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Improve Cure Rate of Children with Retinoblastoma: The AMCC Programme in Sub-Saharan Africa
Karim Assani1, Laurence Desjardins2, Denis Malaise3
1Manager of AMCC Retinoblastoma Program, Kinshasa, DR Congo.
Insights
Alliance Mondiale Contre le Cancer (AMCC) improves retinoblastoma (RB) care in sub-Saharan Africa. This program supports 30 teams in 23 countries, aiming for 60% cure rates by 2030.
Area of Science:
- Global Health
- Oncology
- Ophthalmology
Background:
- Retinoblastoma (RB) poses a significant challenge in sub-Saharan Africa, with high incidence and mortality rates exceeding 80% in 2010.
- Limited healthcare facilities and late diagnoses contributed to poor outcomes for children with RB in the region.
Purpose of the Study:
- To establish and develop a comprehensive program for retinoblastoma care in sub-Saharan African countries.
- To improve early diagnosis, treatment, and outcomes for children with retinoblastoma through international collaboration and capacity building.
Main Methods:
- Initiated a 10-year program (2019-2029) involving training healthcare professionals, developing multidisciplinary teams (MDTs), and supplying essential medical equipment.
- Provided support for chemotherapy, facilitated data collection and publications, and implemented early diagnosis initiatives.
Main Results:
- The program currently supports 30 teams across 23 countries, demonstrating significant improvements in RB care.
- Mid-program, the initiative has shown that targeted support can substantially enhance diagnosis and treatment capabilities.
Conclusions:
- Continued efforts over the next five years aim to sustainably improve early diagnosis and achieve a cure rate of at least 60% for children with RB by 2030.
- The program focuses on preserving useful vision, particularly in bilateral retinoblastoma cases, contributing to better long-term quality of life.
Abstract:
Alliance Mondiale Contre le Cancer (AMCC) is a non-profit French association devoted to improving cancer care in poor countries. It is domiciled at Institut Curie (Paris, France), which is the multidisciplinary referent retinoblastoma (RB) centre in France. In sub-Saharan Africa the number of children with RB is high (about 2 000 out of 8 500 worldwide) as 40% of the population is less than 15 years old and the population growth rate is still 2.7% versus 1.1% for the whole world. Few health facilities were able to treat retinoblastoma in 2010. Diagnosis was often not possible or too late and mortality was high (over 80%) compared to Europe or the USA (mortality less than 5% since decades). Since 2011 we have started with the team in Bamako (Mali) a programme to develop the care for RB in sub-Saharan Countries. Demonstration was obtained that the situation could improve with some specific support. Since 2019, a 10-year programme (2019-2029) was initiated in sub-Saharan countries including training of ophthalmologists and ocularists, development of multidisciplinary teams (MDTs) with paediatric-oncologists, the supply of complementary ophthalmological equipment to allow conservative management in bilateral cases, support for chemotherapy in some countries, data collections and publications and early diagnosis actions. To-day, halfway through the programme's deployment, it is supporting 30 teams in 23 countries: French speaking and some English and Portuguese speaking countries. Efforts will continue over the next 5 years to improve sustainably early diagnosis with the aim of curing at least 60% of all children with RB in 2030 with preservation of a useful vision for most of the bilateral cases.
