One World, One Vision: providing equitable care for retinoblastoma
From October 25th to 28th, specialists from around the world met in downtown Toronto for the One Retinoblastoma World Conference. Retinoblastoma is the most common intraocular malignancy of childhood, with an incidence of around 1 in 15,000 live births.1 There are approximately nine thousand new cases per year with a global mortality rate of 70%. However, with early diagnosis and comprehensive referral, treatment and follow-up, 95% of children with retinoblastoma are cured, many with salvaged eyesight.2
The high global mortality rate of retinoblastoma is an affect-laden axis of poverty, lack of resources, the lack of pathology guidelines and inadequate medical training. In the sphere of scientists and health-providers, there are also misguided apprehensions of psychosocial impacts on the child, secondary cancers and genetic risks. Due to the lack of national retinoblastoma guidelines, many doctors may attempt to save dangerous eyes prone to metastases just to prevent the child from going blind. Furthermore, there is a lack of attention devoted to cancer survivorship. Even after surviving retinoblastoma, patients have to face the risk of secondary cancers later in life. Patients with enucleated, surgically removed, eyes frequently are victims of stigma against blindness.
In an attempt to address these gaping conundrums of retinoblastoma, researchers and health-providers met over this four-day conference for in-depth discussions on the challenges that lay ahead. Rallying under the term “One Retinoblastoma World”, attendees proposed goals for the coming years’ retinoblastoma strategy. First, attendees agreed that due to the rarity of retinoblastoma and lack of resources allocated to research, the only way to move forward was to reunite the experts and let institutional loyalty take a backseat. Second, health-providers and researchers will work on creating national guidelines for retinoblastoma. There has been great progress made in drafting the Kenyan and Canadian National Retinoblastoma Guideline. However, more work needs to be done galvanizing the adoption and implementation of guidelines by recognized institutions such as the World Health Organization and respective governments.
Finally, health-providers must put life before eyes. There must be extensive awareness campaigns informing health providers and patients of the high mortality of eye salvage. Though blindness is frightening, it does not necessarily mean the patient cannot live a normal life. There needs to be recognition of the possibility of life beyond the disease. There also needs to be more focus on quality of life for survivors, including providing psychosocial and monetary support to those who are blind.
The conference also launched the One Retinoblastoma World website (1rbw.org), a retinoblastoma world map spearheaded by Sickkids researcher and University of Toronto Associate Professor, Dr. Helen Dimaras. This map contains retinoblastoma treatment centers all over the world. Upon typing a location, the map immediately shows the closest retinoblastoma treatment centers, the facilities and procedures available, members of staff, contact information and statistics on past retinoblastoma cases treated at the center. This world map is one step closer to equitable access to care, regardless of one’s geographic location. By compiling relevant information concerning retinoblastoma treatment on a user-friendly, accessible forum, patients are more likely to locate health-providers and begin treatment for retinoblastoma. Through evidence-based care coupled with early detection and treatment, health-providers are one step closer to saving the lives and vision of retinoblastoma patients.
References
Seregard S, Lundell G, Svedberg H, Kivela T. Incidence of retinoblastoma from 1958 to 1998 in Northern Europe: advantages of birth cohort analysis. Jun 2004;111(6):1228-1232.
Canada CCSNCIo. Canadian Cancer Society/National CancerInstitute of Canada: Canadian Cancer Statistics. April 2008.