Scientists from 18 countries join forces to put end to 'pervasive, global problem' of diabetes stigma and discrimination

Through a series of reviews of more than 100 research papers and a three-round Delphi questionnaire, a multidisciplinary panel of 51 scientists from 18 countries have reached consensus on a pledge to end the suffering diabetes patients undergo when stigmatized or discriminated against.

The scientists have published their findings in the journal The Lancet Diabetes & Endocrinology.

In the study titled "Bringing an end to stigma and discrimination: An international consensus statement on evidence and recommendations," the scientists draw recommendations, make pledges, and lay out a roadmap to eradicate the harmful effects of the unfair and negative beliefs and practices many people with diabetes suffer from.

Leaning on cross-sectional and quantitative studies involving hundreds of respondents and multiple rounds of questionnaires, the authors find diabetes stigma to have become "a pervasive, global problem" with around four in five adults with type 1 or type 2 diabetes experiencing some form of sigma or discrimination.

There are 537 million adults, ages 20–79, currently living with diabetes, and the number is expected to skyrocket to 643 million by 2030 and 783 million by 2045, according to the IDF Diabetes Atlas, an authoritative source on the prevalence of the disease.

With nearly 1 in 10 of the world's population currently afflicted with diabetes and the stigma associated with the disease turning into a global problem, the scientists adopt a global approach to accelerate an end to the stigma associated with the health problem.

The study, the authors say, brings together "an international multidisciplinary expert panel (n=51 members, from 18 countries)" who conduct rapid reviews of the literature and take part in a three-round Delphi survey process.

They find diabetes stigma to be "driven primarily by blame, perceptions of burden or sickness, invisibility, and fear or disgust," noting that patients are subject to "unfair and prejudicial treatment."

Despite the near global nature of their research, the authors are aware of the limitations of their study as most of the expert panel comprising 51 members come from 18 high income countries, making it hard to generalize the findings unless examined within different local contexts.

"We acknowledge the inherent potential for selection bias in the international consensus, including the scarcity of representation of experts from low-income and middle-income countries, with rarer types of diabetes, or from indigenous, migrant, and other minority populations. The relevance of the evidence and recommendations need to be examined within local contexts," they write.

However, the authors highlight that the pledge to close the diabetes stigma chapter has been taken up "by organizations and individuals in 100 countries, 58% of which are low-income and middle-income countries, suggesting the pledge is relevant and being embraced across the world."

The authors show what they call "convincing evidence that diabetes stigma and discrimination are ubiquitous, insidious, pervasive, counterproductive and can be harmful to both physical and mental health."

Dr. Hamzah Tareq Al Zubaidi, University of Sharjah's associate professor and a co-author, says the study is to attract the world's attention to "negative and unfair treatment of people with diabetes, simply because they have diabetes."

"For example, people can sometimes assume that people with diabetes are lazy or blame them for bringing this condition on themselves, and, as a result, they discriminate against them. This discrimination can happen in various areas of life, like marriage, education, and employment.

"Our research looked at different types of diabetes stigma and discrimination; what drives diabetes stigma, and how it affects people. What we discovered was alarming. Diabetes stigma comes from many places—health care providers, family, and even strangers on social media.

"It is essential to understand that the stigma of diabetes does not just hurt people's feelings; it may also harm their health and well-being. It can make people hide their condition, skip medications, or avoid seeking help. This can lead to worse health outcomes."

The international investigation into diabetes stigma and how to grabble with it is led by Prof. Jane Speight, a world-renowned scholar from the Australian Center for Behavioral Research in Diabetes. Prof. Speight and her 50 co-authors find there is almost no protection for people with diabetes to guard against what they dub as "drivers and facilitators of diabetes stigma."

The study reports that laws and policies often do not protect diabetics from the host of negative and often unfair beliefs and practices societies have about the disease.

"Diabetes stigma and discrimination are harmful, unacceptable, unethical, and counterproductive. Collective leadership is needed to proactively challenge, and bring an end to, diabetes stigma and discrimination," they write.

Diabetes stigma, the authors say, like all health-related stigma, is "driven primarily by blame, fear, and disgust arising from negative stereotypes and misinformation" which is spurred and facilitated "by media messaging and public discourse, health organizations and health professionals, cultural and social norms, policy, and law.

"This facilitation could be confounded by other health-related stigma, such as being due to obesity or mental illness. Stigma can also vary between and within communities, reflecting localized health, sociohistorical, cultural or religious beliefs (or a combination)."

Asked about the project's significance, Dr. Alzubaidi pointed to "its potential to improve the lives of millions of people with diabetes by combating the stigma, promoting awareness, and advocating for change at individual, societal, and systemic levels."

The authors of this international project draw attention to the negative and harmful aspects the stigma of diabetes can cause patients. The stigma, they show, does not just hurt people's feelings but can negatively influence their well-being to the extent that they start skipping medication or seeking professional help.

"People who experience diabetes stigma have a lower general quality of life or life satisfaction and greater negative effect of diabetes on quality of life than people with diabetes who do not experience this stigma," they note.

The multidisciplinary panel of 51 experts conducting the study apply the experience they have gathered as diabetes specialists and the knowledge they collect from their review of related literature to shed light on the prevalence and extent of diabetes stigma and discrimination, its key drivers and facilitators as well as its consequences and interventions.

The scientists say they achieve unanimous consensus "on a pledge to end diabetes stigma and recommendation" on how to do so. Dr. Alzubaidi says the study has come up with conclusive evidence that diabetes stigma is a global health issue hence the scientists' agreement on a vow to end it.

"This pledge promises to take action—to challenge unfair treatment, educate ourselves and others, and create a more supportive environment for people with diabetes," Dr. Alzubaidi affirms. "It is a call to collective leadership, urging everyone to work together to make a positive change. By working together, we can create a world where everyone is treated with respect and dignity, regardless of their health condition."

While the authors acknowledge the importance of more prospective research to further unravel the diabetes stigma problem, they entertain no doubt that the health issue is "ubiquitous, insidious, pervasive, counterproductive and can be harmful to both physical and mental health."

Although they admit they face an uphill task in their endeavor, they underscore the urgency and importance bringing an end to the stigma and feel confident of success. They call for "multifaceted, long-term solutions, involving international collaboration and collective leadership from all sectors of the community.

"Such action will require all of us to challenge our own biases and to recognize how we might be contributing to, or facilitating, diabetes stigma and discrimination."

In conclusion, the authors extend an open invitation to individuals and organizations across the world to join them in endorsing and honoring their pledge. "To implement the pledge, meaningful community engagement with people with diabetes is necessary to identify localized stigmatizing practices … and plan, develop and implement research, initiatives, and policies to address diabetes stigma."