Your Voice, Your Story

This photo was taken in 2020. I had just discovered a recurrence of my stage 4 ovarian cancer and my husband and I were waiting to hear about an immunotherapy clinical trial. This image generates many mixed emotions and memories for me – feelings of hope, uncertainty, and frustration around clinical trials, and of also being overwhelmed and vulnerable, emotions that always accompany any new treatment where the outcome is unknown. I was hopeful that it would work, as one hears great stories about trials, but I felt so powerless, small, and insignificant – like I was just another number (I was the last patient to be recruited in Australia). Healthcare can be so dehumanizing at times; it’s easy to forget to see the whole person behind their patient data. Unfortunately, this 2020 trial did not work, nor did subsequent chemotherapy. However, I was able to access another immunotherapy drug combo off label, which had worked in a different gynae cancer setting. This drug combo had no clinical trials open at the time that I was eligible for, which is the frustrating aspect of clinical trials – ELIGIBILITY and ACCESS! Often the trials/drugs are there, but it isn’t easy to get connected to the right trial at the right time. I have a very rare form of ovarian cancer (clear cell pathology), so I am often excluded from clinical trials and PBS listed drugs which other, more common cancers (and often other types of ovarian cancer), get access to. Without a trial, I had to pay up to $12,000 a month for these off-label drugs. A sound investment given that they kept my disease stable for 2.5 years and enabled me to witness many family milestones (including my eldest daughter turning double digits – a milestone I wasn’t sure that I would reach when this photo was taken!). I appreciate that extrapolation of previous clinical trial data enabled me to access these drugs off label, and for that I am extremely grateful. However, to be financially penalised and denied trial access due to the pathology of my disease seems unethical. And if I was not a scientist with a healthcare background, would I have been knowledgeable and confident enough to seek these off-label drugs? Having lived with advanced cancer for over 6 years now, I have observed many barriers and issues pertaining to trials. Accessibility to clinical trials is dictated not only by the patient’s type of cancer, but also where they live, who their treating oncologist is (the Dr is the gatekeeper for all information regarding treatments and trials), and how empowered and informed the patient is about clinical trials. As we move to a more tumour agnostic treatment approach with genetic testing of both blood and tumour tissues, and thus more personalised treatments, we need to ensure that all cancer patients are offered such genetic testing. And these tests need to be provided in a timely manner with the support of a reliable, transparent, truly collaborative, and sophisticated clinical trial platform. Clinical trials CAN extend, and even save, lives. I dream of a day where clinicians, pharma, patients, and advocates come together to find creative solutions to current trial accessibility issues, to ensure that no-one is left behind.

This image captures a moment in time during my cancer journey. Time is the most precious commodity in my life: time with my family, time to care for my son, time with my family and friends, and time to live a full and happy life. My husband captured this moment of hope and smiles while I was in hospital. My treatment was working. I was juggling my rare cancer treatment, with the support of our son, my husband and my mum. Time and hope are the foundation of coping with my cancer. Clinical trials have gifted me both: time on this earth and hope for future treatments.

This is a picture of my twin boys, who were born premature (28 wks 6 days). Today, and thanks in part to clinical trials, the boys are happy, healthy and wild. The knowledge gained from past clinical trials helped inform the boys’ care in neonatal intensive care unit (NICU) and beyond. As a NICU parent, clinical trials mean answering the important questions to help: prevent or reduce the risk of at-risk pregnancies improve the care for premature and sick babies in the NICU improve outcomes for babies and their families after NICU.