Select articles from recent issues of the AYA Oncology e-News, published by the Victorian Adolescent & Young Adult Cancer Service (ONTrac at Peter Mac).
September 2023
Enhancing inclusivity and safety for LGBTIQA+ youth
Wear it Purple Day was enthusiastically celebrated by the Victorian AYA Cancer Team and many other health services on Friday 25 August in honour of a shared commitment to fostering supportive, safe, empowering and inclusive environments for rainbow young people.
DID YOU KNOW? When asked about their service preferences:
See below for practice resources, patient resources and referrals, professional development opportunities and more to help you and your service on your own LGBTIQA+ inclusivity journey.
Practice resources:
- LGBTIQA+ guides for health professionals (QLife)
Topic-based guides for working with LGBTIQA+ people (e.g. young people, gender diversity, families, rural & regional and many more) - 5 ways to support trans and gender-diverse youth (Rainbow Network)
- Inclusive practice with intersex patients (Intersex Human Rights Australia)
- Quality framework for LGBTIQA+ inclusive services
Rainbow Tick is an evidence-based framework to help services become LGBTIQA+ inclusive. Use to assess and guide your service provision, or seek formal accreditation.
Patient resources and referrals:
- Being OK…Being You (Victorian AYA Cancer Service)
A guide for young people who identify as LGBTIQA+ and have cancer - LGBTQI+ People and Cancer (Cancer Council)
A guide for patients, their families and friends - LGBTQI+ resource guide for cancer patients and loved ones (international)
Websites, books, media, advocates and more - QLife
National peer support and referral service (phone or webchat); health professionals are also welcome to contact them for advice/support - Switchboard
Vic/Tas QLife partner offering a range of peer-driven support services and referrals as well as secondary consultations - LGBTIQA+ services and referral database (QLife)
Key LGBTIQA+ services by state; searchable referral database
Professional development and training:
- Rainbow Health Australia
Introductory online course and other training options for health and community services - Zoe Belle Gender Collective
DHHS-funded, specialist training packages for different types of health services that can be tailored to all ages or youth specifically. - Queerspace
Tailored training on a range of topics
Data and research:
- Writing Themselves in 4: Victoria summary
Overview of the health and wellbeing of Victorian LGBTIQA+ young people aged 14-21 based on 1,859 Victorian responses from a 2019 national survey) - Private Lives 3: Victoria summary
Overview of the health and wellbeing of Victorian LGBTIQA+ people aged 18+ based on 2,333 Victorian responses from a 2020 national survey) - Rainbow Health Australia
Other research summaries and resources
2023 AYA Cancer Congress reflections
The biennial Global AYA Cancer Congress is the largest and most significant gathering of the international AYA cancer community. This year’s Congress was held in June 2023 in sunny Long Beach California and themed Real World AYA Cancer Care: Progress and Opportunities. 
A common theme this year was disparities in AYA outcomes and care, powerfully reinforced by the keynote presentation delivered by science writer and author Rebecca Skloot. She highlighted the racial and ethical inequities embedded in our healthcare system through the story of Henrietta Lacks, the woman behind the immortal HeLa cells. Henrietta was a young African American woman diagnosed with cervical cancer in 1951 whose cells were taken and shared widely for research without her knowledge or consent- as was common practice at the time- both prior to her death and in the many decades since. Rebecca spent years researching her 2010 book The Immortal Life of Henrietta Lacks, including interviewing Henrietta’s family who spoke of the trauma of being told their mother’s cells were still alive, which they understood to mean their mother was still alive, in a prison cell. It was a powerful call-to-action on themes of injustice, inequity, health literacy and informed consent as we seek ways to improve the outcomes and care of our own AYA patients.
“If you’re not at the table, you’re on the menu”: the criticality, power and value of meaningful consumer engagement
Undoubtedly the most impactful perspectives we heard across the three days (based on the extended standing ovation they received) were those of young people themselves. In a standout plenary session Marginalized and Minoritized: Disparities and Unequal Treatment in AYA Oncology, co-chairs Christabel Cheung (University of Maryland) and Michael Roth (University of Texas MD Anderson Cancer Centre) demonstrated the power of authentic collaboration with patient advocates with embodied knowledge and a call to action to all clinicians and researchers to prioritise these relationships. Their invitation to AYA advocates to ask difficult questions about challenges within the healthcare sector which exacerbate disparities was genuine and far from tokenistic and left us all with no doubt that harnessing embodied knowledge of survivor advocates is essential to creating meaningful change. Court Simmons spoke powerfully about the impact of living with Li-Fraumeni syndrome, his multiple cancer diagnoses, and living as a transgender individual. He implored us to listen with openness and humility, and to be willing to sit with discomfort and to learn.
A focus on data and outcomes for young people: is what we’re doing making a difference?
Data relating to the changing profile/incidence of various cancers in the AYA cohort, disparities in developing countries and epidemiological and other outcomes featured prominently in this year’s conference. There was a general sense from some Australian attendees of the data presented across a number of areas reinforcing what we know and see in practice.
“This slide is hard” said AnnaLynn Williams (University of Rochester Medical Centre), acknowledging those with lived experience in the room when presenting her 2021 paper Rethinking Success in Pediatric and Adolescent Cancer: Beyond the 5 Year Survival. In speaking about excess deaths in young people diagnosed ages 15-19, AnnaLynn noted, “We really haven’t made much improvement in this specific demographic group. And when we add in deaths occurring 10 or more years from diagnosis, the total number of excess deaths is actually increasing over time.” A provocative statement highlighting that the 5-year overall survival rate commonly used as the primary benchmark of success does not accurately reflect the prevalence of late onset toxicities associated with receiving treatment at a young age, or the many decades of extended life post diagnosis.
AYA cancer care in Australia: a reputation for excellence
Youth cancer services and research in Australia are very well-regarded amongst our international peers. The Australian representation at this year’s conference was also notable, with attendance by staff from all jurisdictions and several dozen presentations and posters on diverse topics highlighting our place at the forefront of AYA cancer care innovation.
“The onset of cancer in an adolescent or young adult not only affects who they are, but also who they become.” ~David Wright, TYAC nurse, Manchester UK 2013
Attending this conference was a powerful reminder of all the work, research, talent and continual improvement that goes into AYA cancer care, and how we must continue to recognise that each individual young person brings their own constellation of history, relationships and priorities. They are so much more than their diagnosis, and each story, struggle, and triumph shapes their outlook on life and how they manage the demands of treatment and life beyond. As clinicians, it is our responsibility to create a safe space where these young people feel valued and understood and receive the absolute best care, regardless of location, demographics or barriers.
Mark your calendars- the next Global AYA Cancer Congress will be in Melbourne in December 2024! Sign up here to receive updates.
February 2023
September 2022
AYA Can-Sleep is an 