Ensuring Equitable Cancer Care for All Children
Summary
In 2024, Duke University and St. Jude Children’s Research Hospital committed to create a comprehensive, scalable program to address inequitable access to cancer care for 5,000 children across 10 low- and middle-income countries in Africa, Asia, Latin America, and the Middle East by 2031 by focusing on two synergistic, patient-centered interventions. Duke University’s proven patient navigator program will assist families with navigating the health system to access care in countries supported by St. Jude’s Global Platform for Access to Childhood Cancer Medicines program. Simultaneously, families will be enrolled in Duke University’s cash transfer program and receive $1,000 to offset the expenses associated with accessing cancer care, like transportation and missed work of caregivers. Duke and St. Jude will also leverage a unique local sustainability model by including in-country foundation partners in the design and implementation process.
Approach
Duke University and St. Jude commit to creating a comprehensive, scalable program to address inequitable access to cancer care for 5,000 children across ten LMICs by focusing on two synergistic, patient-centered interventions: a (1) systems-oriented patient navigator program and (2) family-oriented cash transfer program (CTP) . Both interventions are evidence-based, multi-level interventions with pilot data demonstrating effectiveness and build off St. Jude’s GICC and GPACCM programs.
By 2031, Duke and St. Jude will match 5,000 children receiving cancer care in countries with access to GPACCM products to a patient navigator. These navigators will be trained to assist families with navigating the health system, including scheduling appointments, completing paperwork, going to appointments, and addressing any barriers to care such as transportation or referrals. In addition, they will maintain regular contact with families to promote treatment adherence and reduce abandonment. Simultaneously, families will be enrolled in the CTP intervention where each family will receive on average $1,000 to be used at their discretion. These funds will support financial constraints associated with seeking care, including transportation and the ability of parents to work as they accompany their child for treatment. Duke University and St. Jude will track cancer care patterns, clinical outcomes, and financial hardship and compare program effectiveness across settings.
To ensure sustainability and scalability, Duke University and St. Jude will leverage the St. Jude Global Alliance civil society foundation members in each country. As childhood cancer services are typically based on a fee-for-service model, foundations provide essential medical services and psychosocial services (housing, social work) free of charge for all children diagnosed with cancer in their respective countries. Through this Commitment, St. Jude Global Alliance teams will support foundations through resource mobilization training and budget impact planning to ensure health navigation and cash transfer programs are locally sustainable long-term.
Action Plan
EACH YEAR: The team of in-country staff and Principal Investigators will meet monthly to discuss program activities and any identified challenges. The entire team will meet yearly to discuss the program’s progress, exchange best practices, and identify next-step opportunities.
YEAR 1:
Q1, the team will obtain all necessary IRB approvals and begin personnel recruitment.
Q2-Q3, Data collection tools will be finalized
Q4, the leadership team will travel to sites to set up the project and train program personnel. Deliverables include data collection tools, SOPs for data storage, and number of personnel recruited and trained.
YEAR 2-3:
Q1, the team will begin enrollment and the provision of navigation and cash transfer services at Site 1 to pilot and refine data collection plans.
Q2-4, enrollment will take place at 6 GPACCM countries in 1-month intervals to ensure implementation occurs in a structured manner. Enrollment will then be scaled-up to four additional countries through years two and three. Deliverables include number of participants enrolled, project implementation steps, and refinements made at each site.
YEAR 4:
Q1, enrollment of all 5,000 families will commence.
Q2-3, data analysis will take place
Q4, preliminary findings will be presented to the full program team in monthly and quarterly meetings outlined above. Deliverables include the number of participants enrolled, project implementation steps and refinements made at each site, manuscripts to submit to high-impact journals, and preliminary NIH grant aims.
YEAR 5:
Q1, the planned activities will provide preliminary data for future expansion to other countries and settings.
Q2-Q4, manuscripts will be finalized and final reports will be submitted to journals and stakeholders in each country and partner organizations. Deliverables include high-impact submitted manuscripts, sustainability plans, and final reports.
Background
Annually, an estimated 400,000 children develop cancer around the world. Of these, 90% reside in low- and middle-income countries (LMICs) where 1 in 5 are expected to survive (Atun, et al. 2020) . This stands in contrast to the >85% 5-year survival observed among children with cancer in high-income countries (HICs) . Representing one of the largest disparities in global health, the challenges are large, multifactorial and historically intractable.
The delivery of comprehensive childhood cancer care is a complex health intervention requiring early recognition and referral of a disease, accurate and timely diagnosis, adequate local expertise and manpower, reliable access to quality medications and systems to support a culture of quality improvement. Over the past 6-years, several commitments by St. Jude have spurred global action and ignited new hope for many families worldwide. In 2018, St. Jude partnered with the World Health Organization to launch the Global Initiative for Childhood Cancer (GICC) with the goal of improving global childhood cancer survival to 60% by 2030. In 2022, St. Jude and the World Health Organization, again working together, announced a new Global Platform for Access to Childhood Cancer Medicines (GPACCM) , a $200 million 5-year commitment to provide access to high-quality cancer medicines in 50 LMICs.
Yet despite progress at the policy and health delivery levels, interventions to address financial hardship have received scant attention. Too many families still lack means to navigate the complex health referral systems, and if they are successful, are forced to abandon care due to financial related toxicities and competing priorities. Moreover, existing cancer support programs offer a fragmented approach to cancer care, leaving many families unable to get over “last mile” hurdles to care provision. Improving survival for children with cancer requires a novel dual approach: A systems-oriented and a family-oriented patient-centered intervention that is locally sustainable.
Progress Update
Partnership Opportunities
Duke University and St. Jude welcome support in raising the financial resources needed to support this project in 10 countries, including the funds for hiring key personnel (project managers, coordinators, data managers, etc.) , capacity-building (training, infrastructure, mentorship, etc.) , and support for the cash transfer program. In addition, Duke and St. Jude welcome both media support to engage with potential financial partners, and policy dialogue partners to translate and disseminate findings into practice., The Commitment team includes experts in clinical care, health economics and financing, implementation science, epidemiology, data science, and poverty studies from both Duke University and St. Jude. As part of the Commitment, multiple departments and academic centers at both institutions will collaboratively work to implement the project with global partners in 10 LMICs. In-country stakeholders will include hospitals, academic institutions and civil society foundation partners with pre-existing memoranda of understanding through the St. Jude Global Alliance. Together, Duke and St. Jude’s highly collaborative team will facilitate clinical and research capacity building through program implementation and training new leaders in medicine, nursing, health economics, implementation science, resource mobilization, and policy.