Improving childhood cancer survival requires systemic change. Advocacy is key to making improvements in the overall patient journey that are sustainable and impactful over time.
Advocacy is key to making improvements in the overall patient journey that are sustainable and impactful over time. Photo: Gus Moretta
Childhood cancer is a global issue, yet its burden is disproportionately felt in low- and middle-income countries (LMICs). Approximately 429,000 children and adolescents develop cancer worldwide, of which the majority (almost 80%) live in LMICs. Limited resources, a lack of awareness, and inadequate healthcare infrastructure contribute to five-year survival rates as low as 30%, compared to high-income countries (HICs) where the proportion is as high as 80%.
International partnerships between hospitals in HICs and LMICs have significantly improved care and outcomes. However, addressing this health disparity requires more than immediate medical interventions.
We believe that advocacy at the community, hospital, and national (policy) level must be a fundamental part of the activities of international organisations working in the field of global childhood cancer to drive systemic change and make lasting impacts.
In 2018, the World Health Organization (WHO) launched the Global Initiative for Childhood Cancer, aiming to increase the survival rate of children with cancer globally to at least 60% by 2030. Central to the implementation of this initiative is the CureAll framework. Advocacy is recognised as one of the three fundamental enablers of this initiative and a key driver of success.
What is the role of advocacy?
Advocacy plays an important role in transforming paediatric oncology care, particularly in LMICs. It can accelerate policy making, strengthen capacity building, mobilise resources, and drive research efforts. At a practical level, advocacy can improve access to essential medicines, technology, and information, providing crucial support for patients and their families.
The Princess Máxima Center for Pediatric Oncology outreach program takes a holistic approach to improving every stage of the patient journey, in which advocacy is key. The patient journey starts when the first symptoms appear, and consequently includes access to care, symptom recognition by healthcare providers, appropriate referral to a paediatric oncology centre, adequate diagnosis, access to treatment, supportive care, follow-up, and social reintegration.
Improving childhood cancer survival requires systemic change, with advocacy as the driving force. Without it, efforts to improve the overall patient journey may fail when external funding stops. Advocacy at the national level can secure long-term commitments from hospitals, governments, and other institutions, ensuring that improvements are sustainable and impactful over time.
What is the role of international partners?
International partners in HICs have a responsibility to advocate for childhood cancer care in the countries where they work. The Princess Máxima Center for Pediatric Oncology outreach program is involved in advocacy at multiple levels and in different ways, always in close collaboration with local colleagues. At a community level, the program has initiated projects to raise awareness about childhood cancer, which encourages early diagnosis and treatment. Other efforts have focused on reducing stigma; for instance, by having childhood cancer survivors share their stories in a documentary.
The outreach program team is also working to co-establish a patient-parent association that could serve as a strong platform for ongoing advocacy. In terms of capacity building, the team has successfully lobbied for Kenya’s first nursing oncology training program. Additionally, the team's efforts have contributed to the graduation of the first cohort of Kenyan paediatric oncologists, who previously had to seek training abroad. As international partners, the team also strategically engage with representatives from the Dutch embassy in partner countries, using their influence to positively shape policy decisions.
Several international partners also focus on uniting stakeholders at national paediatric oncology stakeholder meetings in LMICs, bringing together national health insurance agencies, parents, survivors, the National Cancer Institute, the National Health Insurance Agency, healthcare staff, and scientists. This can lead to the formation of paediatric oncology working groups which can maintain close contact with organisations such as the National Cancer Institute and the National Cancer Control Program. For the first time, paediatric cancer was fully included in Kenya's five-year national cancer strategy plan, which was released in 2023.
By advocating at multiple levels, international partners can amplify their message and strengthen the impact and sustainability of their efforts.
Advocacy is not just an optional component in the fight against childhood cancer—it is essential in bridging the gap in childhood cancer survival rates. Photo: Aditya Romansa
What are the challenges of advocacy?
Although advocacy is crucial, it comes with challenges. An important consideration includes local ownership. Advocacy efforts by international partners should ensure that initiatives are culturally appropriate and local stakeholders are empowered, which also makes the outcomes more sustainable. Efforts require a high level of understanding of local contexts, healthcare systems, and culture. What works in one country may not work in another, and international partners must adapt their strategies accordingly.
At a policy level, there is also the challenge of political instability. An organisation might invest in building a strong relationship with a country's Minister of Health, only to see efforts disrupted if that person changes positions. Good stakeholder management and institutionalisation of advocacy efforts are key to ensuring that efforts are not wasted due to these changes.
Measuring the impact of advocacy strategies is also challenging. Their impact may take time and success can be hard to quantify. Defining clear goals, following up with key stakeholders, and regularly evaluating progress is essential.
Advocacy is not just an optional extra in the fight against childhood cancer—it is essential in bridging the gap in childhood cancer survival rates. International partners have a responsibility to support these efforts in culturally sensitive ways that empower local stakeholders. By investing in advocacy, we can improve the overall patient journey and contribute to the WHO goal of increasing the survival rate of children with cancer globally to at least 60% by 2030.
Together, we can create a future where every child, no matter where they live, has access to care and a chance to survive a cancer diagnosis.
The opinions expressed are those of the authors and do not necessarily reflect the position of Re:solve Global Health.
Laura van Tinteren is programme manager at the outreach department of the Princess Máxima Center for Pediatric Oncology, where she coordinates projects aimed at improving healthcare for children with cancer in LMICs. She holds an Erasmus Mundus master's degree in international humanitarian action and a bachelor's degree in European Public Health.
Noa Wijnen is currently pursuing her PhD at the Princess Máxima Center for Pediatric Oncology and Vrije Universiteit Amsterdam, where her research mainly focuses on paediatric acute myeloid leukaemia. She also works with the Center’s outreach program on a supportive care project in Kenya that aims to enhance nutritional care and infection prevention for paediatric oncology patients.
Dr Irene Nzamu is a paediatric haematologist oncologist and the head of the pediatric oncology unit at Kenyatta National Hospital, one of the large comprehensive treatment centres for childhood cancer in Kenya. She holds a Bachelors Degree in Medicine & Surgery from the University of Nairobi, a Masters in Paediatrics & Child Health from the University of Nairobi, a Fellowship in Paediatric Hematology & Oncology from Makerere University/Baylor College of Medicine and is a fellow of the African Leadership University. She is a partner of the Princess Máxima Center outreach program through a collaboration with Kenyatta National Hospital.
Larissa Klootwijk coordinates the awareness and early referral project in Kenya for team outreach at the Princess Máxima Center for Pediatric Oncology. She holds degrees in medicine from the University of Amsterdam and completed specialised training in Global Health and Tropical Medicine in 2022. Her extensive clinical practice includes projects and research in Sierra Leone, Kenya, and other regions.
Professor Gertjan Kaspers is the director of the fellowship program and the Department of Academy & Outreach in the Princess Máxima Center and a professor of paediatric oncology at Amsterdam UMC. He has trained 41 PhD students and co-authored more than 600 publications. He is chief investigator of the international protocol for the clinical trial CHIP-AML 2022 and he supervises several outreach projects that aim to improve outcomes for children with cancer in resource-limited countries.
Comments