to be explored.
Publication
Arazi M, Kfir J, Sediqi SM et al. Afghanistan–Pakistan retinoblastoma “Silk Road” referral pathway. Eye (2025). https://doi.org/10.1038/s41433-025-03823-0