High-quality data critical to better combat childhood cancer

The International Agency for Research on Cancer (IARC) said that providing better data would help reduce the burden of childhood cancer.
“To combat childhood cancer and inequality, the scale of the problem must be known”, UN experts warned, remarking that in “low-resource settings, survival rates are only about one quarter those in high-resource settings”. If in high-income countries, 80% of patients can be cured, in low and middle-income countries, only about 20% of children with cancer will survive.
According to the UN agency, the inequalities are due to a lack of awareness among health professionals, as well as a lack of efficient medical infrastructure and diagnostic and treatment facilities. Hence, “country of residence is the best predictor of outcome for children with cancer”, experts note.
According to WHO, proper and timely medical care would increase the survival rates significantly, but many young people in those countries are not receiving the right treatment.
Also, the lack of infrastructure and high-quality cancer registries in many low-income countries means that data outlining the burden of childhood cancer are scarce. For example, information on cancer incidence is available for only 5% of Africa’s child population, and survival rates are available for an even smaller percentage.
WHO data shows that compared with adults, children are affected by different types of cancer. Almost half of childhood cancers are blood cell-related, and the most frequent other malignancies are tumours of the central nervous system and tumours that develop from embryonal tissues.
To help better understand and fight childhood cancer, IARC has joined the recently formed WHO Global Initiative for Childhood Cancer, which seeks to reduce inequalities in access to diagnosis and in quality of treatment, and improve treatment outcomes for all children.
According to IARC scientist Dr. Eva Steliarova-Foucher, the research agency is able set to offer “valuable technical support to help countries build their information systems and use data on cancer incidence, survival, and mortality for cancer control planning, monitoring, and evaluation.”
“Many countries are unaware of the extent of the childhood cancer burden,” IARC Director Dr. Elisabete Weiderpass added, pointing out that “the lack of high-quality data prevents governments from identifying efficient public health policies and responding to the needs of the patients”.
The Global Initiative is aiming for a survival rate of at least 60% for children with cancer globally, by 2030. This target represents an approximate doubling of the current survival rate and reaching it will save a million young lives over the next decade.
Meanwhile The Global Platform for Access to Childhood Cancer Medicines, launched by the World Health Organization (WHO) and St. Jude Children’s Research Hospital in the United States, seeks to counter an “unacceptable imbalance” in survival rates.
It offers an innovative approach in cancer care by addressing medicine availability in low and middle-income countries, which WHO said is often complicated by higher prices, interruptions in supply and out of pocket costs that result in financial hardship.
Giving hope to parents
The UN agency estimated that each year, 400 000 children worldwide develop cancer. The majority of those living in poorer countries are unable to consistently obtain or afford cancer medicines, resulting in 100 000 deaths annually.?
“Close to nine in 10 children with cancer live in low and middle-income countries. Survival in these countries is less than 30%, compared with 80% in high-income countries,” said Tedros Adhanom Ghebreyesus, the WHO Director-General.
“This new platform, which builds on the success of the Global Initiative for Childhood Cancer launched with St. Jude in 2018, will help redress this unacceptable imbalance and give hope to many thousands of parents faced with the devastating reality of a child with cancer.”?
St. Jude, located in Memphis, Tennessee, USA, is a global leader in the research and treatment of childhood cancer and other life-threatening paediatric diseases.
Treatments developed there have helped push childhood cancer survival rates in the US from 20% 1962, when the hospital was founded, to 80%.
Expanding the promise
St. Jude is making a six-year, US$200 million investment to launch the platform, which will provide medicines at no cost to countries participating in the pilot phase starting next year.
The funding represents the largest financial commitment for a global effort in childhood cancer medicines ever.
“St. Jude was founded on the mission to advance research and treatment of childhood cancer and other catastrophic paediatric diseases. Nearly 60 years later, we stand with the World Health Organization, partner organizations and our Global Alliance collaborators to expand that promise for children worldwide," said Dr James R. Downing, President and CEO of the research hospital.
“With this platform, we are building the infrastructure to ensure that children everywhere have access to safe cancer medicines.”
Pilot phase begins
The platform aims to provide safe and effective medicines to some 120,000 children between 2022 to 2027, with the goal of scaling up beyond that timeframe.
Countries will receive assistance in selecting medicines, developing treatment standards, and building information systems to track how care is being provided.
Discussions are underway with governments to determine the 12 countries for the initial two-year pilot phase.
It is expected that by the end of 2027, 50 countries will receive medicines through the platform. Source: news.un.org