According to the recently released Diabetes Summit report, around 4.2m South Africans are estimated to be diabetic, while Percept, a Cape Town-based consulting firm, reckons that in 2019, just under 5.6m people had diabetes, a number it has projected to increase to 8.75m by 2040.
However, the actual number is not known, according to the report.
“There is a significant underestimation of the challenges posed by diabetes in South Africa. Currently, prevalence data are primarily obtained from estimates released by the International Diabetes Federation (IDF), but … there is a lack of data to closely track trends,” states the report.
Another glaring problem is that patient records are still mainly paper-based and there is no standardisation of the information being collected, reports Health-e News.
”Poor surveillance hampers efforts in prevention and care, and there’s an urgent need to streamline data collection processes to make it easier to capture accurate and comprehensive data,” says Dr Patrick Ngassa Piotie, one of the compilers of the Diabetes Summit report and co-founder of the University of Pretoria’s Diabetes Research Centre.
Piotie, who’s also the chairperson of the non-profit organisation Diabetes Alliance, which organised the summit, says an integrated, digitised surveillance system can provide real-time data on diabetes prevalence, risk factors and outcomes, enabling targeted interventions and research initiatives.
Diabetes is among the top causes of death in South Africa, claiming 32 100 lives in 2020, and, according to a recent Stats SA report, diabetes-related deaths more than doubling in the decade from 2008-2018.
Dr Nireshni Chellen, a specialist scientist at the South African Medical Research Council’s Biomedical Research and Innovation Platform, told Health-e News that unreliable data for monitoring diabetes prevalence significantly hampers efforts to combat the disease.
“When data are inconsistent or inaccurate, it becomes difficult to gauge the true scale of the problem, allocate resources effectively and implement targeted interventions. Policymakers and healthcare providers rely on accurate data to understand trends, identify high-risk populations and monitor the success of treatment programmes,” she said.
Flying blind and other gaps
The government’s efforts to address the issue are outlined in the National Strategic Plan (NSP) for the Control and Prevention of Non-Communicable Diseases.
In particular, the NSP sets the goals of 90-60-50. That is, that 90% of adults know whether they have raised blood pressure, 60% of people with raised blood pressure will receive interventions, and 50% of people receiving interventions for hypertension will have controlled blood pressure levels. Hypertension is a key risk factor for diabetes.
However, Piotie points to a roadblock: there were no baselines when the targets were announced. There have also been no efforts to monitor the implementation of diabetes policies.
“The country is not on track to meet the 90-60-50 targets because we haven’t seen any significant intervention towards achieving them,” he said.
The report highlights the lack of diagnosis, suboptimal management, and inadequate investment in diabetes prevention and control, leading to higher financial and resource expenditures by the health system when tackling the complications resulting from unmanaged diabetes.
A compounding issue highlighted is that many South Africans don’t have regular screening, and lack awareness of the symptoms of diabetes – so one out of every two people with diabetes remains undiagnosed.
Chellen says lack of awareness leads to late diagnosis and poor management of the diseases, and that the high cost of diabetes management is huge burden on patients, many of whom do not have adequate health insurance coverage.
“Access to healthcare facilities, especially in rural areas, is limited, affecting the ability of many people to get regular check-ups, early diagnosis and proper management of diabetes. For many, particularly low income communities, the cost of managing diabetes is prohibitive.”
There are also significant disparities between resources in the public and private healthcare sectors – and even though new diabetes drugs are available, many patients reliant on public health services don’t have access to them.
“Funding for diabetes care in this country is generally insufficient. Public healthcare is underfunded and overburdened with limited resources for non-communicable diseases like diabetes. Most of the budget goes to communicable diseases like HIV and TB. This results in limited access to essential medications, diagnostic tools and education programmes,” she said.
Recommendations
“South Africans are more likely to die from diabetes than from any other diseases,” said Piotie, calling for more research investment to ensure interventions the Health Department decides to implement are evidence based.
“If we don’t spend today, we will have to spend more tomorrow, on complications like amputations, kidney failures, dialysis, heart failures… I don’t believe that the country can cope if this is left unabated.”
The harsh reality is that diabetes rates are increasing and staggering numbers of people are struggling to keep the condition under control.
For those on treatment, available data suggest that many are faring poorly, reports Spotlight.
A key measure of how well people with diabetes are doing is their blood sugar levels. This is measured using a glucose testing device (multiple times a day) and an HbA1c test (every few months). Having an HbA1c measurement below 7% indicates the diabetes is controlled.
By 2027, the National Department of Health (NDoH) wants at least 50% of people receiving care for diabetes to have their blood sugar under control. The available data though, suggest we are falling far short of this target.
Researchers who reviewed medical records of diabetes patients seen in primary clinics in Tshwane between February and May 2019 found that only 23% of the 346 patients who had an HbA1c measurement had controlled blood sugar levels. A review of data from more than 100 000 patients in the Western Cape with HbA1c measurements found that only around one in four had their blood sugar levels under control.
Over time, poorly controlled blood sugar causes cumulative damage to the body that can result in complications like amputation, blindness, kidney damage and stroke. While we do not have data on how many people have experienced such complications from diabetes, the fact that Stats SA ranks diabetes as the second leading cause of death in the country (and first among women) is a clear indication that the situation is out of hand.
Comparisons with HIV are informative. Detailed HIV data are routinely collected and government has set an ambitious target that by 2030, 95% of people with HIV who are taking antiretroviral treatment should have undetectable viral loads. By contrast, the target to ensure that only half of people receiving diabetes interventions have controlled blood sugar levels seems pitifully low.
Not the most convenient medicines
During their lifetimes, most people with type 2 diabetes will need to transition from pill-based medication to insulin pens or injections. People with type 1 diabetes must start insulin immediately after diagnosis.
SA’s public health sector provides the basic medications required to keep alive people with diabetes. But because of the big gap between the drugs available in the public and private sector, government patients have a harder time controlling their blood sugar.
Dr Michelle Carrihill, a paediatric endocrinologist at Groote Schuur Hospital, said private sector patients have everything that’s available internationally, this choice allowing them to select the treatments that best suit their lives, habits and diets.
“But the medications available in the public sector require patients to stick to strict routines of when they eat, how much they eat, and when they exercise.”
It is not all bad news though for state patients – because the government provides free insulin to them, they at least don’t have to ration their insulin as sometimes seen in the United States.
However, the gap between treatments available to public versus private sector users is likely to widen with the health department being forced to take a step backwards from providing pre-filled insulin pens to providing syringes and vials.
While new classes of medicines are transforming diabetes care, high prices and supply constraints means they are unlikely to make it to government facilities here any time soon. Most notable among these are the GLP-1 agonists (semaglutide for example).
Jan Krisna Rodriguez, of Doctors Without Borders (MSF), said the group planned to pilot GLP-1 agonists at its rural Eastern Cape project from next year. Such pilots matter, since the newer medicines will almost certainly be critical to South Africa’s medium to longer term efforts to manage diabetes.
Supply of GLP-1 agonists is expected to improve, and prices are anticipated to fall, as competition increases in the future.
Blood sugar blues
But medicines are only one part of diabetes management, and just as important is the constant monitoring of blood sugar levels. In this respect, diabetes management is much more complicated than HIV, both for patients and for the health system.
For most people with HIV, a viral load test every six or 12 months is sufficient to tell if the treatment is working. But diabetics on insulin must check their blood sugar levels multiple times a day. To do this, they need glucometers – and access is a challenge.
Professor Paul Rheeder, director of the University of Pretoria (UP) Diabetes Research Centre, said not everyone who needed these home-testing devices was given one, and those who do receive them rarely get enough test strips and lances to enable proper monitoring of their blood sugar.
For those who can afford it, a continuous glucose monitor (CGM) may be a more convenient alternative. With a CGM, a sensor is inserted under the skin to transmit ongoing information about the blood sugar levels to an external device or smart phone.
CGMs are becoming the international standard of care. But they are still unaffordable in South Africa’s public sector and are not always fully covered by medical schemes.
Uncertain carers
While the public sector does not have the latest and most convenient blood sugar monitors and medicines we are also not using the tools that we do have as well as we might.
Research from UP found that healthcare workers are not promptly initiating or adjusting treatment based on blood sugar levels or other diabetes control measurements. Many staff, Rheeder said, are reluctant to adjust or change diabetes treatment because they lack the confidence that making the change is the right thing to do.
To manage this problem, UP launched the Tshwane Insulin Project (TIP) in 2019. It provides training on diabetes management to healthcare workers and connects nurses with doctors who can give them ongoing support and guidance on when to start, change and adjust diabetes treatment.
TIP also employs community healthcare workers to check up and support patients. These interventions have been found to improve treatment outcomes, with participants recording better controlled blood sugar levels.
Similarly, in the Eastern Cape’s Amathole District, MSF partnered with the Department of Health to educate and support nurses who treat diabetes.
Advocates say such piecemeal diabetes education programmes for healthcare workers should serve as a starting point for government to implement a comprehensive national plan. When asked about it, the Health Department said it provided continuous in-service training.
Time pressures
Compounding these problems are the staff shortages and resulting time pressure plaguing much of the government healthcare sector.
It takes at least 40 minutes to properly start someone on insulin and explain how it works, said Rheeder. But in public clinics, patients typically only have 15 minutes with a healthcare worker when they are started on insulin.
And while the numbers of diabetes patients are escalating, Carrihill notes that the number of healthcare workers is not increasing, meaning less time spent with patients.
Clearly, without transformative change to the system, the shortage of staff to treat diabetic patients will continue to worsen.
In rural areas, the situation is exacerbated by the distances between where people live and clinic locations. Some diabetics in the rural Eastern Cape walk up to five hours to reach a clinic, said Rodriguez.
MSF is mow piloting interventions to bring diabetes care closer to patients by creating more community medicine pick-up points, which also offer services like blood sugar screening.
Lack of diabetes literacy
Beyond all these health system issues is a broader societal problem of people simply not knowing enough about diabetes.
Bridget McNulty, founder of Sweet Life (an online community of people with diabetes), said that no national education campaign for diabetes exists, and where material does exist, it is often dense, muddled, and not pitched at the right health literacy levels for its intended audience.
Hendricks concurred: “There is nothing in the public sector, maybe a pamphlet here and there, but try to read it and see if it actually makes sense to you.”
Additionally, given the limited patient interaction with healthcare workers in the public sector, the Diabetes Alliance said a better job is called for in empowering people to self-manage their diabetes.
The advocates want government to develop and implement an evidence-based education campaign embedded in relevant local research and that targets diabetics.
They say dietary advice must be derived from foods that are affordable, easily available, and already part of people’s diets, and guidance on exercise must not ignore the lack of safe spaces to exercise in many communities
What to do?
There are some glimmers of hope. Maybe most encouraging is that diabetes advocates have been collaborating and organising. As with HIV, chances are that activist pressure will be critical to bringing about sustained progress.
The recommendations made by the diabetes advocates at the 2023 Diabetes Summit and which are mapped out in the report, call on government to properly invest in the diabetes response, provide better education and support to healthcare workers treating diabetes, provide education to diabetics to enable them to manage their condition, and establish monitoring systems so we can see how well our investments and interventions are working.
These are all sensible recommendations, however, as always, getting senior government officials to agree on broad policy points is one thing, but delivering concrete progress at the clinic is something quite different.
Seeing it through will require years of focused and sustained monitoring and activism from patients, healthcare workers, policy-makers, and government officials.
A good start would be simply for Health Minister Dr Aaron Motsoaledi to acknowledge we face a diabetes crisis.
“Diabetes is a looming crisis for the country, the health sector and healthcare workers,” said Piotie. “There is no way we can keep doing things as we have been doing them.”
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See more from MedicalBrief archives:
Diabetes a leading killer in SA, but we don’t know how many have it
At least 60% of Africa’s diabetes goes undiagnosed – global report
More than 1.3bn people will have diabetes by 2050, study predicts