Closing the pediatric cancer survival gap: A conversation with World Child Cancer

Every day, more than 1,000 children are diagnosed with cancer. In high-income countries where access to optimal care is available, the chances of survival exceed 80%. Unfortunately, likelihood of survival is only 15–45% for the vast majority of children with cancer who live in low- and middle-income countries. There is a complex interplay of factors contributing to this profound global inequality, rooted in weak health systems that are unable to meet the needs of children and their families and the low political prioritization of childhood cancer.

Through our 14 years of experience of working alongside global, regional and national partners, World Child Cancer has devised and refined our approach. Our aim is aligned with the WHO Global Initiative for Childhood Cancer CureAll Initiative, which strives to achieve a minimum global survival rate of at least 60% for childhood cancer by 2030. Our strategy is built upon four pillars that we believe are essential to the part we can play in achieving this goal:

1. To ensure the accessibility of high-quality treatment and care for children with cancer.
2. To extend psychosocial support for families of children with cancer, recognizing that successful treatment starts and ends with the whole family.
3. To work with communities, health workers and partners to facilitate early detection of childhood cancer to provide better outcomes.
4. To engage in advocacy efforts to influence local health ministries and hospital administrations to focus more resources on childhood cancer, as we believe that this is the most sustainable way for meaningful change.
   

The start of our work goes back to 2007, when World Child Cancer was set up under the leadership of Geoff Thaxter, who lost his daughter, Lisa, to cancer when she was 12 years old. There are no words to describe this kind of loss. But from his grief came a new determination, and Geoff knew he would do everything he could to help others in the same situation.

It wasn’t until he visited a Bangladeshi children’s cancer unit with his wife, Gill, though that he saw just how wide the gap in care and outcomes can be between low- and high-income countries. When he returned home to the UK, his ambition was clear: to make sure every child with cancer has access to the best possible treatment and care.

He enlisted the help of Professor Tim Eden OBE, a now-retired Pediatric and Adolescent Oncologist and Hematologist at the Royal Hospital for Sick Children, Edinburgh; Dr Raul Ribeiro, a Pediatric Hematologist-Oncologist in Memphis, Tennessee; Gordon Morrison, whose charity work has spanned 20 years, with a particular focus on childhood cancer, including the development of World Child Cancer with a team of like-minded parents from around the world. Together, they set about bringing Geoff’s vision to life.

World Child Cancer registered as a UK charity on May 17^th, 2007. A year later, Geoff also lost his life to cancer. It was a devastating blow, but his legacy lives on. We stand united behind his vision and are committed to improving access to diagnosis, treatment and care globally.

Since 2018, our collaboration has contributed to improved childhood cancer survival by increasing the quality of pediatric oncology services and enabling vulnerable children to have equitable access to treatment.

Joint efforts of different stakeholders involved in the cause contributed to developing the Pediatric Oncology Centre in Accra into a regional Centre of Excellence for Sub-Saharan Africa. Thanks to this development many more countries in the region have improved the diagnosis and treatment of childhood cancer.

Among other World Child Cancer activities, we have worked with partners to support upskilling over 4,000 healthcare workers through training developed and delivered in Ghana and across Sub-Saharan Africa. The training includes West Africa’s first Pediatric Oncology Fellowship at the Ghana College of Physicians and Surgeons, which is enabling clinicians across Sub-Saharan Africa to train and qualify as pediatric oncologists.

Two clinicians from Ghana have graduated, and a further 16 from Ghana, Nigeria, Liberia, Cameroon, and Sierra Leone are enrolled and progressing through the course.

29 nurses graduated from Ghana's first Associate Pediatric Oncology Nursing Program at the Ghana College of Nurses and Midwives. We have also supported the development of the first ever Pediatric Oncology Pharmacy curriculum with three fellows in training at the Ghana College of Pharmacists, who are currently gaining additional experience with our partners at the Tata Memeorial Centre in Mumbai, India.

What is most impressive is that the data shows that these activities have made a significant difference: One-year overall survival rates for children being treated in Accra has increased to 71% in 2021, from 49% in 2018 and access to diagnosis has risen with the figure of newly diagnosed children at 408 in 2021 from 345 in 2019.

Since the start of our work in Ghana, World Child Cancer has combined forces with local stakeholders to build public and political awareness around the disparity in childhood cancer care; create links to share skills and expertise in and across borders; support evidence-based research and practice development; advocated for the cause and influenced national policies.

One of the major causes of childhood cancer treatment abandonment is the high costs of diagnostic procedures and cancer treatment which are prohibitive for many families, and a burden for all.

Along with other stakeholders, World Child Cancer has lobbied for these costs to be met by government.

In November 2021, four common childhood cancers (Acute Lymphoblastic Leukemia, Burkitt Lymphoma, Retinoblastoma, and Wilms Tumor) were added to the National Health Insurance Scheme (NHIS) benefit. This was a landmark deal, which marked the first step towards the government recognizing that childhood cancer is a national priority that needs the political commitment and action that it deserves.

However, discussions in Ghana are still ongoing to ensure that the enrolment of childhood cancer onto the national health insurance is made effective through prompt access to cancer medicines, and that in the future, all types of childhood cancer is covered. There are still too many parents and caregivers who continue to pay for the cost of diagnosis and treatment.

Furthermore, unfortunately, in the past years Ghana’s annual inflation rate has increased from around 10% in 2021 to 45% in 2023. The NHIS coverage announcement is still not enough to cover the prohibitive out-of-pocket costs of treatment and diagnostics for many families.

There is still much more to be done to improve access to effective treatment.

Over the upcoming five years, the ongoing efforts of World Child Cancer with the support of the UBS Optimus Foundation will remain crucial to the sustained growth of Pediatric Oncology in Ghana, fostering its long-term viability.

Whilst survival rates for children being treated have improved, we know that there are still too many children in Ghana, and the region, who are never diagnosed, and die without any treatment. Our work on increasing awareness of childhood cancer, and education of communities and health workers about the signs and symptoms must continue as a priority, promoting early referral, through effective referral pathways. We are collaborating with partners in the region and internationally in understanding more about the most effective ways of doing this, and providing resources for research in the field.

Alongside increased awareness and referrals, we are working with our local partners to improve the tools they have to make accurate diagnosis, increasing capacity in pathology, and radiology. We recognize the need for increased participation in clinical research, one of the important aspects of all the educational programs we support, as well as facilitating the participation of our local partners in national and international conferences and research networks.

Access to effective treatment means access to essential cancer medicines, and this is another significant gap we are working with key partners and stakeholders to address.

We aim to ensure that families of children with cancer can receive adequate psychosocial support, contributing to reduce the likelihood of treatment abandonment or refusal. We are very aware of the impact of diagnosis on the whole family, and need to continue to increase financial support, along with emotional, practical, and educational support.

Our commitment also includes advocacy efforts to drive the development of pertinent national strategies. For instance, in recent months, thanks to our collaboration with the International Children for Palliative Care Network (ICPCN), a comprehensive needs assessment and situational analysis of children’s palliative care services has been conducted. With the right funding, from next year we aspire to incorporate pediatric palliative care into our initiatives in Ghana, further enhancing our impact locally and in the region.

Philanthropy has the power to drive long-lasting social change. When an organization such as World Child Cancer receives such support, it initiates a chain that touches numerous lives, potentially for generations. When people come together to help others, we are reminded of what it means to be human. And from there, communities grow stronger. Philanthropy can be viewed as a fundamental pillar of a stable society.

The Global Philanthropist Community and Collectives you’ve built at UBS truly showcase the power of collective philanthropy. Through our partnership with the UBS Optimus Foundation, philanthropists can donate strategically, making grants with a focus on effecting more impactful outcomes over a longer period.

Since the work of World Child Cancer started, we have witnessed significant and noteworthy milestones in the field of Pediatric Oncology, not only in Ghana but also within the broader African context and the countries where our work extends. Some of these achievements would not have been attainable without the invaluable collaboration and support we have received from the UBS Optimus Foundation.

Numerous substantial opportunities exist to continue to advance childhood cancer care and to progress toward sustainability. However, realizing these prospects requires collective efforts to expedite progress. Philanthropists that combine forces with UBS Optimus Foundation and World Child Cancer become part of a team dedicated to creating positive change and impact in the lives of children and their families.

Where in the world a child is born is the single biggest factor in their chance of surviving cancer, and going on to lead a healthy, happy life. Most childhood cancers are curable. We know this because survival rates in high income countries like the UK, USA and Europe are now over 80%. Yet more than 80% of the world’s children live in low and middle-income countries, where survival is so much lower.

With the support of incredible partners like the UBS Optimus Foundation, World Child Cancer can work towards the realization of our vision of a world where every child with cancer has equal access to the treatment and care they need and make our contribution to the WHO global aim of 60% survival by 2030.

To learn more about how you can help close the pediatric cancer survival gap and support the great imperative of World Child Cancer, visit the UBS Optimus Foundation or get in touch with your client advisor today.