Objective
Our objective is to create a clear vision for a world without stigma and discrimination against diabetes. This includes figuring out what needs to be done, setting specific goals, and determining how we can measure our progress. We will also identify the partnerships needed to make these changes happen. Our plan is to enable everyone involved to:
- share their experiences and thoughts on why diabetes stigma continues
- reflect on their roles and find ways they can contribute to change, as well as potential partners they can work with
- discuss the challenges they face in following through on the Pledge
- highlight current efforts and successful strategies in areas like advocacy, education, healthcare, media, policy, and research
- identify how we can measure change and its impact, which is crucial for showing progress and guiding future efforts
- determine and prioritize specific actions for individuals, communities, organizations, and countries, including those that require collaboration and investment from multiple groups.
Background Rationale
People with diabetes often face stigma, which means they deal with negative judgments, stereotypes, and prejudice from others. This can seriously impact their emotional and physical health, make self-care difficult, limit their access to quality healthcare, and reduce their social and job opportunities.
To help end this stigma and discrimination, an international group of 51 experts, including 30% who have diabetes themselves, came together from 18 countries. They agreed on 25 key points about the issue and 24 recommendations for action. All 49 key points were based on the evidence available to date. They found that stigma often comes from blame, views of diabetes as a burden or illness, a lack of understanding, and feelings of fear or disgust. Alarmingly, about 80% of adults with diabetes experience stigma, and 20% face discrimination, such as unfair treatment in healthcare, education, or jobs. Both stigma and unfair treatment are harmful, unacceptable, and counterproductive.
To tackle this issue, we need strong leadership and a united effort to challenge and eliminate diabetes stigma. As a result, the group of experts created a Pledge to end diabetes stigma and discrimination (you can find it here: https://enddiabetesstigma.org).
Since August 2023, over 300 organizations and more than 2,850 individuals and more than 330 organizations in 107 countries have signed this Pledge. The Pledge is a comprehensive commitment that requires everyone to work together and take action to end diabetes stigma and discrimination. We now need to bring together individuals and organizations to support each other in their collective leadership to achieve collection action.
Description of Project
People with diabetes often face stigma, which means they deal with negative social attitudes, stereotypes, and prejudice. This stigma can harm their emotional and physical health, make it harder for them to take care of their diabetes. Stigma due to diabetes can also lead to changes in or limitations in their access to quality healthcare, and reduce their social and job opportunities. The latter is known as discrimination.
In 2023, 51 experts from around the world came together to agree on how to tackle this stigma and discrimination. They created a Pledge that has already been supported by individuals and organizations in over 100 countries.
In November 2025, we will hold a two-day Global Summit. It will provide a crucial opportunity to maintain momentum and action following the Pledge. Attendees will include representatives from charities, healthcare organizations, educational institutions, and the pharmaceutical industry, as well as people living with diabetes, their families, educators, health professionals, journalists, policymakers, and researchers.
At the Summit, we will turn the Pledge into specific actions with clear timelines. We will outline what needs to be done, how we can measure our progress, and what partnerships are necessary to make this happen. Participants will also share stories about their recent efforts and discuss the challenges and opportunities they face. Our goal is to create a world free from diabetes stigma and discrimination.
Anticipated Outcome
We will establish a clear vision of a world without diabetes stigma and discrimination, define what needs to be done (goals, actions and commitments), what needs to be measured to demonstrate progress (indicators), and what partnerships are needed to achieve this. We will collect case studies on what is working in various parts of the world and among various types of stakeholders, e.g. among researchers, among health professionals, among the media. We will also identify remaining challenges, and opportunities for collaboration and further action.
Relevance to T1D
About 80% of people with type 1 diabetes have faced stigma because of their condition. This stigma can negatively impact their emotional and physical health, making it harder for them to manage their diabetes effectively. It can also limit their access to quality healthcare and reduce their opportunities in social and professional settings. The same issues apply to people with other types of diabetes as well.
In some places, the stigma around type 1 diabetes makes it difficult to talk openly about basic human rights. For example, Jazz Sethi noted in the BMJ that type 1 diabetes is sometimes seen as a "stain" on society, leading to quiet whispers and uncomfortable glances that can be just as challenging as managing the disease itself.
The consequences of diabetes stigma can be severe. In certain cultures, there may be pressure to hide diabetes management, such as avoiding insulin injections or glucose monitoring in public. Some people might feel forced to accept harmful beliefs that go against effective diabetes care. In extreme cases, children with type 1 diabetes could face abandonment, neglect, or even life-threatening situations if their insulin treatment is stopped. Adults with diabetes might be wrongly viewed as unsuitable for marriage or jobs.
This stigma is often driven by inaccurate ideas, e.g. blame that the person brought their condition on themselves; the perception of diabetes as a burden; a lack of understanding because it is rare or rarely seen; and feelings of fear or disgust. Addressing these myths and misconceptions requires education and changing the way we talk about and see all types of diabetes. We cannot bring an end to the stigma surrounding type 1 diabetes without also addressing stigma related to other types of diabetes. That is why this event will focus on bringing an end to the stigma and discrimination experienced by people with all types of diabetes.