Clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases can offer new hope for people with rare cancers and pave the way for more effective treatments in the future – yet too many people are unaware of trials and the role they play according to a recent national survey.
Earlier this year, Rare Cancers Australia (RCA) ran its first national Cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs Lived Experience Survey, capturing the views of nearly 2,500 adults with cancer and carers in Australia, 60% of respondents with a rare or less common cancer said their treating team did not even mention clinical trials.
RCA has partnered with Cancer Trials Australia to put the spotlight on rare cancer clinical trials through a national policy roundtable series titled ‘Every patient’s chance: Maximising rare cancer clinical trials in Australia’. The three-part series, commencing on Wednesday 24th September, aims to drive systemic improvements to increase access to and outputs from clinical trials.
While Australia is a recognised leader in cancer clinical trials, with one of the highest rates of trials per capita , there is a gap between trial availability and patient participation. In the state of Victoria alone, first time in human cancer clinical trials almost doubled between 2022 and 2024 . The awareness of trials, support to participate and the rapid translation of results into new standards of care must also increase.
RCA CEO, Christine Cockburn said that there is a significant opportunity to harness Australia’s research and innovation strengths to make more treatments available to people living with rare cancers.
“For many people with a rare cancer, a clinical trial is not just another option – it’s their only option. But too often, patients are not told about, or excluded from, these potentially lifesaving opportunities due to strict eligibility criteria, geography or cost,” Ms Cockburn said.
“No rare cancer clinical trial should fail because it cannot recruit patients. We have the patients, we have the trials, and we can work together to improve access, adherence and the rapid translation of trial data into practice,” she said.
For Eva Bishop, her diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results of pancreatic cancer with a rare BRCA2 mutation saw her undergo multiple surgeries, rounds of chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells and paying over $350,000 out of pocket before accessing two clinical trials and realising the potential they hold for patients.
“The real benefit in clinical trials that I see is that every person who joins a trial is helping contribute to discoveries that could completely transform outcomes for others. They can unlock treatments for patients of the future and hold so much potential value that goes way beyond those of us who are currently participating,” she said.
Eva will be one of several cancer patients coming together with, clinicians, industry representatives, policy makers and other stakeholders exploring the barriers to participation and ways to bridge the gap between Australia’s strong clinical trial capability and the low awareness of clinical trials among patients.
Medical Oncologista doctor who specialises in the study, diagnosis and treatment of cancer and Chair of Cancer Trials Australia, Professor Jayesh Desai, spoke to the critical nature of trials not just for patients, but also clinicians.
“For people with rare cancers, access to a clinical trial is often the difference between treatment and no treatment. They play a vital role for individual patients as well as furthering our knowledge and practice for the patients of the future. Exploring ways in which we can expand on the repertoire of available trial options is of critical importance, and an area we will be focusing on in this roundtable series,” Professor Desai stated.
Roundtable dates and locations:
- Sydney – Wednesday, 24th September
- Melbourne – Monday, 13th October
- Brisbane – Wednesday, 27th November
(This is a three-part series and events will be held both in-person and online.)
To register your interest in attending a session or to receive the full program, please contact [email protected].