Posted on 28th June 2024 by Charlotte Ridler

Tackling Inequalities in LGBTQIA+ Cancer Care with Dr Alison Berner

Why does cancer disproportionately affect LGBTQIA+ people? We spoke to Dr Alison Berner this Pride Month to explore the unique inequalities the community faces and hear about her latest research addressing these disparities.

Cancer does not affect everyone equally. Factors such as a person’s socioeconomic status, ethnic background, sex, disabilities and sexual orientation can all influence the likelihood of developing cancer and receiving successful diagnosis and care. To ensure everyone benefits from advances in cancer research, we need to understand why cancer inequalities exist and how to overcome them.

Around 2.3m people in the UK identify as part of the lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) community. These individuals face unique challenges related to cancer, influenced by a complex mix of lifestyle factors, hormonal differences and discrimination, which affect their cancer risk and likelihood of receiving effective diagnosis and treatment. At least seven types of cancer disproportionately affect LGBTQIA+ populations, including anal cancer, breast cancer, cervical cancer, colorectal cancer, lung cancer, prostate cancer, and uterine cancer.

Breaking down barriers to care

"There are still many unanswered questions around sex and gender differences in cancer, which particularly affect the trans community," explains Dr Alison Berner, an Academic Clinical Lecturer at the Barts Cancer Institute, Queen Mary University of London. In addition to seeing cancer patients in the clinic, Dr Berner researches the impact of sex, gender and sexual orientation on cancer, and the roles that genetics, lifestyle and behaviour play.

Dr Berner first became interested in cancer care for transgender people after reading an article in The Lancet highlighting how research was failing to address the risks and needs of this group, with much of our existing knowledge coming from HIV research. “I began working at the Gender Identity Clinic in London one day a week and saw a lot of trans patients with cancer. I started to see the real-world problems they were facing relating to cancer screening and how they are diagnosed,” Dr Berner says.

For example, cervical and breast cancer screening presents significant barriers for trans and non-binary people. Gender dysphoria – the distress caused by a mismatch between sex assigned at birth and gender identity – and a lack of clear information on eligibility can deter people from attending screening. As a result, we may miss catching the early signs of cancer before it advances and becomes more difficult to treat.

Dr Alison Berner stands smiling in front of a blue conference background
Dr Alison Berner, Academic Clinical Lecturer at the Barts Cancer Institute, Queen Mary University of London

In collaboration with Dr Sarah Jackson at the US National Cancer Institute, Dr Berner is leading the Self-TI study, which aims to improve screening for the cancer-associated form of human papilloma virus (HPV) in transgender people. The study explores the feasibility of self-swabbing, which could make the process easier and more accessible for transgender individuals. It also seeks to determine whether transgender people are more at risk of HPV-related cancers than cisgender people, guiding further research and community support.

Co-producing research with the community

An important aspect of designing studies that benefit patients is creating a dialogue with the communities we seek to benefit. “Co-production with the community is crucial,” Dr Berner explains. “Working closely with them is incredibly rewarding and ensures that research is meaningful and impactful.”

Focus groups present one valuable approach. In one project, funded by Queen Mary’s Centre for Public Engagement, Dr Berner is working with trans and non-binary focus groups to design a new study evaluating the community’s unmet needs regarding cancer risk information, screening and care. Supported by facilitators from OUTpatients, an LGBTQIA+ cancer charity, these sessions gauge participants’ experiences and gather feedback on the study’s design, including potential barriers to participation.

Progress pride flag waving on a blue background

In another project, recently funded by the CRUK City of London Centre, Dr Berner is engaging with transgender men and non-binary people assigned female at birth to inform a study on endometrial hyperplasia – a thickening of the uterine lining that can develop into endometrial cancer. Some evidence suggests that gender-affirming hormone therapy increases the risk of endometrial hyperplasia in this population. However, findings are conflicted and the underlying biology is not well understood. With the focus group’s input, Dr Berner will co-produce a study to explore the biology of endometrial hyperplasia and cancer in this population and understand participants’ experiences with gynaecological cancer screening and care.

In both projects, participants receive financial compensation for their time and are invited to co-author reports on their impact, acknowledging their valuable contributions to the research’s design.

A ‘symbiotic relationship’

The unique challenges facing cancer care for transgender people are attracting far more research attention today compared with when Dr Berner entered the field, but many unanswered questions remain.

“Gender and sexual identity data are not recorded consistently in the NHS, making it difficult to collect high-quality data about cancer care in LGBTQIA+ individuals and understand what differences exist. Improving our information standards and the training we provide our healthcare staff is crucial.” Dr Berner says. “In addition, LGBTQIA+ people are hugely diverse and their identity intersects with many other factors such as socioeconomic status, ethnicity, sex and disability, so we need to better understand how these elements play a part.”

Ultimately, a deeper understanding of cancer in transgender people will enhance our knowledge of the complex web of factors influencing the disease and help us to provide better personalised care for everyone. “Investigating cancer in the trans population will also help cis populations, and vice versa – it is a symbiotic relationship,” Dr Berner comments.

Dr Berner also encourages more researchers to engage with the populations they serve – something that she has found meaningful and rewarding. “People can feel afraid of saying the wrong thing or using the wrong language,” she says. “But the key to engagement is to be curious and humble – ask questions humbly, and patients are usually so grateful for being listened to and for being able to bring their ideas into our research.”

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