In 2017 and 2018, public sector cancer services made headlines for failing patients across several of South Africa's provinces. Now, several years and a few government interventions later, experts say there have been improvements, but significant issues remain.
At the time, media coverage and civil society criticism highlighted a lack of radiation oncologists and other staff, broken or limited equipment and facilities, and the resulting extensive waiting times which lead to possibly preventable deaths. KwaZulu-Natal and rural provinces like Limpopo and Mpumalanga appeared to be worst affected.
The South African Human Rights Commission (SAHRC) investigated the problems in KwaZulu-Natal and said the rights of patients had been violated by the lack of access to care. Its report called for both direct interventions and more national strategic development.
The department of health has put a National Cancer Strategic Framework 2017- 2022 in place, and various policies, such as for breast cancer, cervical cancer, and palliative care. More are being developed for the future, including policies on lung and prostate cancer, which are said to be close to finalisation and a policy on childhood and adolescent cancer which is in the works.
Sandhya Singh, acting chief director of non-communicable diseases at the national department of health, acknowledges that this framework "was approved at a time when the country was in a cancer service delivery crisis which resulted in deaths and suffering". She emphasises that the services must be strengthened even further, but also highlights the developments the strategic work brought about.
Contracting private sector oncologists
These include contracting private sector oncologists in five provinces, leading to most provinces exceeding the targets in their Annual Performance Plans for 2019/2020. She says there has been an overall increase in linear accelerator machines purchases by the government since 2017. These radiotherapy treatment machines were at the centre of some previous complaints, such as their malfunction at Addington Hospital.
The KwaZulu-Natal unit manager of the Cancer Association of South Africa (CANSA), Lorraine Govender, reports some positives for the province, including that the communication between civil society and the department has improved and waiting times for treatment have been shortened to six months, from the norm of up to nine months previously.
Govender says public-private partnerships (PPPs) have improved staffing issues and speaks of dedicated doctors. "In the last three years, we haven't had problems. So machines do break from time to time, you know, they need to be serviced and repaired, but the waiting periods haven't impacted on the patients as much as it has been in 2017."
One hospital at the centre of the previous concerns, Addington Hospital in Durban, appears to have experienced significant improvements since government interventions following the SAHRC report. The head of advocacy at CANSA, Zodwa Sithole, says that as far as she hears from patients who get treated there, "there are currently no concerns from Addington".
Rory Callaghan is the chair of the South African Society of Clinical and Radiation Oncology. He works in private practice and as part of a PPP at the Inkosi Albert Luthuli Central Hospital in Durban. He agrees that there have been some strong improvements since the days when there were not enough specialists, and that these partnerships are contributing. "I think there has been steady, slow progress in the last three or four years. I think the state sector to a degree is learning to trust the private sector and learning to play together nicely with us."
While the outcry and government response seems to have brought about some improvements, Linda Greeff, a private social worker, chairperson of the Cancer Alliance, and ovarian cancer survivor, says the crisis continues. "I am very disturbed by the lack of respect [for] human rights when it comes to service delivery to cancer patients in the public sector."
She says delays are still a significant problem, due to a lack of referral pathways to treatment and a shortage, not only of radiation equipment, but other important needs such as X-rays, PET scans, and laboratory capacity. Some places she says are under pressure are Bloemfontein and East London and Steve Biko Academic Hospital in Pretoria.
The challenges of course vary from place to place and data is not always easily available. CANSA highlights various issues around the country, for instance, long waiting periods in the Eastern Cape due to broken radiation machines.
Sizwe Kupelo, Eastern Cape Provincial Health Spokesperson, says that while there was a problem with the radiotherapy machine at Livingstone Hospital in Port Elizabeth, it is now fixed. He says that the machines at Frere Hospital in East London are working, and that the waiting period for treatment is up to two months because of the volume of patients.
In Limpopo, CANSA says there is a shortage of chemotherapy drugs, such as Vincristine, which is part of greater problems around the shortage of oncological drugs. The organisation has also heard of broken machines causing longer waiting times in that province.
Neil Shikwambana, Limpopo provincial health spokesperson however says that they are not currently experiencing a shortage of that particular drug. "We can also confirm that our machines are not broken, but from time to time we hit a snag due to issues of general maintenance."
While Greeff reports improvements in the Western Cape regarding backlogs and equipment, CANSA reports some difficulties, particularly linked to the COVID-19 pandemic. For instance, it says the Oncology Centre at Tygerberg Hospital "did not have masks for their cancer patients that were coming for their appointments and approached us to source masks and equipment". Communications officer for Tygerberg Hospital, Laticia Pienaar confirms this, and adds that staff members and other organisations also donated cloth masks for outpatients.
The Mpumalanga district organiser for the Treatment Action Campaign (TAC), Rebecca Malambu, says that there are long waiting times in the province and not enough doctors. She says that cancer care and testing is accessed at various clinics and waiting time to see a doctor on the day depends on the number of patients, but is usually under three hours. Pap smear results are sometimes delayed, taking about four or five weeks, and sometimes patients do not receive their results.
Malambu says Piet Retief Hospital has one doctor who attends to cancer care, but also has other responsibilities, such as performing C-sections. He is about to see around five oncology patients a week. "At the moment, they are busy calling people from the waiting list to access cancer services, but their challenge is that some health care users are not coming on their appointment date," she says.
Spotlight gave the Mpumalanga Department of Health an opportunity to respond to Malambu's comments, but did not receive a response by the time of publication.
While the civil society groups applaud the national framework and policies, they say a lot of the ongoing problems are linked to these not having been fully implemented yet. Sithole explains that while the policies are extensive, the documents themselves emphasise the importance of implementation.
Govender confirms that it is still a concern and that there are structural processes that must take place, such as training staff and establishing oncology units. She suspects that some delays may have been in part due to political shifts, such as changes in ministers. "I think what happens is when they develop the policy, and they launch the policy, it happens at a certain level, but it still needs to cascade down to provincial level and I think the logistics in terms of putting everything in place is the challenge."
Greeff says the policies are great, and she is thankful for them, but is concerned about the funding. "So what does it help to have a policy or a strategic framework if there is no budget allocated to that?" Greeff says that oncology service funding gets lost in the structure of the medical system. The Cancer Alliance advocates for public oncology services, including treatment machines and medicines, to be within a national budget to ensure the ring-fencing of cancer cost across all provinces.
While statistics about staff are difficult to get, there seems to be general agreement that shortages continue.
Jodi Wishnia, public health consultant at Percept, says that their modelling work done between 2017 and 2019, shows that the number of oncological medical specialists in the sector was significantly lower than the need. "We found that in 2019, there were 146 radiation oncologists active in South Africa, 107 of these in the private sector and 39 in the public sector." This meant that there was a ratio of 0.25 radiation oncologists for every 100 000 people living with cancer in the country, whereas Percept's calculated target should be about five times more at around 1.28.
Percept's projections show that it is likely that the country will increase this supply to around 0.71 by 2040, but notes that this is still below the target. This projection also anticipates a narrowing of the gap between the public and private sector split of oncologists, due to an increase in the intake of registrars in this specialty.
Callaghan says that while the PPPs have improved the availability of staff, he is concerned about the longevity. "One of the challenges that remains is how sustainable it is in the long term? Is the government going to keep paying contract workers, effectively, to run a service that should be run by permanent staff?" He says that working in the state sector can be difficult, and that these complexities range from issues with pay to the working conditions. Contracts for private doctors in the programme last for half a year, which creates uncertainty.
Greeff notes that private doctors in the partnerships are paid significantly differently to the public sector staff in the same units, often in provinces that have backlogs and staff shortages. She says that the Cancer Alliance is advocating for PPPs "that are truly transparent and controlled [and] that will ensure more patient-centric focus". She wants this to be more affordable and widely available.
Access to data
The civil society groups are also worried about the state of the National Cancer Registry (NCR), which falls under the realm of the National Health Laboratory Services (NHLS) and is meant to inform the policies of the National Department of Health.
The last available national statistics are from 2016. Dr Elvira Singh, the head of the NCR, says that statistics from 2017 are expected very soon. "The NCR aims for a lag time of three years, which is within international standards for cancer reporting."
Greeff echoes these concerns, saying that not having updated data means that there is no clear picture of how big the backlog of cases is. "And in cancer, if you think about it, it's a small group of people but it is an illness that you cannot afford backlogs in, because if you don't treat patients with advanced cancer, their chances of survival [are] zero."
The other problem is that the last national report was a pathology-based, not population-based registry. This means it lists the number of cases for a specific list of cancers according to sex and race, but not age, location, or other factors. "It's just the labs feeding into the registry, without us knowing where the people are coming from," Govender says.
She explains that this means there is no sufficient breakdown to intervene on a targeted level, for instance, to understand where hotspots are located that may be influenced by environmental concerns, or how childhood cancer prevalence may be specific. Some of this has been done in the past, such as childhood cancer list summaries by CANSA in 2007.
In 2018, a detailed registry was released for the Ekurhuleni area. Dr Elvira Singh says that this is a pilot project and that the registry plans to add three other location-specific cancer registries. She says that this plan depends on funding.
"It is not feasible to collect detailed data on these different cancers, as the characteristics of each of these cancer types are unique," Singh says. "Detailed data should be obtained from hospital-based registries, and disease specific cancer registries, which is outside the scope of the National Cancer Registry operations."
While these complexities are long-running, the COVID-19 pandemic has had a significant impact on the public health care system, including oncology services. "COVID has made things so difficult," Sithole says. She explains that patients are scared to go to hospitals, and that this has made it more difficult to have a clear picture of cancer prevalence at the moment.
During the early months of the pandemic there were concerns over some surgeries not taking place. Callaghan says that this issue particularly affects the early detection of cancers. "They are sitting on lumps because there's this paranoia and this fear that they can't go to a hospital [and] they're going to get sick and die from COVID if they stick their nose into the hospital. So they'll feel a lump in their breast and they'll just ignore it for six months because they're too scared to have anything done about it."
Sandhya Singh says in November the department hosted a meeting with civil society, provinces and representatives of the World Health Organization to plan "a catch-up drive for cancer services" to mitigate some fallout from COVID-19. They hope to strengthen communication between all levels of care and across health programmes, and strengthening civil society and patient engagement. More comprehensive processes with all provinces are planned in the next months.
NOTE: The TAC is mentioned in this article. Spotlight is published by SECTION27 and the TAC, but is editorially independent, an independence that the editors guard jealously. Spotlight is a member of the South African Press Council.