Although diabetes is the second leading cause of death in SA after TB, there is no clear picture of how many people have it or are receiving care, leaving the health system ill-equipped to handle a growing crisis.
While surveys have shed some light on diabetes prevalence, inconsistency in survey approaches and an over-reliance on self-reporting measures – as opposed to objective blood-based biomarkers – make it difficult to determine how many people actually have the disease, writes Catherine Tomlinson in a special Spotlight report, published in News24.
She writes:
The most widely cited figure is 4.2m – the number of South Africans estimated by the International Diabetes Federation (IDF) to have diabetes in 2021.
Yet, this estimate is not drawn from data generated in South Africa, but inferred from data from Tanzania, which has a very different health profile.
While surveys have shed some light on diabetes prevalence in this country, inconsistency in survey approaches and an over-reliance on self-reporting measures, as opposed to objective blood-based biomarkers, make it difficult to determine how many people actually have the disease.
Percept, a consulting firm in Cape Town, has produced alternative estimates derived from local data, including available population surveys and medical schemes data, and estimates that just under 5.6m South Africans had diabetes in 2019, 80% of whom accessed public sector healthcare.
For comparison, around 7.8m had HIV in 2023, according to Tembisa, the leading mathematical model of HIV in South Africa.
Percept forecasts that, like many other countries, South Africa’s diabetes cases will rise to an estimated 8.75m in 2040.
While the government has committed to scale-up interventions to tackle diabetes in its 2022-2027 National Strategic Plan (NSP) on Non-Communicable Diseases (NCDs), little progress has been made in establishing the monitoring and surveillance systems telling us whether the requirements are being met.
"People are dying of something nobody should ever have to die from, and we don't know where they are, we don't know if they're getting care, and we don't know if they're getting medicine,” Sweet Life’s Bridget McNulty told Spotlight.
Sweet Life is a community of diabetics focusing on empowering people who have the condition.
What types of data do we need?
First, we need up-to-date data on how many people have or are at risk of developing diabetes. This could be collected through large, regularly repeated surveys that are comparable over time. SA has such an HIV survey, run roughly every five years.
Bilqees Sayed, deputy director at the National Department of Health, told participants at a Diabetes Summit last year that South Africa was considering implementing the WHO STEPwise approach to gather information on NCD risk factors.
This includes, among other elements, a household survey in which blood samples are collected through a finger prick to measure participants’ blood glucose levels.
The National Department of Health, however, did not respond to questions on its plans for implementing such surveys.
Second, South Africa needs better data to tell us how many people with diabetes are dying, and from what (people with uncontrolled diabetes may die from heart disease, stroke, or other diabetes-related causes).
Statistics South Africa has published mortality data generated from cause of death notifications up to 2018, showing a worrying rise in deaths from diabetes over the past decade. However, there is concern that how that data are captured in death notifications fails to properly reflect the extent to which diabetes contributes to deaths.
As with HIV, diabetes might, in some cases, be a contributing factor, but not be noted on a death certificate.
And, third, South Africa needs better routinely captured data to understand people's journey through the healthcare system. Who is at risk of diabetes? Who has been screened? Who has been diagnosed? Who has been linked to care and how are they doing?
Outside the Western Cape, where the provincial health department has developed digital systems for tracking people's health data, very little such routine monitoring of diabetes is done.
Why do we know so little?
Much of the country's health systems focus, political will, and investment over the past two decades has been directed towards HIV and TB – understandably. There was a real, urgent need to respond to the dual crises, and international donors were also keen to provide funding to combat these diseases.
But while SA has improved care, and strengthened monitoring for HIV and TB, this has rarely trickled down to support other disease responses.
Consider how patient folders are managed. At primary care clinics for HIV or TB, patients’ folders go into a special pile for facility-based data capturers to upload relevant HIV and TB information into a national digital system.
These efforts have provided rich data on how many people have been diagnosed with HIV and/or TB, where they are, who they are, whether they are on treatment, and how they are doing.
But if a patient is seen at a clinic for diabetes, their data typically never moves beyond the paper-based folder in which it is recorded. While this should at the very least allow for the continuity of care when they repeatedly visit the same facility, patient folder management systems in primary clinics are notoriously wonky, with folders often vanishing or patient confidentiality being put at risk.
Another difference between HIV and TB and diabetes is the use of registers: primary clinics have long used paper-based registers (with carbon copy pages that can be removed for monitoring purposes) to keep track of patients diagnosed and/or treated for HIV and TB.
While the NDoH 2014 guidelines for primary care level management of Type 2 diabetes state that clinics should maintain a register of people with diabetes to allow for patient recall, this remains unimplemented (except in a few clinics that took the initiative to do this on their own).
Without digitised data on the interactions of people with diabetes with the health system, or clinic-based registers, the only way to identify them at most facilities is to do a full audit of all patient folders there. These time-consuming audits have been done in some locations for academic purposes, with disheartening results.
“In some facilities, the filing system had completely collapsed,” Dr Patrick Ngassa Piotie, chairperson of the Diabetes Alliance and co-founder of the University of Pretoria’s Diabetes Research Centre, told Spotlight.
“As a result, every time a patient with diabetes comes to (the clinic), for a visit, they receive a new blank sheet.”
The lack of systems to track and recall these patients risks lives. During the height of the pandemic, the absence of such systems hamstrung efforts by NGOs and the government to target messaging and interventions at this group.
Diabetics face a higher risk of severe-illness or death from Covid-19 than people without the condition.
Western Cape way ahead
Over the past two decades, the Western Cape health department has developed a Provincial Health Data Centre (PHDC) that collates data from several sources – facility visits, hospitalisation, diagnostic lab results, and the dispensing of medication. Apart from enabling the province to better track health outcomes at provincial level, it allows for continuity of care.
Dr Muzzammil Ismail said provincial health providers can see when a person was diagnosed with diabetes (from lab results or medicine dispensing data), what medicines they were given, how controlled their diabetes is over time, and whether they have been hospitalised with a diabetes-related complication, all using an innovative online tool.
Whle the provincial data system enables monitoring and research, its primary purpose is “to support clinical decision-making for how you actually care for patients”.
Can the NDoH establish similar systems?
The Western Cape's system has been developed using open-source computer programmes that could be adopted by other provinces but nationally, the National Department of Health has opted to develop its own systems instead.
President Cyril Ramaphosa announced in February 2023 that “using the capabilities of the electronic vaccination record system we developed for Covid-19, the Department of Health will introduce an Electronic Health Record solution to improve management of records”.
Similarly to the Western Cape system, the EHR system will link patient data under a unique identifier or patient registration system.
However, the timeline for implementation of this, touted as a necessary step toward National Health Insurance, is unclear.
How well the department can implement this system and how long this will take remains to be seen. The availability of relevant digital skills and infrastructure across the country is limited and, apart from the Western Cape, the track record of the past two decades is not inspiring.
Diabetes and NCD advocates argue that when the Electronic Health Record System is implemented, it should not prioritise monitoring of HIV and TB over other conditions.
Sandhya Singh, NCD policy activist and a former director in the NCD cluster at the National Department of Health, said: “The electronic health record system should be implemented urgently to benefit all people, irrespective of their condition.
“There shouldn't be any phasing in of any condition, or prioritisation of one above others.”
Another area of uncertainty is the stalled establishment of the National Public Health Institutes of South Africa (NAPHISA).
The vision with NAPHISA was to create a new entity tasked with helping the country get to grips with growing health threats like diabetes.
Currently, the National Institute of Communicable Diseases (NICD), in the National Health Laboratory Services (NHLS), is, to some degree, also supporting the monitoring of non-communicable diseases (for example, the Cancer Registry). However, it is anticipated that monitoring of NCDs will fall under the domain of NAPHISA once it is established.
But while the legislation to establish NAPHISA was passed in 2020, the entity has not yet been established, nor are there any indications it will happen any time soon.
What can be done?
While we wait for the new Electronic Health Record system to be developed and for NAPHISA to be established, we can set other balls rolling.
We could act on the relevant WHO recommendations.
As noted above, Sayed told participants at the 2023 Diabetes Summit that the National Department of Health is considering implementing the WHO's STEPwise approach, which would include a household survey component measuring diabetes risk and collecting blood glucose measurements.
In addition, Mzi Gcukumana, senior communications manager at the NHLS, told Spotlight the health department is working with the WHO to roll out the integrated disease surveillance system (IDSR), which includes reporting new cases of diabetes.
These are positive signs, but as with any such promises, the proof of the pudding will be in the eating.
Second, the health department could include more diabetes indicators in its existing digital data systems – most notably in the District Health Information System (DHIS).
The DHIS collects data on multiple indicators, including for example cervical cancer screenings and maternal and child health outcomes, from public health facilities countrywide. However, efforts to include diabetes indicators on the DHIS have had limited success.
Sayed told participants at the 2023 Diabetes Summit that “we do not have an integrated electronic system for NCD surveillance at national level … we rely on the DHIS, which is not appropriate in terms of the number of data elements and indicators that are being collected”.
While the DHIS should ideally monitor indicators for secondary complications related to diabetes, Sayed noted, “unfortunately when these are proposed to our M&E (monitoring and evaluation) people and presented to provinces, we are told these indicators and data elements cannot be included because we do not have a register which collects these data”.
Third, we could establish a national diabetes registry.
To do this, we’d have to calculate what types of data must be collected at what levels of care. TB registries, for example, collate data from facilities to enable recall of patients (this approach was recommended in the Department of Health’s 2014 guidelines for diabetes, but never implemented).
Alternatively, the National Cancer Registry is collated from laboratory data.
Gcukumana told Spotlight that if a diabetes registry were created, it’s primary purpose “should be to support improvement in the quality of care and adherence to national and international treatment guidelines”, and would require collating all lab and patient data: blood glucose, HbA1c, creatinine, urine albumin, age, weight, height, BP, prescribed medication and eye test results.
Diabetes advocates, however, said the health department was resistant to creating a diabetes-specific registry due to concerns that this would further entrench the siloed approach to healthcare that arose in response to HIV and TB, from which the department was now trying to move away.
In the absence of a national registry, the Diabetes Alliance, the University of Pretoria, and partners have begun exploring opportunities to create a Type 1 diabetes registry through field research, as well as the creation of an online platform allowing people to submit their own information to be counted on the registry.
Such a patient-led cancer registry was recently launched in South Africa. (While 90% of people with diabetes have Type 2 diabetes, around 10% of people with diabetes have Type 1. Type 1 diabetes, which typically appears in children, is generally managed by specialists at hospitals).
Last, we can make better use of the extensive laboratory infrastructure at the NHLS. People with diabetes receiving care through the public sector should, at minimum, have an annual HbA1c blood test.
The results show how well controlled their condition is. The NHLS houses all of the lab data for the estimated 80% of the population accessing diabetes care through the public sector.
Gcukumana said the NHLS had HbA1c and creatinine data from tests performed in the public sector, that some had already been analysed and published, while other analyses were ongoing.
The seeds are thus there, but such work-ups and collation into useful statistics should become at least as common as viral load tests and data for HIV.
Most experts agree diabetes rates will only increase in the coming decades.
Simultaneously, with the development of new classes of diabetes medicines, like GLP-1 agonists (semaglutide etc), we have new options for treating diabetes and weight problems early, and potentially preventing it.
South Africa has adopted several good targets to improve diabetes care and outcomes under the relevant strategic plan. But we lack baseline measurements of our performance against those targets.
The pockets of data from academic research show that even where people are being diagnosed and linked to care, they often fare poorly, experiencing poorly controlled blood sugar levels and debilitating complications.
*This special briefing is part of a series by Spotlight – health journalism in the public interest.
See more from MedicalBrief archives:
Poor management of ballooning diabetes in SA
Concern as diabetes deaths double in past decade
At least 60% of Africa's diabetes goes undiagnosed – global report
High prevalence of prediabetes in HIV positive people – SA review
SA Diabetes Alliance calls for urgent education programme