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Estibaliz Urarte
Communications Manager

Objective: increasing survival rates for children with cancer

Children playing with chalks
Childhood cancer is rare, so it often lacks adequate treatments and accurate diagnosis. Although children from high-income countries have big chances of recovery comparing to adults, the picture in lower-income countries is very different.

More than 400,000 children and young people are expected to develop cancer every year. However, not all of them have the same chance to survive. In high-income countries (HICs), five-year survival rates exceed 80% while in lower-middle-income countries (LMICs) rates drop to 30%. This is mainly due to a series of dissimilarities experimented in LMICs when it comes to accessing the latest therapies and treatments and obtaining a diagnosis. These inequalities are disturbing, as about 89% of world’s children (0-19 years old) live in LMICs and they account for 95% of the children’s mortality from cancer worldwide.

Childhood cancer is different from adult cancer. It is the result of DNA changes in early stages of life and it often affects tissues that are not normally affected in adults: lymph system, blood cells, bones, liver and brain. These tumors spread differently and treatments also diverge. Childhood cancer is usually very rare; therefore, research is often scarce and many children still do not receive suitable treatments or cares or frequently obtain a late or wrong diagnosis.

The World Health Organization (WHO) has established in 60% the global survival target for children with cancer by 2030, which aims at saving thousands of children’s lives. But, will we be able to achieve that rate? What steps do we have to follow?

Dealing with late diagnosis is one of the key points to reach this objective. When a patient receives a delayed diagnosis it is more probable that the disease is more advanced, thus making it more difficult to be successfully treated. Empowering and educating the families can be decisive to fight delayed diagnosis. Implementing awareness materials in national health plans can even save lives. In Honduras, awareness materials on retinoblastoma were included into national immunization platforms across health centres and the proportion of patients that presented advanced retinoblastoma decreased significantly.  


Another issue to be tackled is diagnostic failure. The lack of trained professionals and specialised laboratory equipment and techniques may affect the final medical conclusion. Patients in sub-Saharan Africa, for example, can be misdiagnosed in 18 to 35% of cases.

Treatment-related toxicity is also quite problematic in LMICs. Patients need nutritional support, management of infections and aggressive hydration to prevent tumour lysis syndrome and other toxicities associated to radio or chemotherapy, but many children do not have the opportunity to receive the right cares.  

Treatment abandonment is rare in HICs but it is a major contributor for treatment failure in many LMICs. Factors for treatment abandonment include poverty, cost of the treatment, lack of insurance, low educational level of parents, distance from the healthcare centre, cancer type and patient gender. It has been shown that government support is important in these cases and that educational campaigns are effective.

Moreover, we cannot forget that not all children have access to essential medicines. Also, children from LMICs do not have the same opportunities to enrol in clinical trials or to participate in research and this has been proven as a key factor to increased survival rates. As many paediatric tumours are rare and there is a lack of patients to conduct research, it is essential to engage LMIC partners to speed up studies and medicines development. As we often say in Share4Rare: together we are stronger!

In this scenario, Share4Rare would like to do its bit to increase global survival rates of children with cancer by connecting patients all around the world and enhancing research in a group of rare paediatric tumours, such as gliomatosis cerebri, xeroderma pigmentosum, paediatric melanoma, retinoblastoma, acute lymphoblastic leukaemia or pancreatic rare tumours, among others. Thanks to the participation of families and caregivers in our research projects, we believe that we will be able to improve the scientific knowledge on a great number of rare cancers, which will ultimately lead to an improved diagnosis and to better-quality standards of care. Education and collaborative research are two of Share4Rare’s pillars and we need the patients and families to join our platform to contribute to this remarkable goal: increasing survival rates for all children with cancer around the world!

Source: Lam et al. Science and health for all children with cancer (2019) Science. 363, 1182-1186

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Acute lymphoblastic leukaemia
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Proteus syndrome
Solid pseudopapillar neoplasm of the pancreas
Xeroderma pigmentosum