By Elna Schutz, Health-e News
Governmental targets and advocacy declarations continually push for diabetes to be better addressed in the public healthcare system. Despite the disease being the top underlying natural cause of death, patients continue to fall through the gaps.
With the 2027 deadline for South Africa’s non-communicable disease targets approaching, the Diabetes Alliance is launching an accountability framework on Thursday, 12 November, to track whether commitments to improve diabetes care are being implemented.
Dr Patrick Ngassa Piotie, Chairperson of the Diabetes Alliance and the co-founder of the University of Pretoria Diabetes Research Centre, describes a public healthcare system where patients face gaps in record-keeping, testing and treatment.
Health-e News’ diabetes series, reported by its network of community journalists, shows that these experiences are a reality for many patients across South Africa.
An elderly couple in Limpopo have to forgo their chronic medication due to medicine supply challenges. A man in Duduza, Gauteng, receives his medication but was not taught how to use it. A woman in Meriting township can’t afford transport to collect her diabetes medication, even though public healthcare is free. The stories seem endless.
As Piotie says, “In a system like this, opportunities to fail are numerous.”
The true scale of diabetes remains unclear
A key hindrance to better addressing the diabetes crisis is that the statistics are unclear. Stats SA points to mortality linked to diabetes being at around 6,1% of all recorded deaths in 2024. The International Diabetes Federation estimates 2,3 million South Africans aged 20-79 were living with diabetes in 2024, a figure projected to rise to almost 4 million by 2050.
But overall, experts assume that the numbers may be worse, and that there is not enough detail to fully inform a response.
In fact, Bridget McNulty, the CEO and co-founder of the Sweet Life Diabetes Community non-profit, says that about half of South Africans who have the illness are likely undiagnosed. Piotie says this may be as high as 70%.
“Non-communicable diseases are less threatening because they’re not contagious, and so it feels like there’s less urgency,” McNulty says.
This all means that the health response is being based on insufficient data. Foster Mohale, the National Department of Health spokesperson, agrees that change is necessary.
“Strengthening these data systems is essential to enable the Department to more accurately assess progress against the 90-60-50 targets, identify gaps in service delivery and inform appropriate programme interventions,” he says.
Ambitious targets, little progress
There are clear goals set out for diabetes care, such as in the Department of Health’s National Strategic Plan for the Prevention and Control of Non-Communicable Diseases (2022-2027). It aimed for a 90-60-50 target, where 90% of all adults would know their blood glucose status, 60% of people with raised blood pressure or blood glucose would receive intervention, and 50% of people receiving interventions would be controlled.
With the plan’s 2027 deadline approaching, civil society organisations are calling for greater accountability over progress towards these targets. The Johannesburg Declaration was drawn up by the Diabetes Alliance and others following the 2025 Diabetes Summit. It lays out a clear set of demands for various public and private stakeholders, such as the president declaring diabetes a national public health crisis.
Piotie says that they have reached out to Parliament, the Ministry of Health, the Presidency and others, with some acknowledgement of receipt but little concrete action.
One institution that has responded is the South African Medical Research Council, which invited the Diabetes Alliance to present information on the Johannesburg Declaration and later established a diabetes interest group for researchers in the field to work together more integratively.
In reaction to the overall lethargic response, the Diabetes Alliance will launch an accountability and monitoring framework on Thursday,12 November ahead of World Diabetes Day on 14 November. It will include a scorecard of what stakeholders have done.
The framework will track commitments made in the Johannesburg Declaration, including political leadership, coordination, financing and parliamentary oversight. It aims to assess whether these commitments are translating into government action and provide a basis for regular public reporting.
“We are just building a mechanism to ensure that we can keep some level of pressure and build momentum in order for us to reach a stage where we can get clear answers to what we are requesting or asking, and most importantly, to see urgency in terms of us responding to the diabetes crisis,” Piotie explains.
Mohale names multiple efforts in relation to the Johannesburg Declaration, particularly that there are Department of Health staff across different levels dedicated to non-communicable diseases, which includes diabetes.
Where diabetes care fall short
The shortcomings of the current system are visible across the care cascade, from screening to diagnosis and continued care and control.
Mohale says more than 43 million screenings were recorded in the 2025/2026 financial year, according to data from the District Health Information System. 105 382 people were then put on treatment. The diagnosis and care data were not available or collected.
Piotie says that successful screening is not just about making up large numbers. It should be more precise and based on risk factors like age, family history, and lifestyle, which would also waste fewer resources. “So when you restrain the number based on the risk factors, you can have a higher yield.”
Pitotie explains that the high level of missed diagnoses occurs for various reasons. For instance, he regularly hears of children with Type 1 diabetes who are dismissed as having the flu several times before a correct diagnosis. The symptoms of Type 2 diabetes are often not known or recognised by patients.
McNulty adds that stigma holds people back from screening or testing. This is in part due to people assuming what someone with diabetes looks like or lives like, and informed by stories of people who had diabetes complications.
The rebranding of Type 2 diabetes unfortunately added to this instead of encouraging helpful changes. “What happened instead was that by calling it a lifestyle condition, people who were diagnosed with Type 2 were blamed for getting diabetes,” she laments.
Even once diagnosed, the problems continue, from a lack of availability of medications to human resources and inefficiencies. For instance, the continued paper filing system used at many clinics means that there is little continuity of care.
Professor Peter Raubenheimer, the head of the Division of General Internal Medicine at Groote Schuur Hospital and the University of Cape Town, says that while medicines and diagnostic services do exist, they falter where funding and staff are inadequate.
“There’s not really any evidence of progress in the last 10 or 20 years to match what is a massive growing burden of disease,” he admits.
Additionally, diabetes is a particularly difficult disease to manage, in part because it is a multi-system disorder. While there are clinical guidelines, they are largely outdated in terms of new strategies and medicines. Piotie says new guidelines are in the making.
This all leads to a heavy burden of complications, like amputations, because the disease is often allowed to progress to dangerous levels. This is in comparison to other regions that may have a larger diabetes population, but control the disease better. Raubenheimer explains, “We have the classic developing country profile of very young people developing complications and diabetes, including death.”
Despite the overall negative picture, there are some improvements in diabetes care to highlight. For instance, the National Health Laboratory Service’s recently unveiled dashboard takes a step towards improving statistics.
Mohale notes that “the department is currently piloting the Electronic Health Record (EHR) system which will eventually be implemented across the country to address monitoring and surveillance challenges currently experienced.”
He also points to various other efforts under the Amplifying Diabetes Care and Treatment in South Africa (DACT-SA) project.
McNulty says care is improving, despite ongoing challenges. For example, she points out that “South Africa is one of the countries where insulin is freely available to all.”
Calls for better care and accountability
Yet, the cry for better attention to the disease rings loudly.
Raubenheimer puts it down in major part to the lack of a funded, specific, and realistic implementation plan for diabetes by the government. “I don’t think it’s a health priority for the country,” he says. “Implementation, resourcing, coordination, and accountability are not strong enough to deliver any intended improvements, really.”
Several experts call for the establishment of a National Diabetes Registry throughout primary care facilities. Raubenheimer adds that he would want a fully electronic tracking system to go along with it. “It’s been twenty years of talking about it, but no national unique identification number.”
McNulty empathises with how overburdened the health system and its staff are, but says pressure must be maintained on all levels of authority to improve care. She points to a bottom-up approach, where ordinary people, patients and healthcare workers push for better care.
“I think that’s the only way we’re gonna turn the crisis around is with like engaged, empowered individuals all over the country,” she says, despite her frustration with the government for not doing more.
In terms of an actionable way forward, Mohale points to continuing staff training and awareness programmes.
Piotie holds some hope that active change, like increased education and targeted screening, could make a difference. He wishes for newer technologies and medicines to be implemented. “There are a lot of things that we can do to get things better.”
