When Salih Hendricks arrived at the Diabetes Summit in Johannesburg last week, he was due to be one of the keynote speakers, a respected advocate who has lived with type 1 diabetes for over 42 years.
But instead of taking the podium, Hendricks was forced to deliver his speech from his wheelchair in front of the stage.
The 59-year-old, who lost his leg to diabetes-related complications in 2020, could not ascend the platform because the venue was not wheelchair-accessible.
For Hendricks, it was more than a physical barrier, it was a painful reminder that people with disabilities are still being excluded from spaces that claim to support them.
“Before I start, I just want to raise something, it’s not because it wasn’t tried. I know Dr Patrick Ngassa Piotie did his best,” he told the audience. “But when you come to venues like this and realise they don’t accommodate people with disabilities, you feel that separation and exclusion.”
A journey marked by struggle and survival
Hendricks’s journey with diabetes began in 1982 when, as a teenager, he was diagnosed with diabetes insipidus, a rare disorder that causes extreme thirst and excessive urination. Four years later, it progressed to type 1 diabetes, a chronic condition requiring daily insulin and meticulous glucose management.
“I was 17 years old when I was diagnosed with type 1 diabetes. Diabetes is not easy; we suffer every day in silence. There are so many people who don’t speak out. I am here for every silent voice that cannot speak,” he said.
In 1995, Hendricks entered a period of denial, which brought devastating consequences.
“My veins burst in my eyes and I almost went blind. I had laser surgery that made me realise I needed to take better care of myself. But the complications continued,” he said.
In 2020, he underwent a leg amputation. Later, he had both eye lenses replaced and last year he suffered a stroke. Despite these hardships, Hendricks remains a tireless voice for people living with diabetes and disabilities, speaking out about stigma, healthcare access and the emotional toll of chronic illness.
A silent epidemic
According to the South African Medical Research Council (SAMRC), diabetes caused 3.4-million deaths globally in 2024, one death every nine seconds.
In South Africa, an estimated 4-million people live with diabetes, making it the second leading cause of death among women. Alarmingly, a large number of cases remain undiagnosed.
At the summit, World Health Organization (WHO) representative Shenaaz El-Halabi said diabetes lies at the heart of a growing health and economic crisis.
“Non-communicable diseases account for roughly three-quarters of all deaths, with 18-million people dying before the age of 70, most in low- and middle-income countries,” she said.
We talk about inclusion, but we are still not there. Something as simple as access to a stage becomes a reminder that we’re still excluded, even in spaces meant for us
— Salih Hendricks
She said the drivers of this epidemic are well known and largely preventable, which include tobacco use, harmful alcohol consumption, unhealthy diets and excessive intake of salt, sugar and trans fats.
The human and financial cost
Beyond the statistics, diabetes carries immense emotional and financial costs. Across South Africa, families face a silent struggle, managing insulin shortages, navigating inaccessible clinics and living with the constant fear of losing limbs or eyesight.
Deputy health minister Dr Joe Phaahla said diabetes not only affects individuals but entire families and communities.
“It can be prevented and, when diagnosed early, managed. But as Mr Hendricks’s story shows, poorly controlled diabetes can lead to kidney failure, blindness and amputations,” Phaahla added.
He emphasised that tackling diabetes requires awareness, education and reliable access to care, particularly in underserved areas where healthy food options and regular check-ups remain out of reach.
The call for home-grown research and policy
Professor Ntobeko Ntusi, president of the SAMRC, said South Africa urgently needs home-grown research and locally informed policies to respond effectively to the diabetes crisis.
“Most of the data we have focuses on people who attend clinics or hospitals. We don’t have nearly enough information about community engagement and leadership from people with lived experience,” he said.
Ntusi called for multi-sectoral collaboration and investment in South African-led clinical trials, noting that imported solutions often fail to address local challenges.
“We must foster networks and infrastructure for our own clinical research. Emerging technologies like AI and digital health tools should be used appropriately to enhance diabetes management,” he said.
South Africa’s key diabetes targets
The National Strategic Plan for Non-Communicable Diseases sets out three key targets for diabetes control:
- 90% of adults should know whether they have raised blood glucose levels;
- 60% of those diagnosed should receive interventions; and
- 50% of those on treatment should have controlled blood glucose.
However, achieving these goals remains a major challenge. Ntusi warned that cardiovascular disease (CVD) is the leading cause of disability and death among people with type 2 diabetes.
“One in three people with type 2 diabetes has established CVD, and 65% of diabetes-related deaths are due to cardiovascular disease,” he said.
He added that research must close critical gaps, from understanding genetic and cellular dynamics to identifying new subtypes of the disease and improving real-world treatment outcomes.
“There is a critical need for African research leadership. The South African government must prioritise the management of non-communicable diseases, especially diabetes, to prevent an epidemic of cardiovascular disease,” Ntusi said.
Living with diabetes, fighting for dignity
For Hendricks, the physical pain of diabetes is matched only by the emotional weight of invisibility, of being overlooked in systems that should protect and include him.
“We talk about inclusion, but we are still not there. Something as simple as access to a stage becomes a reminder that we’re still excluded, even in spaces meant for us,” he said.
As the summit concluded, his message lingered, a poignant reminder that addressing diabetes is not only about medical care and statistics, but also about dignity, accessibility and compassion.
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