Overcoming cancer stigma requires policy changes and public education

Cancer-related discrimination arises from long-lasting cultural and institutional misconceptions, with significant impacts on every part of a person's quality of life and health – and Flinders University researchers say it requires coordinated policy, legal, institutional and public education responses for change to occur.

Cancer can affect much more than a person's physical health. Our research shows that a cancer diagnosis can also change how people are treated at work, when looking for a job, accessing insurance or financial support, and even within their own social networks. Surviving cancer should not mean having to fight a second battle against stigma, outdated assumptions and unfair treatment."

Dr. Andi Agbejule, lead author, radiation therapist and Cancer Care researcher with Flinders University's College of Health and Enablement

Researchers examined more than 100 studies on cancer-related discrimination – which is defined as direct and recurring experiences of enacted stigma, behaviors or unfair treatment based on an individual's cancer history, current cancer diagnosis, perceived cancer risk or cancer caregiving role.

Discrimination stemmed from misconceptions that cancer is contagious, employer concerns about productivity and costs attached to a person with cancer, rigid financial and welfare regulations, along with reduced empathy from the public, and even clinicians, towards cancers perceived as being 'self-inflicted' (such as smokers being diagnosed with cancer).

In financial and welfare systems, discrimination includes people being denied insurance because of their cancer history, facing difficulties accessing superannuation or disability entitlements, and navigating eligibility rules that did not reflect the reality that the effects of cancer can change over time. Some people continued to be treated as a financial risk even years after completing treatment.

In healthcare settings, this led to blame judgement and strained patient-clinician interactions. Other impacts of discrimination included self-isolation, concealment of diagnosis, internalized stigma, psychological distress and financial burden.

"Discrimination is not just an unpleasant experience – it can have real consequences," says Dr Agbejule. "People reported losing jobs, being overlooked for employment, struggling to access insurance, superannuation or financial support, and in some cases taking lower-paid work, using their savings or going into debt.

"It can contribute to financial hardship, including people having to use their savings or take on debt, affect how they are treated by family, friends and the wider community, influence the quality of healthcare they receive, and even make people reluctant to disclose their cancer diagnosis or seek healthcare when they need it.

"This results in social withdrawal, people hiding their cancer diagnosis, and in some cases, fear of discrimination was also linked to people delaying their healthcare."

The researchers say this points to a need for greater public and private sector education.

"Cancer-related discrimination is not only interpersonal, but also structurally embedded and intersectional," says Dr Agbejule. "Addressing cancer-related discrimination requires coordinated interventions across individual, community, organizational and policy levels.

"We need to challenge outdated assumptions about what people affected by cancer can and cannot do, while improving awareness among financial institutions employers, organisations, healthcare professionals and the broader community."

The researchers are now building on this initial research to help change cancer-related discrimination in Australia.

"The goal is to move from documenting the problem to developing practical solutions, including better education, workplace practices, policies and protections for people affected by cancer," says Dr Agbejule.

"Ultimately, people should not be defined by a cancer diagnosis. As more people live with and beyond cancer, we need to make sure our workplaces, systems and communities evolve with them."