On World Diabetes Day 2023, a unique event was held to kickstart the collective commitment and action needed to stop the harmful effects of diabetes stigma across the world
By Dr Uffe Søholm
Diabetes stigma refers to the negative social judgements, stereotypes, and biases about diabetes that affect people with diabetes all over the world. In fact, it affects around 4 in 5 people with diabetes. Diabetes stigma can lead to being treated differently. This is known as discrimination. Up to 1 in 3 people with diabetes have been discriminated against due to their diabetes.
Since August 2023, more than 2,300 individuals and 280 organizations, in 100 countries, have taken a Pledge to end diabetes stigma. You can read the Pledge here.
On 14th November every year, we celebrate World Diabetes Day. It marks the birthday of Sir Frederick Banting, who discovered insulin in 1922 with his colleague, Charles Best. So, World Diabetes Day was the perfect day to launch the Pledge. The idea was to mark the start of the end of diabetes stigma and its harmful impacts.
The launch was held in Melbourne, and broadcast live across the world. It was co-hosted by health journalist, Dr Norman Swan AM, and diabetes advocate Renza Scibilia. A key focus was discussions involving people living with diabetes in Melbourne, across Australia, and the world. Everyone shared their experiences and their visions for a world would look like without diabetes stigma.
The first panel focused on the Pledge. It is based on an international consensus achieved by 51 experts across the world. Three of those experts were on the stage. Renza discussed that diabetes stigma has been discussed in the community for decades. Ending diabetes stigma will take all of us. This is why it is so important that it is led by, and includes, the whole community. Professor Jane Speight said that the consensus sums up the evidence of the harmful impacts of diabetes stigma. It is published in The Lancet Diabetes & Endocrinology. Matthew Garza (the diaTribe Foundation) said the Pledge translates the evidence into 7 actionable commitments. If we all live the pledge, it will help end diabetes stigma.
Next up, four young adults with type 1 diabetes in Melbourne – Daniel, Darcy, Liana, Tara – took the floor. They shared multiple sources, experiences and impacts of diabetes stigma. These included severe delays in getting a driving licence and being treated differently when applying for jobs. They showed the power of the words we use in diabetes, which can show bias or show we care. They are optimistic that diabetes stigma will reduce with education, representation, involving and listening to people with lived experience of diabetes.
A key theme of the event was the complexity of diabetes stigma among First Nations people. Chris Lee is a member of the expert panel. He was previously the Manager of Aboriginal and Torres Strait Islander Engagement at Diabetes Australia. He stressed the blame and judgement that Indigenous people with diabetes experience. He said that all work about Indigenous people with diabetes needs to involve them directly, i.e. with true co-design and meaningful engagement.
Turning to diabetes stigma across the world, several advocates (from #dedoc) joined via the big screen. They shared personal experiences and discussed initiatives in their countries. From Indonesia, Anita shared the experiences of women with diabetes in Indonesia. From the USA, Chelcie discussed diabetes stigma in the workplace. From South Africa, Helga, founder of Ninety9.zero, discussed the trauma she experienced at diagnosis, and that she hid that from others for many years. From India, Jazz, founder and director of The Diabesties Foundation, emphasized the need for everyone to call out diabetes stigma. She also proposed putting stigma on the agenda at the time of diagnosis to help prepare people with diabetes for some of the issues they may face. This is because diabetes stigma will not disappear overnight.
A brief video showed diabetes campaigns and media headlines. Many focus on fear or blame. Renza and Norman discussed the role of the media and diabetes organisations in shaping the narrative around diabetes. Norman said the media has a long way to go. He also asserted that the media takes its lead from diabetes organisations that publish those campaigns. So, we need to stop those campaigns, as they give the media and the community permission to blame and shame.
Finally, Norman led a panel including leaders of diabetes organisations: Gordon Bunyan, Director of Diabetes Australia; Glen Noonan, CEO of Diabetes Victoria; and Professor Anthony Russell, President of the Australian Diabetes Society. They gave their perspectives on where time, effort and money are needed to end diabetes stigma. Education, advocacy, and research were central themes. Professor Jane Speight emphasised that we need to change the narrative about diabetes. We need to challenge fear-based messaging, blame and shame. We also need research to show how to produce effective diabetes campaigns that don’t facilitate stigma. This needs to be prioritised by diabetes organisations and research funding bodies. Matthew Garza shared that we have big opportunities to learn from other communities where stigma has been experienced, such as HIV/AIDS. The way that the media portrays diabetes is important. At this point, we need the community to be assertive, which can be really powerful. Renza asserted that the community needs allies. Gordon said that the more we talk about it, the more likely it will be that prominent people will come forward in support. We all need to play our part to bring an end to diabetes stigma and discrimination.
Read more about the Pledge to #EndDiabetesStigma here.
Watch the full recording of the event here.
Take the pledge here.
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