The South African government has adopted a national target to bring the blood sugar levels of people with diabetes under control. But beyond the target, the country's response to diabetes is falling far short. In this Spotlight special briefing, Catherine Tomlinson looks at what the country needs to do to better manage this often fatal disease and how we can draw lessons from the response to HIV.
Amanda Mashego leans forward to inject her right thigh with insulin through a slit in her floor-length yellow and black printed dress. She is on her way to a wedding in KwaZulu-Natal and it is fitting that Eyami, which expresses deep affection for a significant other, by South African singer Lwah Ndlunkulu, plays in the background of this 15-second video posted on TikTok.
The mere act of getting an insulin shot racked up more than 3 million views. For Mashego it is a sign that her TikTok profile is a powerful source of information about diabetes. When she was diagnosed with the condition and started researching it online, she felt the available content didn't resonate with her.
"I didn't come across any people that looked like me, that spoke like me, that knew what I was going through," the 26-year-old University of Johannesburg student tells Spotlight.
People who comment on her videos ask her where she injects her insulin, how often she changes her needles, and if insulin needs to be refrigerated.
Such questions are a symptom of a deeper shift taking place in South Africa. The harsh reality is that diabetes rates are increasing and staggering numbers of people are struggling to keep the condition under control.
An earlier Spotlight special briefing focused on the lack of good data on the diabetes crises in South Africa, which is needed to inform an effective response. In this briefing, we turn our attention to how we can improve the care that people with diabetes receive once they've been diagnosed.
Worrying numbers
Percept, a Cape Town-based consulting firm, reckons that just under 5.6 million people were living with diabetes in South Africa in 2019. That number is projected to increase to 8.75 million by 2040.
The International Diabetes Federation estimates that just over half of people living with diabetes in the country have been diagnosed and even fewer are receiving treatment. For those who are receiving treatment, available data suggests that many are faring poorly.
A key measure of how well people with diabetes are doing is their blood sugar levels. This is measured using a glucose testing device (which may need to be used multiple times a day) and an HbA1c test (which should be performed every few months). Having an HbA1c measurement below 7% indicates that one's diabetes is controlled.
By 2027, the Department of Health wants at least 50% of people receiving care for diabetes to have their blood sugar under control. The available data though, all from pockets of academic research, suggests that 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 over 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 one's body that can result in severe complications such as amputation, blindness, kidney damage, and stroke. While we do not have data on how many people have experienced such complications due to diabetes, the fact that Statistics South Africa ranks diabetes as the second leading cause of death in the country (it is ranked 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 - a measure of how well one's HIV treatment is working. 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
Over the course of their lives, most people living 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.
South Africa's public health sector provides the basic medications required to keep people with diabetes alive. But there is a big gap between the medications available in the public sector and those in the private sector. Because of this gap, public sector patients will on average have a harder time keeping their blood sugar under control.
Doctor Michelle Carrihill, a paediatric endocrinologist at Groote Schuur Hospital, tells Spotlight in the private sector "you have everything that's available internationally" and this choice allows people to select the treatments that best suit their lives, habits, and diets. By contrast, she says the diabetes 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.
Salih Hendricks, whose right leg had to be amputated due to diabetes-related complications, has experienced this first-hand. "They won't give you the up to date or newest type of medication in the public sector, but the basic medication will keep you alive with hard work," he tells Spotlight.
Lower limb Amputations can be prevented by adding the Vascular Scanning to your yearly checks. Foot health care is important for diabetics. Diabetics complications creeps on us at any age and at anytime. There are many diabetics that cannot cope with change. #diabetes #limbloss pic.twitter.com/b9lmZ14F9z - -- Salih Hendricks (@salih_hendricks) January 31, 2023
It is not all bad news though for public sector patients. As Hendricks points out, since insulin is free of charge in the public sector, people at least don't have to ration their insulin as sometimes seen in the United States.
The gap between the treatments available to public versus private sector users is set to widen as the health department is being forced to take a step backwards from providing easy-to-use pre-filled insulin pens to providing syringes and vials. This is because the international insulin manufacturers on which South Africa has previously relied for supply are pivoting their manufacturing lines to serve more profitable markets for new weight loss drugs - which are also effective in treating diabetes. The health department is taking steps to ensure insulin pens remain available to those for whom vials and syringes are particularly difficult to use, including young children, the elderly, and the visually impaired.
While new classes of medicines are transforming diabetes care, high prices and supply constraints means they are unlikely to make it to South Africa's public sector any time soon. Most notable among these are the GLP-1 agonists (semaglutide being the best known example). These medicines were originally used to treat diabetes, but are increasingly also used to treat weight problems. Jan Krisna Rodriguez, of Doctors Without Borders (MSF), says the group plans to pilot the use of 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 get to grips with diabetes. Supply of GLP-1 agonists is expected to improve, and prices are anticipated to fall, as competition increases in the coming years.
Blood sugar blues
Medicines are of course only one part of diabetes management. Just as important is the constant monitoring of blood sugar levels. In this respect, diabetes management is much more complicated than HIV, both for individuals with the condition and for the health system.
For most people living with HIV, a viral load test every six or 12 months is sufficient to tell you if your HIV treatment is working. By contrast, people with diabetes who are taking insulin must check their blood sugar levels multiple times a day. To do this, they need glucometers - devices that measure the sugar levels in a drop of blood.
But access to glucometers is a challenge. Professor Paul Rheeder, Director of the University of Pretoria (UP) Diabetes Research Centre, tells Spotlight not everyone who needs these home testing devices is given one and those who do receive them rarely get enough test strips and lances to enable proper monitoring of their blood sugar levels.
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 one's blood sugar levels to an external device or smart phone. CGMs are becoming the international standard of care. But they are still considered unaffordable for use in South Africa's public sector and are not always fully covered by medical schemes.
Uncertain carers
While South Africa's public sector does not have the latest and most convenient blood sugar monitors and medicines in its arsenal, we are also not using the tools that we do have as well as we might.
Research from UP has found that healthcare workers are not promptly initiating or adjusting treatment based on blood sugar levels or other diabetes control measurements. Many healthcare workers, Rheeder says, are reluctant to adjust or change diabetes treatment because they lack the confidence that making the change is the right thing to do.
To address 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 that are able to 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.
Day 3 at #IDF2022
Today I'm presenting findings from our Tshwane Insulin Project, health system intervention to optimise #insulin initiation and titration in resource-limited settings. #primarycare #diabetes #type2diabetes@IntDiabetesFed @UPDiabetes @Faculty_HSUP @WorldDiabetesF pic.twitter.com/YCBXeORJlt - -- Patrick Ngassa Piotie (@PatNgassa) December 8, 2022
In a similar project in the Eastern Cape's Amathole District, MSF partnered with the Department of Health to educate and support nurses who treat diabetes.
Diabetes advocates argue that 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 provides continuous in-service training.
Time pressures
Compounding these problems are the staff shortages and resulting time pressure plaguing much of the public healthcare sector.
It takes at least 40 minutes to properly start someone on insulin and explain to them how it works, says Rheeder. But, in public sector clinics, patients typically only have 15 minutes with a healthcare worker when they are started on insulin.
While health facilities are seeing more and more diabetes patients over time, Carrihill notes that the number of healthcare workers is not increasing, resulting in less time spent with patients. Clearly, without transformative change to the healthcare system, the shortage of healthcare workers to treat patients with diabetes will only get more dire as the number of people living with diabetes balloons.
In rural areas, the situation is exacerbated by the long distances between where people live and where clinics are located. Some people with diabetes living in the rural Eastern Cape must walk up to five hours to reach a clinic, says Krisna Rodriguez.
"They go through forests, they go through rivers, and some of them even sleep over at the facility just so they can be seen the next day."
To address this challenge, MSF is piloting interventions that bring diabetes care closer to patients by creating more community medicine pick-up points, which also offer additional services like blood sugar screening.
Lack of diabetes literacy
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As the success of Mashego's TikTok video reminds us, 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), says 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 concurs: "There is nothing in the public sector, maybe a pamphlet here and there, but try and read it and see if it actually makes sense to you."
In addition, given the limited patient interaction with healthcare workers in the public sector, the Diabetes Alliance argues that we need to do a much better job of empowering people to self-manage their diabetes.
The advocates want government to develop and implement an evidence-based education campaign that is embedded in relevant local research and that targets people living with diabetes in South Africa. 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?
While much of the prognosis in this Spotlight special briefing is bleak, there are some glimmers of hope. Maybe most encouraging is the fact that diabetes advocates have been getting together and organising. As with HIV, chances are that activist pressure will be critical to bringing about sustained progress.
Last November, diabetes advocates gathered in Pretoria for the 2023 Diabetes Summit organised by the Diabetes Alliance. Their recommendations are mapped out in the Summit report, which was published last month with support from the National Department of Health.
They call on government to properly invest in the diabetes response, provide better education and support to healthcare workers treating diabetes, provide education to people with diabetes to enable them to manage their condition, and establish monitoring systems so that we can see how well our diabetes investments and interventions are working.
These are all sensible recommendations, but as always, the devil will be in the detail and the proof of the pudding will be in the eating. Getting senior government officials to nod and agree on broad policy points is one thing, but delivering concrete progress at the clinic is often 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.
That said, a good start would be simply for Minister of Health Dr Aaron Motsoaledi to acknowledge that we are facing a diabetes crisis. Once everyone is on the same page about that, the rest should be a lot easier.
"Diabetes is a looming crisis for the country, the health sector and healthcare workers," says Dr Patrick Ngassa Piotie, chairperson of the Diabetes Alliance. "There is no way we can keep doing things as we have been doing them."
We couldn't agree more.
