The Need
Childhood blindness
childhood cancer
Raising Awareness
Global Rb Strategy
Rati's Challenge
Rb care in Africa
Retinoblastoma Book
World Rb Citizen Award
Blindness from retinoblastoma is largely determined by the awareness among families and the primary health care community, and availability of specialist eye care services.
In developing countries, a blind child is many times more likely to die before the age of 14 than a sighted child. Most blind children in these countries have limited or no access to education, and many are forced into a lifetime of begging to survive.
There is a level of urgency when treating retinoblastoma, not only because this is a life threatening cancer, but also because the visual system develops throughout early childhood. The visual cortex of the brtain requires stimulation through transmission of clear images. Failure of this normal visual development cannot be corrected in adult life.
A child’s eye cannot be considered a smaller version of an adult eye. Medical examination and care of children with retinoblastoma requires time and expertise because the visual system is immature. the eye is very small and children respond differently to medical and surgical treatment.
Loss of sight can be prevented for most children blinded by retinoblastoma. In order to prevent blindness, parents and primary health workers must be able to recognise a "white pupil" as an early sign of tumour growth. Children must then be referred to physicians experienced in the use of eye-salvage therapies.
Preventing childhood blindness is a priority within the World Health Organization’s ‘VISION 2020 – “The Right to Sight” program. Strategies need to be disease and region specific, including community-level prevention programs, health education, and the provision of regional facilities for eye conditions that require specialized care.
Chilchood Cancer
Cancer kills more people worldwide than AIDS, tuberculosis, and malaria combined, accounting for more than 12% of all deaths worldwide.
More than 96% of children with retinoblastoma are cured in developed countries. However, global population distribution means that 92% of children with retinoblastoma live in economically less developed countries. Global survival is still less than 20%.
Though curative therapy is available in almost every country, retinoblastoma is frequently a death sentence for these children. Death is due to
delayed diagnosis, when retinoblastoma has spread beyond the eye;
sub-optimal application of resources due to delayed and incomplete pathology reports following surgery to remove affected eyes;
inadequate resources to support family care, when the cost of medical bills, travel to access treatment, lack of family accommodation near hospital and fear of mutilation and blindness upon removal of the eye forces abandonment of therapy.
Tackling the global issue of cancer is a major focus for the World Health Organisation, especially in the developing world.
During the 2000 World Summit Against Cancer for the New Millennium, organisations from around the world adopted the Charter of Paris, acknowledging that the majority of cancer deaths around our world can be prevented by improving access to currently available drugs.
The Charter calls for “an invincible alliance – between researchers, healthcare professionals, patients, governments, industry and media – to fight cancer and its greatest allies, which are fear, ignorance and complacency.”
What can be done?
Retinoblastoma is a potentially blinding and fatal cancer, yet it is also one of the most curable cancers in children.
We design and promote awareness activities to acheive early diagnosis and referral.
We are developing guidelines to achieve common standards of care, that can be adapted for use in diverse regions of the world.
We have initated a Model National Strategy for Developing Countries to facilitate simple key changes that can optimise locally available resources and dramatically reduce mortality
We are expanding our World Retinoblastoma Survey to encourage national registries and a global registry that can increase knowledge and support vital research
We aim to stimulate development of a World Retinoblastoma Research Group to enable collaborative studies that can overcome the challenge of rarity, and effectively validate approaches to care.
These simple initiatives can save many precious young lives in developing countries, and increase the chances of saving vision in countries where survival is already high.
Building sustainable, coordinated local capacity in retinoblastoma care can rapidly shift global survival closer to that achieved in resource-rich countries. Expenditure on unnecessary or inappropriate tests and therapies can also be significantly reduced, and burdens currently place on families can be relieved.
The hurdles are great, but it is entirely possible to work towards a day when no child faces death or blindness from retinoblastoma.
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