The prevalence of diabetes mellitus (DM) in South Africa is estimated at 7.2% among adults aged 20–79 years, equating to approximately 2.3 million individuals living with the condition. Notably, up to 70% of cases in South Africa remain undiagnosed.¹ Given the substantial burden of DM and the high proportion of undiagnosed cases in South Africa, the meaningful inclusion of individuals with a lived experience of DM is essential to inform responsive, patient-centred approaches and to drive transformation within healthcare systems. The World Health Organization emphasises the role of individuals with lived experience who have firsthand knowledge of a social issue, health condition or disability, in forming patient-centred approaches and transformation within healthcare systems.²

The Diabetes Alliance is a non-profit organisation with a mission to unite stakeholders within South Africa and globally to reduce the burden of DM through advocacy, education, community engagement and collaborative partnerships. On 11–13 November 2025, the Diabetes Alliance convened the third Diabetes Summit at the Radisson Hotel & Convention Centre in Johannesburg. The theme of the Summit was ‘Innovate for Impact: Transforming the Future of Diabetes in South Africa’, which was explored through various panel discussions and tracks. In the words of the Chairperson of the Diabetes Alliance, Dr Patrick Ngassa Piotie: ‘Innovation is not only about technology, but also about transforming lives. It is about ensuring that every person with DM, regardless of where they live or what they earn, has access to quality care, education, and hope’.

This report will focus on the two lived-experience tracks presented during the Diabetes Summit.

The South African Depression and Anxiety Group (SADAG) facilitated the first lived experience track on the first day of the Diabetes Summit. The group has a 30-year track record in providing support to South Africans struggling with their mental health and has expanded its services to support people living with non-communicable diseases (NCDs), including DM.

The following points were raised.

The second workshop focused on Advocacy for Prevention and Care – Building Momentum for Policy Change. The workshop was hosted by Healthy Living Alliance (HEALA). Healthy Living Alliance is a South African coalition of civil society organisations that work together with the government and other stakeholders to promote wellness and improve public health by advocating for equitable access to affordable, nutritious food and healthier food environments for all (including a focus on addressing obesity in the country).

This session explored the impact of an unaffordable and unhealthy food environment on the onset and perpetuation of NCDs. Globally and in South Africa, obesity is a major risk factor for NCDs, especially DM and is increasingly framed as a chronic, complex and recurring disease.¹⁶ However, despite this recognition, it remains inadequately prioritised within policy and health systems responses. The publication of South Africa’s first national clinical practice guideline for obesity management in 2025 represents a critical step forward,¹⁷ but coordinated, ‘whole of government’ and ‘whole of society’ action is still required to address obesity holistically.

Delegates agreed that in addition to the circumstances and context in which they live, individuals living with DM face significant challenges related to the health system and service delivery factors, directly impacting compliance to treatment, accessibility to treatment and quality of care.

Contrary to the stipulations of the Integrated Clinical Services Management Model,¹⁸ the arrangement and functioning of many health facilities continue to promote vertically based, fragmented care. Health system weaknesses such as long waiting times, shortage of skilled healthcare providers in DM care, frequent occurrence of shortage of DM drugs and consumables, poor monitoring of both DM and early signs of DM complications, coupled with limited patient–healthcare provider consultation time, compromise the quality of care rendered.

Literature shows that time limits during consultations with healthcare providers may influence the patient’s understanding of DM and hinder patient treatment compliance. Additionally, the unavailability of consumables and medication leads to poor medication adherence and glycaemic control, negatively impacting health outcomes while increasing the risk of developing complications.¹⁹

Limited DM-specific knowledge and expertise among healthcare providers may affect individuals’ self-management, leading to poor adherence and diabetes control. This highlights the urgency for enhanced training and capacity development among all levels of healthcare providers. While existing, the optimal utilisation of Standard Treatment Guidelines remains suboptimal, and the adoption of person- and patient-centred approaches for NCDs is not prioritised. These gaps appear to perpetuate a practice among healthcare workers (HCWs) to stigmatise DM and other NCDs as personal failures by patients that they must manage.

Based on the session proceedings, workable solutions going forward may include the following.

The lived-experience tracks of the 2025 Diabetes Summit underscored the need to reframe DM care in South Africa through a more holistic, people-centred lens. By centring lived experience, strengthening peer support, and advancing advocacy, stakeholders highlighted pathways to more responsive and equitable care.

These discussions reinforced the importance of a whole-of-society approach, where communities, healthcare providers, civil society and policymakers work together to address the complex and interrelated drivers of DM – and what is required to timeously diagnose, treat and refer people living with DM.

Elevating the voices of people living with DM is not only a matter of inclusion – it is essential for designing effective interventions, shaping policy and ultimately improving health outcomes.