Building equality into the health systems treating childhood cancer

Gulkumar is not the type to spend money; she did not even have a party for her own wedding. But she did pay out of pocket for treatment when her daughter was diagnosed with cancer. For that, she did not even consider the cost. She allowed herself to be supported by her sister and her nephew, knowing that the costs were too high for her to carry alone. She left her job for a year. The extended family sent money for care - including purchasing the cancer medicines needed for treatment - and for the indirect costs of a cancer treatment, like transport. Because the rest of the family lived so far from the treating centre, they had to make weekly, then monthly trips to the capital by plane.

The experience of Gulkumar Ergeshbaeva and her family is all too common.

Each year, an estimated 400 000 children develop cancer, starting a life changing journey for themselves and their families. Yet inequalities result in not just different health outcomes but also different financial burdens.

"Inequality can be a key factor in whether a child recovers from cancer. What their families earn, whether they are a girl or a boy, what age they are, which town they are born in, can contribute to survival rates within countries as well as between them - that must change."

Bente Mikkelsen, Director Noncommunicable Diseases, Rehabilitation and Disability

^{Pharmacy in Kyrgyzstan. Credits WHO/ Kyrgyzstan}

Only 29% of low income countries report that cancer medicines are generally available to their populations compared to 96% of high income countries, leaving countless families exposed to the inexcusable reality of having to purchase medicines from private pharmacies or hospitals.

The costs of cancer do not stop there. When governments do not cover essential cancer services, families are subjected to multiple costs: expenses on cancer services such as direct costs, expenses to facilitate access to care such as transportation and housing such as indirect costs and broader expenses linked to chronic illnesses such as caregivers not being able to work. These compounding costs can be substantive and prolonged, eating into family's savings and assets.

As a way to tackle these issues WHO has the WHO Global NCD Platform (GNP), which aims to keep NCDs, including cancer, high on political, health and development agendas. This does this by taking on the role of facilitator, convener and an accelerator of action at international, regional and country levels to assist in the implementation of the Sustainable Development Goals.

In Kyrgyzstan, where Gulkumar and her family live, costs can add up. The government does cover the costs of cancer medicines, but due to stockouts, families may be required to purchase from private pharmacies at higher prices and, potentially, less certainty on quality.

The WHO Global Initiative for Childhood Cancer (GICC) was launched in 2018 with the objective to improve access and increase survival. GICC has a goal to achieve at least 60% survival for all children with cancer by 2030. This type of investment in health would save an additional 1 million lives over the next decade: the initiative has already advanced in over 70 countries, including Kyrgzystan, which became a GICC focus country on October 2023.

High income countries have shown that where comprehensive services are generally and quickly accessible, more than 80% of children with cancer are cured and financial hardship can be mitigated. Yet, there are worse outcomes in low- and middle-income countries. A childhood inequalities report, which included Kyrgyzstan, shows that inequalities contribute to and are driving outcomes. Inequalities can be found in each stage of the cancer pathway from underdiagnosis and underreporting to long term effects of treatment on education and employment.

Countries participating in GICC are showing that small investments can catalyze policy changes including cancer as part of universal health coverage. By investing in health systems, by setting priorities and providing care for all, governments and communities can improve access and reduce financial hardship.

Elsewhere in Kyrgyzstan, Gulzat Zhapanova and her family had to buy a new car after the public transportations services could not accommodate the disabilities of her daughter after her cancer diagnosis. That was just the beginning of the broader impact of a cancer diagnosis

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