This is a big day for people with Type 1 diabetes in South Africa! The national Type 1 diabetes burden study is now live.
The University of Pretoria (UP), in partnership with other South African universities, professional associations and the diabetes community, has launched the country’s first nationwide study to measure the burden of Type 1 diabetes (T1D).
What is the South Africa Type 1 diabetes burden study?
The South Africa Type 1 Diabetes Burden Study, supported by the Life for a Child Program of Diabetes Australia, seeks to address a long-standing data gap. It will do this by generating national estimates of how many people are living with T1D in South Africa, and where and how they are accessing care.
The idea for this study arose from a glaring data gap:
Dr Patrick Ngassa Piotie
South Africa has no reliable information on the number of people living with Type 1 diabetes.
“Estimates used in national and global reports are extrapolated from studies conducted in other countries. This lack of local data severely hampers our ability to plan, allocate resources, and advocate for better care,” says Dr Patrick Ngassa Piotie. He is the Senior Programme Manager at the University of Pretoria Diabetes Research Centre and Principal Investigator of the study.
Background to the study
Type 2 diabetes is widely recognised as a growing public health crisis in South Africa. Type 1 diabetes – an autoimmune condition that requires lifelong insulin therapy – is often overlooked. Like Type 2 diabetes, T1D can lead to serious complications such as kidney failure, blindness and cardiovascular disease. Most people with T1D are diagnosed in childhood or adolescence. As a result, the consequences of incorrect diagnosis or inadequate treatment can be even more severe. This includes affecting growth, disrupting education, and limiting employment opportunities. In some cases, it can even lead to premature death due to misdiagnosis or lack of access to care.
Currently, no national data exists on how many people are living with T1D in South Africa. Or how their condition is being managed. Existing estimates are extrapolated from other countries (think about that for a moment!) This limits the ability of the national government, clinicians and advocacy organisations to plan, allocate resources or design effective interventions.
A national registry for T1D
“For years, efforts to establish a national registry have been discussed in silos by researchers, clinicians and advocacy groups,” Dr Piotie said. “This is the first time we are coming together in a coordinated, national study. It unites public and private sectors, academic institutions, professional societies, and people with lived experience. The idea is based on a simple but powerful premise: You can’t improve what you can’t measure.”
The project is led by UP’s Diabetes Research Centre in partnership with the University of Cape Town (UCT), University of the Free State (UFS), University of the Witwatersrand (Wits), Stellenbosch University (SU), and the University of KwaZulu-Natal (UKZN). It is supported by the Society for Endocrinology, Metabolism and Diabetes of South Africa (SEMDSA), the Paediatric and Adolescent Endocrinology and Diabetes Society of South Africa (PAEDS-SA), nonprofits focused on empowering people with diabetes, the Sweet Life Diabetes Community, and the Diabetes Alliance South Africa.
Why participation and inclusion are important
The inclusion of people with lived experience has been central to the study from its inception.
The fact that people with Type 1 diabetes have been included right from the start – that lived experience is a core part of this project – is so powerful. Finally, we can start building a map of Type 1 diabetes in South Africa, together.
Bridget McNulty
From a provincial, national and institutional perspective, the study is a first. “This diabetes burden initiative will produce much-needed knowledge to allocate resources more effectively and raise public awareness around Type 1 diabetes in South Africa,” said Dr Lebohang Pitso, Head of Endocrinology at UFS and Universitas Academic Hospital.
“For us at the University of the Free State and the Free State society at large, it will be the first study of its kind. The co-operation with other institutions will boost the positive effect it is projected to have on the lives of individuals with Type 1 diabetes.”
The study is designed to be inclusive, comprehensive and policy-relevant. It captures data from both the public and private sectors, and incorporates the voices of those living with T1D.
Why this study matters
The study directly supports South Africa’s National Strategic Plan for the Prevention and Control of Non-Communicable Diseases (2022–2027). It also supports the World Health Organization’s call for improved diabetes surveillance.
Once completed, the data will provide a foundation for establishing South Africa’s first national Type 1 diabetes registry. The findings will also help guide the procurement of insulin and glucose monitoring tools. And inform healthcare planning, while ensuring stronger policy inclusion for T1D across all levels of the health system.
Above all, Dr Piotie pointed out, the study marks a turning point for the thousands of South Africans living with T1D.
This is about more than data. Once established, the registry will give us a national picture of T1D for the first time…
Dr Patrick Ngassa Piotie
Most importantly, it will give visibility to a community that has long felt invisible.
How to participate
Participation is open to anyone in South Africa living with T1D, including parents and guardians of children with T1D.
The online survey is written in clear, accessible language. It takes about 20 minutes to complete, so it’s easy for individuals to participate from the comfort of their homes. Simply click here:
What to read next?
Understanding the answers to our Type 1 Diabetes Registry survey: Here are their answers…
What is the future cost of diabetes in South Africa: Let’s look at diabetes in South Africa – the big picture.
What I wish I’d known about diabetes and stigma: What does diabetes stigma look like in real life? We ask Sane Mazibuko to share the battles of stigma, self criticism and reflection we all
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