Authors: Majed Mohammed, Yuvreet Kaur, Dorra Al-Saadoon, Haneen Khalil Hanjeer, Ezra Anecho
Topics: Epidemiology of Paediatric Cancer, Examples of Healthcare Structures in High-income Countries, National and International Disparities in Care, Global Cases of Barriers to Cancer Care, What Can We Do?, Economic Impact of Paediatric Cancer Care, Implications for Practice, Call to Action
Globally, cancer imposes a major disease burden. Worldwide, approximately 160,000 new cancer cases and 90,000 cancer-related deaths occur every year in children under the age of 15.1 Different economic forces and health system factors can strongly influence global disparities in paediatric cancer outcomes.2
The development of countries can be evaluated according to their economies. For the 2022 fiscal year, low-income economies have been defined by The World Bank as those with a Gross National Income (GNI) per capita of $1,045 or less in 2020, low and –middle-income countries (LMICs) are those with a GNI per capita between $,1046 and $4,095, upper-middle-income economies are those with GNI per capita between $4,096 and $12,695; high-income economies are those with a GNI per capita of $12,696 or more. Most countries with low and middle income are in Africa, Asia, Eastern Europe, and Central and South America.2 Although the incidence of paediatric cancer is lower in low and-middle-income countries, more than 90 per cent of children live in LMICs, making paediatric cancer cases about five times more prevalent within LMICs. More than 85 per cent of paediatric cancer cases occur in LMICs that have access to less than 5 per cent of the world’s resources.3
The most common paediatric cancers are leukemia and lymphoma. Mortality rates for most paediatric cancers are close to 100 per cent in developing countries4, whereas more than 80 per cent of paediatric cancer patients in high-income countries (HICs) survive five years after diagnosis.5,6 Suboptimal access to care, late and missed diagnosis, treatment abandonment, inadequacy of therapy, higher rates of relapse, and financial burden contribute towards the overall poor outcomes for paediatric cancer patients in LMICs.3
Canada has a decentralized, universal, publicly funded healthcare system.7 Each province and territory have their own insurance plan and receive financial assistance from the federal government on a per-capita basis if it complies with the five pillars of the Canada Health Act: 1. Publicly administered; 2. Comprehensive in coverage conditions; 3. Universal; 4. Portable across provinces; and 5. Accessible. Approximately 70 per cent of health expenditures are financed through general tax revenues. Supplementary health services are largely financed privately, and individuals can be covered under an employment-based group insurance plan or buy private insurance. Despite a universal healthcare system, socioeconomic inequalities in health persist, particularly in health outcomes between Indigenous peoples and the rest of Canadians.8
A recent study by The Commonwealth Fund compared the performance of health care systems of 11 HICs , with the top-performing countries being Norway, the Netherlands and Australia.9 The United States ranked last overall. The study found four features that distinguished top-performing countries: universal coverage and removing cost barriers; investing in primary care systems to ensure that high-value services are equitably available in all communities to all people; reducing administrative burdens that divert time, efforts and spending from health improvement efforts; and investing in social services especially for children and working-age adults9.
In England and Wales, care of children with cancer is offered and coordinated at 17 centers registered by the United Kingdom Children’s Cancer Study Group (UKCCSG).10 Some children’s centers have dedicated adolescent beds and units for youth with cancer. Shared care centers are based in secondary care facilities and are affiliated with UKCCSG centers. The provision of services at shared care centers varies from initial diagnosis only, to greater involvement in the delivery of care for children and young people with cancer.10
Most centers offer a range of allied health services such as specialist pharmacy, physiotherapy, occupational therapy, and pain management, although access to these services may be limited. Centers refer patients out of the region for specialized services such as bone or sarcoma surgery, retinoblastoma assessment, and liver and thyroid services.
Disparities in healthcare resources, access, and funding are not only apparent at an international level, but also at a national level. For instance, although cancer-associated mortality has been decreasing throughout the United States, it is not equally distributed. Young patients in rural areas experience limited access to medical and oncology providers, long travel times, and low recruitment to clinical trials, all of which affect quality of care and health outcomes. Rural counties also have high rates of cancer-related mortality and other negative treatment outcomes. Although rural-nonrural disparities in cancer care are widening, research funding on this topic is limited, resulting in a slower emergence of strategies addressing the care gap. This highlights the need for actions that increase access to cancer treatment in rural areas, and for research on both the problem and the solutions.23
In 2019, the University of California San Francisco conducted a study aimed to explain the delays and barriers of cancer healthcare in LMICs.11 The systematic review showed that low health literacy was reported most frequently in many studies describing barriers to cancer diagnosis and was found to be highly associated with lower education level, no formal employment, low income, and rural residency.11
Transportation barriers are one of many examples of barriers to healthcare access. They can lead to rescheduled or missed appointments, delayed care, and missed or delayed medication use and can ultimately result in subpar management of illness and poorer health outcomes. Pediatric cancer care is only available at the tertiary level in India, and this results in delays in presentation and treatment. For example, 80per cent of children with neuroblastoma and 40-60 per cent of children with Hodgkin lymphoma presented in advanced stages.12 A study of paediatric retinoblastoma in India observed a higher abandonment rate in children from rural backgrounds, due to longer distances traveled or more frequent use of alternative therapy in those from a rural background.13
Zambia is an LMIC with a population of 14.5 million, and half are below 15 years of age. Around 60 per cent of the Zambian population is below the international poverty line of $1.25 per day. A qualitative study conducted at the paediatric oncology ward at a hospital in Zambia aimed to explore the challenges related to paediatric cancer diagnosis and management. It showed that major issues were related to inadequate specialized health workers, poor communication among healthcare staff, limited space and number of beds as well as insufficient medical equipment and supplies such as blood supply.14
In September 2018, World Health Organization (WHO) launched the Global Initiative for Childhood Cancer (GICC) with the goal of reaching a minimum of a 60 per cent survival rate for youth with cancer by 2030, while reducing suffering.15 The ‘CureAll’ framework was developed to support this initiative, and it included helping governments and other stakeholders assess current capacity, set priorities, generate investment cases, develop evidence-based standards of care and monitor progress. More recently, in December 2021, WHO and St Jude Children’s Research Hospital launched the Global Platform for Access to Childhood Cancer Medicines – an initiative aimed to procure and provide medications for children with cancer. 15
The development of supply chains and procurement systems is critical in helping to eliminate barriers and improving access to essential medicines. The successes documented by the Uganda Cancer Institute highlight the impact that interventions addressing procurement systems and supply chains can have in overcoming the complexities faced by countries in the modern pharmaceutical supply chain. 16 If these successes by the Uganda Cancer Institute are emulated, especially through pooled procurement, the barriers such as affordability will be minimized. Notably, the availability of essential cancer medicines by the Institute was improved from 28.5 per cent to 85.8 per cent superseding the WHO’s 80 per cent target. This was done through redefining cancer medicines as highly specialized drugs (HSDs), streamlining the procurement and supply chain, collaboration with stakeholders, legalizing the procurement of anticancer medicines as HSDs, and access initiatives. This approach resulted in cost savings of more than USD $2.3 million, which was used to increase the volumes of medicines and medical supplies four-fold in four years. 16 This approach not only increased volume but equally improved access to high-quality medicines through improved negotiations and buying directly from manufacturers such as Roche (German), Mylan (France), Novartis/Sandos (German), Hetero Labs (India), and Medac (German). Other notable initiatives include the Gleevec International Patient Assistance Programme, Direct Relief International, Novartis Access Initiative, and access initiatives supported by the Clinton Health Access Initiative.
Twinning programs ally LMICs hospitals with HICs specialized cancer treatment centers and are an excellent method to improve outcomes of survival from paediatric cancers. 17 Twinning is beneficial as a two-way transfer of skills and has benefits for both hospitals in the HICs and LMICs. It also allows locally appropriate treatment protocols to be developed and implemented. Guidance is offered to the local support groups and it creates long-lasting partnerships and knowledge of other healthcare systems. 17, 18
One project which encompasses all the aspects of the twinning model is run by World Child Cancer, which acts as the facilitator and project manager between hospitals in LMICs and HICs. 19 They ensure that funding is secured for projects so that the professionals can direct their time and skill without the administrative burden. Many of the world’s leading cancer units and paediatric oncology doctors work on the projects as volunteers. Since 2007 the charity has created nine twinning partnerships in Ghana, Malawi, Mozambique, Cameroon, Mexico, Colombia, Pacific Islands, The Philippines, and Bangladesh. The charity has recruited hospitals from the UK, The Netherlands, USA, Canada, Singapore, and South Africa to act as partners to the units in resource-limited countries. 19
Another example of twinning is a partnership between the paediatric hematology/oncology departments at University College Hospital London and Bangabandhu Sheikh Mujib Medical University in Dhaka, which was set up in 2012 aiming to assist in training and retention of staff. 17 World Child Cancer went on to receive a second grant from the UK government to expand this partnership to include seven paediatric cancer units in Bangladesh to improve treatment, care, and quality of life for children with cancer.
Pediatric cancer consistently remains underfunded, with many research grants relying solely on philanthropic generosity rather than federal grants or providing access to care for paediatric cancer patients. This paper’s findings demonstrate the need to create an effective international funding system or model for sustained improvement in paediatric cancer care in LMICs, to improve survival rates among children with cancer. An international funding system can involve the flow of financial resources, although the presence of committed individuals on both sides predicts success better than the availability of funding to support LMICs governments to develop high-quality cancer centers and regional satellites to ensure early and accurate diagnosis and effective treatment for paediatric cancers.
Financial costs associated with cancer care for families can be overwhelming, especially in countries with no universal healthcare. This has resulted in the flourishing of organizations and foundations that provide charitable donations and loans to families. Although global investment to support access to paediatric cancer care is an important first step, it is not the ultimate solution. Strengthening the healthcare systems through precise prioritization of key public health strategies is required for improved sustainability, and research methods must be applied to improve healthcare interventions. In addition, critical initiatives should include mapping the coverage and gaps in health insurance and analyzing the range of demand and supply modalities to bridge any financing gaps and consolidate equity of access to childhood health care in LMICs.
This review draws attention to the current status of the healthcare system as well as cancer prevalence and health outcomes in the paediatric population in LMICs. The findings highlight the significant delays that occur throughout the cancer care continuum in LMICs and describe common barriers that cause them. This review will help shape a research agenda in LMICs by studying the current metrics to design effective implementation strategies. This can include using lower intensity treatment regimens, expanding the resource pool to obtain funds, and globally appealing to justice, equity, and the societal value of children’s lives in LMICs.
There is an urgent need for policymakers, responsible bodies, and governments to form partnerships and collaborations through which they will be able to attract multinationals and negotiate directly with pharmaceuticals, eliminating alterations to prices by distributors, wholesalers, and retailers. This pooled approach to procurement will also increase transparency by improving access to critical information like prices and suppliers.
Moreover, the availability and quality of cancer registries in various countries are highly related to their development level, as most LMICs critical information on the burden of cancer is absent. There is a need for population-based paediatric cancer registries in LMICs to have further objective data on statistics such as prevalence, survival, morbidity and mortality. These cancer registries can provide important data for resource allocation, advocating for increased funding, and targeting research goals.
There is an urgent need for governments and policymakers to improve the healthcare system by increasing government funding for paediatric cancer care and forming partnerships with key stakeholders. Increased research funding on healthcare models in LMICs is needed to study effective ways of streamlining care for paediatric cancer patients. We also call for HICs to initiate collaborations with LMICs to work together on improving cancer care for this patient population.
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