The global fight against childhood cancer is marked by both significant progress and stark disparities, a reality underscored by observance of International Childhood Cancer Day. While survival rates are increasing access to effective treatment remains uneven and families often face substantial financial burdens as a result of a child’s diagnosis.
Recent data reveals that over 80% of children with cancer in high-income countries now survive, a testament to advancements in treatment and care. However, outcomes are considerably lower in low- and middle-income countries, where the burden of the disease is often higher. This disparity highlights a critical gap in global health equity.
Progress in Survival, Persistent Challenges
Despite these challenges, there is reason for optimism. According to a recent report by the Italian Federation of Associations of Volunteers in Oncology (FAVO), in collaboration with the Italian Association of Pediatric Hematology Oncology (AIEOP) and other organizations, the overall survival rate for pediatric cancers now exceeds 80%, excluding highly lethal neoplasms like high-grade gliomas and refractory sarcomas. More than 50,000 individuals in Italy benefit from the country’s “right to be forgotten” law, which protects cancer survivors from discrimination.
The incidence of childhood cancer is also being closely monitored. Data from the U.S. SEER Registry, spanning nearly five decades (1975-2019), shows an increase in the incidence of childhood cancer from 14.23 cases per 100,000 children in the late 1970s to 18.89 per 100,000 in the 2010s. This rise is particularly noticeable in leukemias, lymphomas, brain tumors, hepatic tumors, and gonadal germ cell tumors. However, during the same period, age-adjusted cancer mortality decreased from 4.9 to 2.3 per 100,000, and 5- and 10-year survival rates rose significantly, from 63.1% to 85.2% and from 58.8% to 82.7%, respectively.
Significant improvements have been seen in the treatment of specific cancers. Five-year survival rates for leukemia, for example, have increased substantially, from 48.2% to 85.1% between 2010 and 2019. Lymphomas have also shown marked improvement, with survival increasing from 72.9% to 94.2% over the same period. However, survival rates for central nervous system tumors, bone tumors, and sarcomas remain suboptimal, at around 60%.
The Financial Toll on Families
Beyond the medical challenges, families facing a child’s cancer diagnosis often experience significant financial strain. FAVO estimates that indirect and non-healthcare costs associated with a 12-month treatment course can reach €34,972, potentially pushing families below the poverty line. These costs include transportation, accommodation, non-reimbursed medications, psychological support, tutoring, and lost income.
The report highlights the limitations of existing support systems, such as Law 104/92, which primarily benefits employed individuals and does not extend to unemployed or self-employed parents. This lack of comprehensive financial support exacerbates the burden on families already grappling with the emotional and practical challenges of a child’s illness.
Disparities in Access to Care
Geographic disparities in access to care are also a major concern. The report reveals significant differences in 5-year survival rates between regions within Italy, ranging up to ten percentage points. This is linked to the concentration of specialized care in a limited number of centers – 75% of patients are treated in just 10 facilities located in Rome, Florence, Milan, and Turin. A substantial proportion of patients, particularly those in southern regions like Molise (89.7%), Basilicata (64.7%), and Abruzzo (59.6%), are forced to migrate for treatment.
A childhood cancer diagnosis can act as a “multiplier of family fragility,” increasing vulnerability to financial hardship and emotional distress. The report emphasizes the need for improved integration between regional oncology networks, the AIEOP network, and the National Network of Rare Tumors to ensure equitable access to specialized care across the country.
Addressing the Needs of Adolescents and Young Adults
A particularly vulnerable population is adolescents and young adults (AYAs) with cancer. Approximately 25% of children aged 0-17 are hospitalized in adult wards, and 85% of these patients are managed by staff not specialized in pediatric oncology. AYAs often face poorer outcomes compared to younger children with similar conditions, and may fall into a “no man’s land” lacking access to appropriate oncological expertise. Their participation in clinical trials is also often limited.
The report advocates for extending access to pediatric care up to age 18 and ensuring that AYAs have continued access to pediatric oncology centers when appropriate. Collaboration between pediatric and adult oncology services is crucial to improve outcomes for this age group.
Supporting Families and Healthcare Workers
The report also addresses the psychosocial needs of both patients and their families. Hospitalized children often experience isolation, stigma, and disruption to their education and social lives. The importance of psychosocial rehabilitation and protecting the rights of children to education, play, and sport during all phases of illness is emphasized. Families also face the challenge of “Fear of Recurrence” (FoCR) after treatment, leading to hyper-vigilance and isolation.
Healthcare workers, too, are affected by the emotional toll of caring for children with cancer, experiencing burnout and contributing to a shortage of specialists. The report calls for increased support for healthcare professionals, including integration of humanities disciplines into their training to enhance emotional intelligence and promote reflection.
Investing in Research and Innovation
Finally, the report underscores the need for increased funding for pediatric oncology research, which is often underfunded due to the relatively small patient population and limited commercial incentives. A sustainable funding model is essential to drive innovation and improve treatment outcomes. A national research program dedicated to pediatric oncology, separate from adult cancer research, is proposed, along with the establishment of a permanent inter-ministerial table to oversee research efforts.
Organizations like Peter Pan, a volunteer organization in Rome, play a vital role in supporting families by providing free accommodation, transportation, and psychosocial support. They are expanding their services to meet the growing needs of patients and families traveling for treatment, including a planned 50% increase in transportation services in .
