Report shows gaps in child cancer care

There is a pressing need for a strategic cancer plan that makes proper provisions for children.

This is according to the 26th edition of the South African Health Review, dedicated to the challenges, successes, and gaps in cancer care within the South African healthcare system.

The report was released this week, as the country marked childhood cancer awareness last month.

Researchers conducted a health systems analysis to identify barriers and facilitators in access to childhood cancer treatment and medicines including interviews with professional stakeholders in the pharmaceutical value chain.

They included policy makers and regulators, medical insurance scheme informants, medicine companies and suppliers, healthcare providers, and civil society stakeholders.

In South Africa, approximately 1 000 children under the age of 19 receive a cancer diagnosis every year.

In 2023, Tygerberg Hospital’s Paediatric Oncology Unit saw more than 1 000 inpatients and 2 307 outpatients.

The researchers, however, note that this figure is believed to be an undercount.

According to the report, survival rates are a major concern at just 50% in South Africa compared to those in some high-income countries (reported to be as high as 80-90%6).

The 2017-2022 National Cancer Strategic Framework (NCSF) was intended to guide health legislation and policy-making for cancers at all levels of the health system, through outlining key interventions and establishing a single platform to coordinate the different activities and stakeholders. But according to the study, although the NCSF identified childhood cancer as a national priority, policy analyses showed that policy directives for childhood cancers were often vague, hindering progress and resource allocation.

A number of barriers were also found to directly impact access to childhood cancer treatment and medicines.

“Several professional stakeholders indicated that no concrete political priority is given to childhood cancer, resulting in a lack of targeted strategies for childhood cancers. This is most likely due to the small number of children affected compared to adults.”

Childhood cancer medicines are primarily listed on the National Essential Medicines List (NEML) and therefore financed through the National Tertiary Services Grant (NTSG) but no specific part of the budget is allocated to childhood cancers.

“Healthcare professionals indicated that they were unable to access the NTSG budget when attempting to acquire medicines for childhood cancer treatment because the budget had been exhausted elsewhere. Considering that childhood cancer medicines are confined to the NTSG, children are particularly affected by the lack of transparency of NTSG spending and potentially inequitable allocation.”

The findings show that the essential medicines list was still adult-dominated, and limited attention has been paid to paediatric indications since inception of the list.

A previous system of temporary care grants had also been abolished.

“If medicines are not included on the NEML, access to them can only be attained after approval from an institutional or provincial pharmaceutics and therapeutics committee (PTC), usually paid for from the NTSG.

The PTC appraises a request based on the justifications provided by the healthcare provider and the evidence presented. This process is associated with numerous obstacles, in addition to the issues associated with accessing the NTSG budget. Specifically, stakeholders expressed concerns because the PTC members often have no expertise in childhood cancers. It was felt that medicines for childhood cancers were not getting approved because the committee members did not understand the urgent need for these medicines.”

Additionally, high evidence requirements, similar to those for the NEML, preclude these medicines from approval.

Finally, it was found that there was no transparency and consistency in the decision-making of the PTCs, and the process can be delayed for up to four weeks.

The study further found that it was difficult to have paediatric oncology medicines added to the NEML due to the strict criteria and evidence requirements applied by the selection committee.

“It is widely known that clinical evidence in children is often missing or weak, which is even more pronounced for rare diseases. In many cases, expert opinion constitutes the core type of evidence, which is not accepted by the committee. Therefore, the high evidence requirements preclude orphan medicines from being added to the NEML.”

A lack of awareness around childhood cancer, was another finding, as many people were not aware cancer could affect children.

“Through the discussions with caregivers, it became evident that many South Africans are not aware that cancer can also affect children. This lack of awareness, among both the general public and healthcare professionals working in primary healthcare, makes timely diagnosis less likely.”

The Western Cape Health Department last month highlighted the journey of five year-old, Liam from Bellville South, who was diagnosed with acute lymphoblastic leukaemia (blood cancer) in March 2022. His symptoms included unremitting fever, pallor, loss of appetite and weight loss.

On how Liam’s family learned about his diagnosis, his mother Desiree Visser said: “Liam was taken to the private doctor twice, but the antibiotics prescribed didn’t help him.

“The doctor also couldn’t tell us what was wrong with Liam. Then we took him to the dentist because his teeth and mouth were affected.

“They recommended we take him to Tygerberg Hospital’s paediatricians.

I wanted to faint when the doctor told me that she wanted to make sure what type of cancer Liam (then two years old) had.”

Following his diagnosis, Liam received intensive chemotherapy.

A stem cell transplant was done at the Red Cross War Memorial Children’s Hospital in April 2023. Liam’s sister, Payton, was his donor.

To increase awareness on childhood cancer, the researchers recommended actively engaging schools and other early childhood development systems.

Further recommendations included a thorough review of the completeness of the NEML, “with active involvement from paediatric oncologists” to facilitate better access to cancer medicines not listed.

The reinstatement of care grants to families of children undergoing cancer treatment to cover the additional costs associated with treatment was further recommended.

“In order to improve survival and reduce the burden of childhood cancer on South African families, representation of issues that affect children in a future update of the NCSF is key.

This begins with acknowledging that childhood cancers are a distinct group of cancers requiring targeted interventions. Fundamental therein is a clear operational definition for rare diseases and orphan medicines, facilitating prioritisation in the pharmaceutical value chain. To further improve access to childhood cancer medicines, there is a need for flexible pricing solutions and exemptions from importation requirements, as these medicines cannot benefit from bulk purchasing.”

National health department spokesperson Foster Mohale said: “As part of efforts to coordinate the response to the burden of cancers in the country, the department will, in the next few weeks, convene a meeting with various organisations working on cancer in the country to align their work to eliminate duplications and complement each other.

“We are aware of the concerns about access to cancer treatment in some areas around the country, while we address contributing factors, we are equally working on awareness campaigns to promote regular cancer screening for early detection, which leads to effective treatment.”

Cape Times