Global Platform builds momentum for improving childhood cancer care

The Global Platform for Access to Childhood Cancer Medicines (Global Platform) is doing more than expanding treatment options, it is creating momentum that countries around the world can leverage to strengthen pediatric cancer care in other ways. As a partnership between participating countries, St. Jude and World Health Organization, the Global Platform was co-designed to expand access to quality-assured cancer medicines for children worldwide. Nepal, located in South Asia, and Ghana, located in West Africa, are both participating in the Global Platform, with Nepal being in the first wave of participating countries and Ghana in the second.

As both countries prepared to participate in the program, they developed new infrastructure to collect and manage national data on childhood cancer. Those systems are already producing benefits beyond medicine distribution, such as helping leaders better understand the burden of disease, plan national strategies and identify barriers to care.

“We had to improve our systems, including record keeping, storage, distribution and analysis,” explained Krishna Sharma, MD, B P Koirala Memorial Cancer Hospital senior consultant and board of directors member in Nepal. “We now have a national cancer registry and a series of systems that are not only for medicines, which will also help us provide better service for our patients.”

“With better data collection, we have a validated set of numbers to predict what we need,” said Lorna Renner, MD, of the University of Ghana Medical School. “That creates opportunities to work with partners and improve outcomes.”

Data builds momentum to cure more kids with cancer

Both Ghana and Nepal have now built national cancer registries, enabling more consistent reporting and clearer insight into the distribution and burden of pediatric cancers. Although the Global Platform was launched about a year ago, making it too soon to measure long-term survival outcomes, the new data infrastructure is already influencing national planning.

In Ghana, registry data has helped convey the scale of childhood cancer to policymakers. “We’ve used our data to improve the Ministry of Health’s awareness of the burden of childhood cancers,” Renner said. “When governments understand the magnitude of the problem, they also see the opportunity, as children treated successfully have decades of productive life ahead of them.”

That data spurred Ghana’s Ministry of Health to start implementing a national strategy for pediatric cancer. While a plan previously existed, it lacked momentum. The new data infrastructure now supports planning, forecasting medicine needs and coordinating efforts with domestic and international partners, including the Global Platform, to move these initiatives forward.

Data breaks down barriers to accelerate progress in pediatric cancer

Before participating in the Global Platform, both countries faced high rates of treatment abandonment and delayed diagnosis, partly due to limited availability of cancer medicines. Although medicine access has improved, the data revealed that other obstacles remain. In Nepal, the data confirmed a suspected reason: geography.

“The number of children coming to hospitals has improved, but not as much as we would like,” Sharma explained. “Distance remains an important barrier, as many of these children cannot travel the long distances needed to reach an existing care center. So, now we are opening new centers to get wider accessibility near their hometowns, using the data we’ve gathered to quantify how much medicine to distribute to each location.”

Nepal intends to build at least eight additional cancer care centers to serve these children. The logistics still need to be finalized, but the existing data has galvanized the nation to commit to the project. This includes introducing The Shared Care Network Model, which will help to further decentralize cancer therapy. Both existing and new hospitals will be systematically collecting and uploading data on diagnosis, therapy, cures and treatment abandonment to the SJCARES system, a suite of tools that supports evidence-based decision-making on pediatric cancer care in resource-limited countries, hiring dedicated data managers to facilitate that process.

The early results and current data have been enough to convince these nations of the need to create such physical infrastructure and other initiatives for children with cancer, which could also help other pediatric patients.

Building momentum beyond cancer

Although the Global Platform focuses on childhood cancer medicines, the systems created for the program represent an opportunity to strengthen care for many other pediatric diseases. “In the future,” Sharma said, “we will further extend our systems so that we can get better data, participate in collaborative research and empower us in more childhood diseases than just pediatric cancer.”

In Ghana, researchers are already exploring how the same infrastructure could help address sickle cell disease, which has a disproportionate impact on the country. Despite how common the disorder is, scientists have struggled to quantify its impact, complicating efforts to treat the disease. “For other noncommunicable diseases in childhood, such as sickle cell disease, there’s also a huge but unknown burden in Ghana,” Renner said. “This data system will help us understand that burden and improve care for those children as well.”

By developing the data infrastructure needed to be a collaborator for the Global Platform, clinicians and health leaders in Ghana and Nepal have created new opportunities to strengthen their national health systems. The information they collect is helping guide policy decisions, support investment in care infrastructure and improve planning for medicines and services.

“The Global Platform is a real life-changer,” Renner said. “It’s strengthening various aspects of childhood cancer services and has the potential to improve the survival and outcomes for these children, as well as strengthen our health sectors and outcomes for all childhood diseases.”