Statistics South Africa’s report on cancer in South Africa (2008-19) released at the end of March is intended to inform cancer treatment and a cancer management strategy for the country. This is especially necessary since the National Strategic Framework for Cancer lapsed in 2022.

However, there are questions about just how accurately cancer cases and cancer deaths are being recorded in South Africa. The resulting gaps in data and data management raise concerns about a skewed picture of the actual disease burden. The unknowns are potential knock-on effects for resource allocation and infrastructure planning.

Cancer is a rising crisis for South Africa as the World Health Organization said in February 2023 that an estimated 1.1 million new cases are being reported in Africa each year and there are about 700,000 deaths on the continent from cancer each year. The WHO estimates that by 2030, deaths from cancer on the continent will edge up to one million a year. It added that 70% of cancer deaths around the world occur in low- and middle-income countries, “where resources required for prevention, diagnosis and treatment of cancer are limited or non-existent”.

In 2018, females in South Africa accounted for 51.3% of cancers diagnosed while males accounted for 48.6%. (Photo: Marco Verch / Flickr)

The Stats SA report is based on information from the National Cancer Registry and Stats SA’s mortality and death notification data. It provides a breakdown of the incidence and deaths caused by different types of cancers across the population based on age, race, gender and province of residence over the reporting period.

The report’s findings are chilling, showing that cancer-related deaths increased by 29.3% from 2008 to 2018, even as overall mortality in the country dropped by 24.1% in that same period. In 2019, just more than 85,000 people in South Africa were diagnosed with cancer, according to the report, and in 2018 there were just under 44,000 registered deaths due to cancer.

Key findings

According to the report, in 2018, cancer accounted for 9.7% of all deaths recorded in the country, making it the fourth-leading cause of mortality after circulatory diseases (such as stroke, hypertension and heart disease) at 18.5%, infectious and parasitic diseases (such as tuberculosis and HIV) at 16.4%, and external causes of mortality (such as accidents, assault and firearm-related deaths) at 12%.

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It flags concerns that cancer and other noncommunicable diseases are “of increasing concern in developing countries because of their transitions from low-income to middle-income status [and shows] the influence of globalisation on consumption patterns and the ageing of populations”.

Among females, the most diagnosed cancers were breast cancer. (Photo: Nasief Manie / Spotlight)

The report found that in 2018, females accounted for 51.3% of cancers diagnosed while males accounted for 48.6%. The median age of diagnosis of cancer was 59 for females and 64 for males and the median age at death due to cancer was 62 for females and 64 for males.

“This suggests that cancer in males may be diagnosed at more advanced stages than in females, thus the shorter survival period,” the report found.

The most commonly diagnosed cancers among males were prostate, colorectal and lung cancers. Among males, bronchus and lung cancer accounted for 18.7% of cancer-related deaths, prostate cancer contributed 16.7%, oesophagus 7.5%, colorectal 6.8% and liver and intrahepatic bile ducts 5.2%.

Another factor is that South African regulation makes the head of a facility responsible for reporting a cancer case and not all facility heads comply.

Among females, the most diagnosed cancers were breast cancer, followed by cervical cancer and colorectal cancer. Between 2008 and 2018, deaths due to cervical cancer increased by 50.5% (from 2,653 in 2008 to 3,994 in 2018). Those due to breast cancer increased by 42.4% (from 2,665 to 3,796), while those due to bronchus and lung cancer increased by 38.2% (from 1,491 to 2,060) and colorectal by 45.1% (from 945 to 1,371).

Incomplete data

Salomé Meyer of The Cancer Alliance – a civil society collective of cancer support organisations and advocates – says the key concern about the report is what it doesn’t factor in: gross underreporting of cancer incidence and cancer deaths in South Africa. Meyer says that in some instances this is believed to be as high as 40%. But she says without proper mechanisms and standardised population-wide data gathering, even this number remains unverifiable.

In 2019, just more than 85,000 people in South Africa were diagnosed with cancer, according to a report, and in 2018 there were just under 44,000 registered deaths due to cancer. (Photo: Nasief Manie / Spotlight)

“There are multiple reasons for the discrepancies. The private sector does not necessarily provide details of their cases. Then there’s the situation that not all cancers are diagnosed through pathology testing and the National Cancer Registry is a pathology-based register. Another factor is that South African regulation makes the head of a facility responsible for reporting a cancer case and not all facility heads comply,” says Meyer.

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In addition, Meyer says deaths are registered according to a secondary cause of death. For instance, if someone is diagnosed with cancer but their organs fail and they die, their death is recorded as death from organ failure, not cancer. Meyer says a further complication arises when there is no medically trained person to do death reporting.

“A traditional leader is allowed to do death reporting and to provide a death certificate, but if they are not necessarily trained to diagnose that someone possibly died of cancer, they will not record the death as a cancer death,” she says.

Meyer says what is needed is a population-based cancer registry as well as survival data. These two additional streams of data would provide a clearer picture and also answer important questions about how well South Africa is managing cancer patients and where there needs to be more targeted intervention.

“We need to understand why there is underreporting and also how some people are living longer after their diagnosis and where and how inequities are contributing to some people getting treatment later and dying sooner,” she says.

‘Massive challenge of underreporting’

Dr Mazvita Muchengeti is head of department for the National Cancer Registry at the National Health Laboratory Services, which is part of the National Institute for Communicable Diseases (NICD). Muchengeti acknowledges that, for some cancers, there is a massive challenge of underreporting.

“For well-biopsied cancers like breast cancer, the stats are comparable to hospital registries, but for cancers that are primarily diagnosed radiologically or clinically – like liver and lung cancers – underreporting is very high,” she says.

Muchengeti says that from 2011, the National Health Act made cancer a reportable disease. She says compulsory reporting has led to an improvement in cancer reporting, but: “There is an increase in the number of reported cancers; this does not necessarily translate to an increase in cancer, we are just counting cancer cases better because reporting is now compulsory.” To what extent increased reporting is driving the rising cancer numbers reported by Stats SA is not clear.

Muchengeti also confirms that the National Cancer Registry, which was established in 1986, does not hold data on the full count of cancers in the country.

“Our National Cancer Registry (NCR) is pathology-based, meaning data of cancers confirmed by laboratory means. So, cancers diagnosed by other means such as clinically or radiologically diagnosed cancers are not counted.”

Cancer patients in Gauteng are set to benefit from new funding and a decision to let the private sector help with Gauteng’s oncology backlog of 3,000 patients. (Photo: SECTION27 and Cancer Alliance)

The NICD was in the process of establishing population-based cancer registries which would be launched at “sentinel sites”, which had not been named yet.

“There are limited funds and human resources for the establishment of population-based cancer registration (which counts all cancers), but there is need for cooperation and harmonisation of all cancer data sources,” she says, “both public and private (such as data from laboratories, medical aid societies, managed care organisations and death registry data) in order to get a full picture of cancer in the country.”

Spotlight asked national health spokesperson Foster Mohale about progress and timeframes for the new National Strategic Framework on Cancer; the state of underreporting of cancers and the non-collection of survival data; the breakdown of government spending on cancer; interventions to improve data collection, management and analyses, and the department’s priorities informed by the latest Stats SA data. Despite several follow-ups, there was no response by time of publication. DM

This article was published by Spotlight – health journalism in the public interest.