Category: Cancer community

International Childhood Cancer Day

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At CRBF, we firmly believe that hope lies in research, and we are fortunate to have some of the world’s leading experts right here in Australia.

Over the past 12 months, we have been proud to co-fund the following innovative paediatric and AYA research projects.

CaSP Sarc Programme – Omico Australia UNSW

We are excited to announce the launch of  the MoST/CASP-SARC Initiative through Omico Australia, a pivotal new research project focused on improving treatments for sarcoma – one of the most challenging and aggressive cancers. This initiative will help us better understand sarcoma and pave the way for more personalised, effective treatments. 

 The research will focus on three main areas:

  • Harnessing Real-World Data – Analysing information from over 1,500+ sarcoma patients who took part in Omico’s MoST and CASP initiatives. Researchers aim to evaluate current treatment efficacy, identify critical gaps in care, and explore strategies to improve patient outcomes.
  • Studying Patient Samples – By analysing biological samples from past MoST-led trials, we aim to find clues (called biomarkers) that can explain why some treatments work or don’t work. This will guide us toward better therapies in the future.
  • Targeting Proteins for Personalised Treatments –Scientists will investigate specific proteins in sarcoma patients that could be used as targets for new, precision-based therapies. This could lead to improved outcomes and a better quality of life for people with sarcoma.

Hudson Institute Sarcoma Accelerator 

Under the expert supervision of Professor Ron Firestein and Associate Professor Jason Cain, this initiative will create a comprehensive collection of tumour samples from sarcoma patients.

By leveraging cutting-edge technologies, including artificial intelligence (AI), these samples will be studied in intricate detail. The  Programme will provide a comprehensive collection of tumour samples from sarcoma patients and grown as avatar/cell-line models. These models will be studied in detail using cutting-edge technology, including artificial intelligence (AI). This approach aims to discover new, more effective treatment options tailored to each patient’s specific type of sarcoma. By understanding the unique characteristics of each tumour, we can develop targeted therapies that are more likely to be effective.

The cell line models will be comprehensively profiled in three dimensions (genomic, epigenomic, and transcriptomic) to provide both gene-specific and pathway-level analyses of sarcoma cancer models. The models and associated data developed through this initiative will form an invaluable resource, helping researchers identify and utilise appropriate sarcoma models for investigational research.

Significantly, data will be shared with the research community via our portal (vicpcc.org.au/dashboard). This publicly available database, already used in over 50 countries, will aid sarcoma research on a global scale.

This pioneering effort aims to discover new, more effective treatment options tailored to each patient’s specific type of sarcoma.

NK Cell Programme Ian Frazer Institute 

A funding collaboration by several national sarcoma not for profit organisations, supporting the work of Professor Fernando Guimaraes and his team from the Ian Frazer Institute of Translational Research in Queensland, has led to a significant step forward in the search for a cure for some of the most sinister paediatric sarcomas. The Tie Dye Project, Richies Rainbows, The Kids Cancer Project, Bricks and Smiles – the Zach Minty Project, Tour de Cure Spring Lunch, CRBF, and ANZSA supported by generous donations from Kicking Goals for Xav, Stoney’s Steps Against Sarcoma and Stop Sarcoma

Paediatric sarcomas, including rhabdomyosarcoma, Ewing sarcoma and osteosarcoma, represent a group of malignancies that significantly​ contribute to cancer-related ​illness and mortality in children and young​ adults. These cancers share common challenges, including high rates of metastasis,​ recurrence or treatment resistance, leading to a 5-year survival rate of​ approximately 20% for patients with advanced disease stages.

Despite the critical​ need, therapeutic advancements have been limited over the past three ​decades.​ The advent of chimeric antigen receptor (CAR)-based immunotherapies offers​ a promising avenue for novel treatments. However, CAR-T cells have faced significant​ challenges and limited success in treating solid tumours due to issues​ such as poor tumour infiltration​, immunosuppressive tumour microenvironments​ and off-target effects. In contrast, the adaptation of CAR technology for​ natural killer cells has demonstrated potential in both haematological ​(blood) and​ solid tumours​ (A solid tumor is a mass of solid cancer cells that grows in organ systems and can appear anywhere in the body​), suggesting a new therapeutic strategy for paediatric sarcomas​.

CCIA Sarcoma Biobank

Young Australians fighting sarcoma, an aggressive tumour that mainly affects children, teenagers, and young adults, will welcome the announcement this week of an exciting new initiative to boost vital research into this disease.

The initiative, known as the ‘Paediatric Preclinical Biobank’, has been made possible through funding of $312,000 by the Cooper Rice-Brading Foundation, which received a generous donation from the Sutcliffe Family Trust in memory of both a young family member taken by sarcoma, and of Cooper Rice-Brading, who also passed away from osteosarcoma in 2017.

Jeremy Sutcliffe, the inaugural Chairman of the Cooper Rice-Brading Foundation, said: ‘Sarcoma is a devastating cancer which disproportionately affects young people and yet is not well known and attracts insufficient funding. The Biobank is a fantastic initiative on the road to developing effective interventions and treatments which will save the lives of our youth in the future.’

The Paediatric Preclinical Biobank will be located at Children’s Cancer Institute, where researchers have developed more than 400 ‘avatar models’ — living models of disease derived from the cancer cells of children with high-risk cancers including sarcoma. These models are vital for the testing of new therapeutic approaches. The funding will support the Biobank’s flagship sarcoma program and will allow 80 unique paediatric and adolescent and young adult (AYA) sarcoma models to be characterised, expanded and made available to the research community.

 

Enhancement of anti-sarcoma immunity

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Enhancement of anti-sarcoma immunity by NK cells engineered with mRNA for expression of a EphA2-targeted CAR

A funding collaboration by several national sarcoma not for profit organisations, supporting the work of Professor Fernando Guimaraes and his team from the Ian Frazer Institute of Translational Research in Queensland, has led to a significant step forward in the search for a cure for some of the most sinister paediatric sarcomas. The Tie Dye Project, Richies Rainbows, The Kids Cancer Project, Bricks and Smiles – the Zach Minty Project, Tour de Cure Spring Lunch, CRBF, and ANZSA supported by generous donations from Kicking Goals for Xav, Stoney’s Steps Against Sarcoma and Stop Sarcoma

Paediatric sarcomas, including rhabdomyosarcoma, Ewing sarcoma and osteosarcoma, represent a group of malignancies that significantly​ contribute to cancer-related ​illness and mortality in children and young​ adults. These cancers share common challenges, including high rates of metastasis,​ recurrence or treatment resistance, leading to a 5-year survival rate of​ approximately 20% for patients with advanced disease stages.

Despite the critical​ need, therapeutic advancements have been limited over the past three ​decades.​ The advent of chimeric antigen receptor (CAR)-based immunotherapies offers​ a promising avenue for novel treatments. However, CAR-T cells have faced significant​ challenges and limited success in treating solid tumours due to issues​ such as poor tumour infiltration​, immunosuppressive tumour microenvironments​ and off-target effects. In contrast, the adaptation of CAR technology for​ natural killer cells has demonstrated potential in both haematological ​(blood) and​ solid tumours​ (A solid tumor is a mass of solid cancer cells that grows in organ systems and can appear anywhere in the body​), suggesting a new therapeutic strategy for paediatric sarcomas​.

In a paper published 6th December, 2024 in the academic publisher, Wiley Clinical Research Journal, preliminary findings provide a foundational basis for the clinical evaluation of EphA2-targeted CAR-NK cell therapy across a spectrum of paediatric sarcomas. The enhanced anti-tumour effects observed in vitro/vivo suggests potential
for improved therapeutic outcomes in hard-to-cure paediatric sarcomas.

Professor Fernando Guamaeres from the Ian Frazer Institute of Translational Research, said “Our latest research focused on reprogramming a type of immune cell, called a natural killer (NK) cell, to target and eliminate aggressive paediatric sarcoma cancers. These engineered cells showed outstanding ability to kill sarcoma cells in both laboratory experiments and early animal studies. This brings us one step closer to developing a new therapy for young patients facing these challenging cancers.

Right now, we’re starting to focus on the next phase: preparing for future clinical trials. It’s an exciting time, and support from donors is crucial as we work to turn this research into real, impactful treatments.”

To read more about this exciting development go to

Clinical Translational Med - 2025 - Lam - Enhancement of anti‐sarcoma immunity by NK cells engineered with mRNA for

Sarcoma Symposium RPA 2024

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The day began with a warm welcome from Dr Richard Boyle, Orthopaedic Oncologist Surgeon, and Director RPA Bone and Soft Tissue Sarcoma Unit.

Orthopaedic /bone tumour surgeon Dr Maurice Guzman then went on to provide update on action items from the 2023 Sarcoma Summit & next steps.  A copy of this presentation and the progress made is attached.

Professor David Thomas, Chief of science and strategy, Omico, Centre for Molecular Oncology UNSW delivered a compelling address on “Genomics and tumour agnostic therapies as standard of care for sarcoma patients”  This proposal is a visionary approach which delivers timely and equitable solutions to those who may otherwise have not have access to matched therapeutics.

Dr Riona Pais, Senior Staff Specialist, RPA Palliative Care Service spoke about the importance of supportive care, and what standard of care should look like for those in need.

An informative and uplifting video followed provided an insight into the “Impact of a Clinical Nurse Consultant on the sarcoma patient journey”. Aisling Byrne, Hannah Blyth, Hilary Myers, Clinical Nurse Consultants, at the RPA Bone and Soft Tissue Sarcoma Unit and an integral part of the patient experience.

Tayia Yeates, Service Manager, Manly Adolescent and Young Adult Hospice introduced her presentation which stepped the audience through the facility, which was the vision of the late Kay Van Norton Poche, with her colleague touching upon the very harrowing process of end of life, highlighting a deeply moving case study of the lengths the service can go to to ensure patient’s wishes are met.

Kylie Tarleton, a proud Wiradjuri woman, Senior Manager Diversity & Inclusion TAFE NSW and Mother of sarcoma survivor, Cooper Tarleton, delivered a remarkable presentation on Strength in Culture:   Cooper’s Cancer Journey through Adolescence and Strength in Culture, often drawing on very personal experience.  This provided those present with a valuable and raw personal insight into the challenges and opportunities that lie in the treatment processes for the Aboriginal & Torres Strait Island community.

The Open forum discussion convened by Mitchell Rice-Brading, Sarcoma Patient Support Advocate, Cooper Rice-Brading Foundation saw panellists Rebecca Minty, Carmen Scheffer, Prof Wayne Nichols, Dr Madeleine Strach, and Keith Cox, OAM, cover topics for discussion including genomic screening, timely and equitable access to clinical trials, and a wrap -around service for those diagnosed with sarcoma.

Questions were invited from the audience and while time was the enemy, a robust discussion took place.

After a much-needed tea break, Dr Dan Franks chaired the second session and did a superb job of what can be a very challenging role.  A/Professor Fernando Guimaraes, University of Queensland spoke about the exciting developments with Natural Killer (NK) Cell Therapy.  This trial has been proudly funded by The Tie Dye Project, The Kids Cancer Project, Tour de Cure, and Bricks and Smiles.

A/Professor Marianne Phillips, Paediatric Medical Oncologist, Perth Children’s Hospital with over 36 years’ experience in paediatric oncology, presented on the Inter-Ewing-1 trial in Australia, and the evolution of this trial, reminding us all of the importance of these very important advances for sarcomas with traditionally low survival outcomes.

Dr Maya Kansara, Head Translational Oncology Lab, Omico stepped those in the audience through the forthcoming CaSP SARC: a sarcoma research programme attached to the Australian Cancer Screening Programme CaSP.  This programme is expected to enrol around 3000 patients making it the largest of its kind in the world.

Kate Alexander, Research Manager, Surgical Outcomes Research Centre (SOuRCe) outlined the exciting advances in the collection of data for bone and soft tissue surgeries in NSW, which will contribute to unlocking the answers to the questions that currently exist.

Dr. Geoffrey Murphy, Senior Resident Medical Officer, RPA Orthopaedics led an enlightening talk on “Whoops Lesions”: Incidence and Outcomes of Unplanned Sarcoma Excisions and the research which is underway.  This research is designed to work out how these all-too-common occurrence can be prevented.

Christine Cockburn, CEO, Rare Cancers Australia may have been one of the last speakers, however her overview of RCA’s sarcoma patient support was pivotal to the session.  She highlighted the importance of diverse and relevant means to support those living with sarcoma.  RCA provide support to those living with rare cancers, including sarcomas and are aligned with ANZSA in their provision of support

He event finished with a Fireside chat: The impactful work of not for-profit organisations & the role of philanthropy in sarcoma research

Rebecca Minty, Founder, Bricks and Smiles, Mary Lou Minty, Bricks and Smiles, Mandy Basson, Executive Director, Sock it to Sarcoma! each spoke about their remarkable work funding research, raising awareness and supporting those living with sarcoma.

It was then a very robust networking session with the last of the guests leaving after 7.30pm!

The day would not have been possible without the support of SLHD, Insitute of Academic Surgery, RPA, and NSW Health, together with the truly wonderful behind the scenes work of Dr Sophie Hogan, Matthew Halpin, Anja Sauer, and Meghan Cue Floresca.

We look forward to seeing you all next year when we do it all again!

Sarcoma Workshop 1 - Update on 2023 Sarcoma Summit Action Plan & Service Developments - 18 Sep 24

The 2024 Sarcoma Symposium

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Registrations are now open for the 2024 Sarcoma Symposium.

 
November 8th 
Kerry Packer Theatre, 
Royal Prince Alfred Hospital, 
Missenden Road, 
Camperdown
1:00 PM to 5:30 PM.
 
This is a hybrid event, and if you are unable to attend in person you are welcome to contribute online.
 
There will be an open forum, an expert panel of both those living with sarcoma, carers and sarcoma clinicians at approximately 2.20.  The audience is encouraged to participate via Slido as the aim is to have as many perspectives as there are people wishing to provide them.
 

Topics for discussion this year:

 
Should genomic screening form part of a standard of care for all sarcoma patients?  Why? When should it occur?  Will this change the treatment plan?
 Should information about all relevant clinical trials be provided to patients at the time of diagnosis? How? By who? Where should this be available?  In what format?  Why?
 
How can we as a collective enhance community awareness of sarcoma to help reduce the instance of misdiagnosis?
 
What education is needed?  For who in particular? allied health, GP’s Physiotherapists, dentists etc?  How do we do this?  forums, webinars. brochures? 
 
What are the most important elements of support from the moment of diagnosis from a patient/family perspective?
 
​Who should provide that support? How can we use technology to enhance the support provided?   Would a similar model to that of the McGrath Breast Care Nurses work for sarcoma?  Why?
 
We look forward to welcoming you on the 8th, and to provide you with an event which encourages networking and open, robust discussion for those living with sarcoma.
All clinicians, researchers, carers, family, patients, allied health professionals and those volunteering with sarcoma working are invited to attend the day, and to have their voices heard.  Please feel free to share this link.

To register

RSVP: https://www.slhd.nsw.gov.au/events/rpa-sarcoma-symposium/

Click here to join the event online:

https://events.teams.microsoft.com/event/bde93b9e-e78f-4672-956f-dcbd827acba7@a687a7bf-02db-43df-bcbb-e7a8bda611a2

Should you be attending in person, please refer to the attachment and follow directions on the link provided.
Should you be travelling from interstate or a remote/regional area, please advise Tania Rice-Brading taniarb@crbf.org.au no later than the 29th October, 2024.

Programme for the event

Hudson Institute Sarcoma Accelerator Programme

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As the sun sets on #Global Sarcoma Awareness Month, we take this moment to recognise the hope that research brings to the fight against this formidable cancer.

Today, we are delighted to announce funding, and the subsequent commencement of the Sarcoma Accelerator Programme through the Hudson Institute of Medical Research, Melbourne.

Under the expert supervision of Professor Ron Firestein and Associate Professor Jason Cain, this initiative will create a comprehensive collection of tumour samples from sarcoma patients.

By leveraging cutting-edge technologies, including artificial intelligence (AI), these samples will be studied in intricate detail. The  Programme will provide a comprehensive collection of tumour samples from sarcoma patients and grown as avatar/cell-line models. These models will be studied in detail using cutting-edge technology, including artificial intelligence (AI). This approach aims to discover new, more effective treatment options tailored to each patient’s specific type of sarcoma. By understanding the unique characteristics of each tumour, we can develop targeted therapies that are more likely to be effective.

The cell line models will be comprehensively profiled in three dimensions (genomic, epigenomic, and transcriptomic) to provide both gene-specific and pathway-level analyses of sarcoma cancer models. The models and associated data developed through this initiative will form an invaluable resource, helping researchers identify and utilise appropriate sarcoma models for investigational research.

Significantly, data will be shared with the research community via our portal (vicpcc.org.au/dashboard). This publicly available database, already used in over 50 countries, will aid sarcoma research on a global scale.

This pioneering effort aims to discover new, more effective treatment options tailored to each patient’s specific type of sarcoma.

The Sarcoma Accelerator Programme will provide hope by focusing on personalised treatments for children with sarcoma.

We extend our deepest gratitude to thanks to the profound generosity of the Hofer Muir Philanthropic Organisation, and our individual donors whose tireless support of sarcoma in Australia support who the Cooper Rice-Brading Foundation (CRBF) to have funded the first phase of the Sarcoma Accelerator Programme at the @Hudson Institute of Medical Research.

Prof Firestein and A/Prof Cain expect this new program to be a game-changer in the fight against childhood sarcoma.

Cutting-edge sarcoma research

“We will create a comprehensive collection of tumour samples from sarcoma patients and use cutting-edge technology, including artificial intelligence (AI), to study these samples in detail,” Prof Firestein said. “This will help us discover new treatment options that are more effective and tailored to each patient's specific type of sarcoma.”

Colin Brading, A/Chair of the Cooper Rice-Brading Foundation, remarked, “We are profoundly committed to advancing sarcoma research in Australia. The innovative research spearheaded by A/Prof Jason Cain is anticipated to pave the way for new, more effective treatments. The Hudson Institute, is a recognised global leader in paediatric cancer research, and as such, is the ideal partner for this crucial collaboration.

The potential of discovering answers to the complex questions that currently elude our brightest scientific minds has the potential to be a transformative breakthrough in the fight against childhood sarcomas. Such advancements could bring much-needed hope to
countless families affected by this devastating disease, fundamentally altering the landscape of paediatric sarcomas.

Collaborative sarcoma research providing hope

“By understanding the unique characteristics of each tumour, we can develop targeted therapies that are more likely to be effective. This approach has the potential to improve survival rates and quality of life for young patients living with sarcoma.” (A/Prof Cain)
As part of our collaboration with the Zero Childhood Cancer Program, samples will be collected from children’s hospitals across Australia and internationally as well. Sarcoma samples will be analysed using an innovative molecular pipeline developed at the
Hudson Institute of Medical Research, that streamlines the identification of cancer precision medicines.

This program will leverage advanced technologies and international collaborations to create a valuable resource for sarcoma research. The data and tumour models we develop will be shared with the global research community to accelerate the discovery of new treatments. Our goal is to bring hope to families affected by sarcoma and improve the outcomes for children with this challenging disease.

Hudson Institute’s sarcoma program includes both clinical and discovery research projects utilising a broad range of patient tissue, in vitro and in vivo preclinical models, and techniques.

 

The legacy of Dr Matthew Fisher

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In March 2020, Dr Matthew Fisher received the devastating diagnosis of rhabdomyosarcoma and embarked on one of the most grueling treatment regimens imaginable. Throughout this ordeal, his courage and resilience never faltered, and his selflessness remained boundless.

Matt is survived by his much-adored wife, Naomi, who stood as his unwavering rock, walking every step of this harrowing journey by his side. Despite the immense challenges, she skilfully balanced the demands of caring for their two precious daughters, Vivienne and Sylvie, who were aged four and one at the time.

This young family, whose seemingly perfect life was shattered by sarcoma, has imparted profound lessons. Their humility and grace in the face of adversity were extraordinary, embodying perseverance and determination each day, even when faced with little positive news. Their enduring love story is a testament to the strength of their bond and will forever be remembered.

The extended family also played crucial roles, each member stepping up to envelop Matt, Naomi, and the children in a shroud of love and care.  We learned much from witnessing the humility and grace with which Matt, Naomi, and their extended families, including his parents and sister in the UK, faced immense challenges.

Matt, a softly spoken and modest man, demonstrated extraordinary courage and resilience throughout one of the most brutal treatment regimens. During his treatment in 2020, Matt continued his work as a chemical patent examiner, researching the patents on his chemotherapy drugs and sharing his findings with his oncologist, who believed one of the drugs to be an Australian invention.

Matt’s oncologist, Associate Professor Paul Craft, is renowned for his exceptional care, compassion, and expertise. Always willing to explore all treatment options and think innovatively, Professor Craft ensured Matt’s needs were heard and promptly addressed. Matt received the highest standard of care from a clinician with both exceptional skill and a profound sense of empathy.

Professor Craft’s Nurse Coordinator, Amber, played an integral role in the outstanding Canberra team. This often-overlooked role is crucial, alleviating much of the burden from the patient and family.

The importance of early diagnosis for sarcoma patients is globally recognised and can significantly impact the disease’s trajectory. A special doctor at the Canberra Hospital emergency department, “Dr. Nick,” was unsatisfied with the initial scan results and promptly referred Matt to the sarcoma specialist multi-disciplinary team. This pivotal decision, made by a young doctor encountering a rare cancer, was crucial.

Given Matt’s scientific background, he wished to support the critical research needed to change the current trajectory for sarcoma patients. 100% of this research fund were directed to the IL-23 sarcoma sub-study at the Garvan Institute of Medical Research. This pioneering study, open to all sarcoma sub-types has provided valuable steps forward to unlocking the secrets of sarcoma.

Matt’s legacy has raised in excess of $100,000 for the IL-23 study, a truly remarkable testament to his enduring impact, generosity and his profound concern for those who would walk this road behind him.

 

9 years strong. Brendon’s fight against sarcoma

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Introducing Brendon Onorato, a husband and father of two, in the fight against myxoid liposarcoma.

Diagnosed in 2015, Brendon has faced immense challenges over the past nine years with unwavering resilience and hope. Despite the rigours of living with this relentless cancer, he continues to be immersed in his young family, maintain a positive attitude, and explore new avenues in integrative oncology after his terminal diagnosis.

Join us as Brendon candidly shares his powerful story, inspiring us all with his courage and determination.

Meet the remarkable Anne Pantazis

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Imagine at the age of  53, relishing that special time in your life when your children have spread their wings and the countless plans you have to enjoy with your life partner. Then, those dreams and more come crumbling down with the diagnosis of myxofibrosarcoma.

Over the past four and a half years, Anne Pantazis (@anne__bionica) has faced immense challenges with unwavering resilience, incredible strength, and unyielding hope. In the next 30 minutes of this interview, Anne inspires, shocks, and delights with a roller coaster of raw honesty, served with a side dish of hope and the desire to evoke change.

 

July is Sarcoma Awareness Month

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July is Sarcoma Awareness Month. While sarcoma awareness is a continuous effort, this month, the message is heightened globally.

Sarcomas are rare and aggressive cancers that can arise in the bone and soft tissue, affecting any area of the body and all age groups. These cancers are often misdiagnosed and present significant treatment challenges.

This month, we are focusing our attention on those aged 30 and above. Each of these individuals faces unique challenges related to their age and the time of their life when sarcoma entered their lives completely unannounced.

We are privileged to have many remarkable individuals whose lives have been affected by sarcoma share their stories, highlighting the unique struggles faced by those in this age group.

Today, we kick off Sarcoma Awareness Month featuring “teasers” from three remarkable women – Naomi, Kaela, and Anne, whose lives have each been changed irreversibly by a sarcoma diagnosis. The long versions of their interviews will feature throughout July, along with the stories of several men who have also lived with this cancer and have generously agreed to be interviewed.

The destructive nature of sarcomas is matched only by the frustration of those fighting them. With limited research and awareness, sarcoma remains a formidable adversary. By sharing these courageous stories, we hope to build greater awareness around this devastating cancer.

If you or a loved one suspect a sarcoma, please contact your doctor immediately to discuss.  A comprehensive list of all verified sarcoma specialists in Australia, may be obtained by going to https://www.crbf.org.au/sarcoma-multi-disciplinary-teams/ or by contacting the Australia New Zealand Sarcoma Association https://sarcoma.org.au/.

Our thanks to Mitch and Steph from  for once more going over and beyond with their work and creative direction behind the camera, and the microphone.

Special thanks to the fabulous Michael “Wippa” Wipfli” for his voiceover, and for the incredible support he provides to sarcoma in Australia.

Cancer: The Modern Plague. Prof David Thomas

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Below is a summary of Professor Thomas’s address.

Should you have any specific questions or need further assistance with the content included in Professor Thomas’s address, the original may be accessed in the video below, or feel free to contact me directly at taniarb@crbf.org.au

June 26th, Rare Cancers Day saw Rare Cancers Australia (RCA) and Omico Australia collaborate to host an address at the National Press Club by Professor David Thomas. The address, titled “Cancer: The Modern Plague,” underscored the pressing need for accessible, personalised therapeutics in cancer treatment.

Professor David Thomas: A Visionary Approach

Professor David Thomas, the Chief Science and Strategy Officer of Omico, founded the organisation in 2019. He has been instrumental in translating cutting-edge technologies into practical therapeutic advancements for cancer patients. With over 260 research publications and numerous papers in high-impact journals, Professor Thomas has received international recognition for his contributions to oncology. His vision is to ensure equitable, sustainable, and affordable access to precision oncology for all Australians diagnosed with cancer.

Rare Cancers Australia: A Mission of Support and Advocacy

RCA, under the leadership of CEO Christine Cockburn, is dedicated to improving the lives and health outcomes of Australians with rare, less common, and complex cancers. RCA believes no Australian should face their cancer journey alone and provides personalised support while advocating for better access, affordability, and quality of care.

Genomics and the Future of Cancer Treatment

Cancer is caused by genetic mutations in human DNA, and genomics plays a critical role in reading DNA and mapping cell mutations. This molecular understanding enables the identification of unique tumour codes and the development of targeted therapies. Historically, the last significant advance in the understanding of cancer was the mid-19th century introduction of the light microscope, which could identify cell makeup but not the molecular drivers of cancer. Genomics now offers the potential to identify deranged cells, leading to a significantly greater understanding and subsequently new drug targets.

Cancer Statistics and the Growing Burden of Rare Cancers

Australia sees 150,000 cancer diagnoses each year, equating to one diagnosis every ten minutes, and 135 cancer-related deaths daily.

In 2024, it is projected that rare cancer diagnoses will reach 18,000, making it the third most common cancer collective after prostate and breast cancer. Tragically, 7,000 Australians are expected to die from rare cancers in 2024, second only to lung cancer.

Globally, rare cancers claim a life every 45 seconds.

The Role of Genomics and Targeted Therapies

The integration of genomics into cancer treatment has revolutionised the identification of drug targets and the development of personalised therapies. These advancements are especially crucial for rare cancer patients, as they offer targeted and more effective treatment options. However, the benefits of these cutting-edge therapies can only be realised if patients can access them without delay.

The Critical Nature of Time for Rare Cancer Patients in Accessing Clinical Trials

Time is of the essence for rare cancer patients seeking access to clinical trials. These patients often face aggressive and rapidly progressing diseases, making timely access to innovative treatments not just beneficial, but potentially life-saving. The journey to access clinical trials is fraught with delays and barriers that can have devastating consequences for patients and their families.  These come in the form of the urgency attached due to the aggressive nature of their cancer, lengthy approval processes, and barriers to participation.

Advancements in Early-Phase Trials

20 years ago, sarcoma patients would enter into early phase clinical trials, and response rates would 1 in 20. Today, thanks to genomic profiling, an early phase trial of a new drug can be targeted at specific patients which improves outcomes to produce a 1 in 3 response rate.

These advancements highlight the transformative potential of new treatments with timely access.

It can take up to 18 months for new therapies to become accessible and equitable.  Many patients may read about new advances, however the tragic reality is many die waiting to access these trials.

To capitalise on the potential of the improved outcomes with access to trials being targeted with genomic profiling we need to speed access to trials and new therapies.

A good example of this is the use of  Doxorubicin, which is considered gold standard treatment for soft tissue sarcomas, and has been used since the 1970’s.  As a monotherapy it has a low response rate.  It is therefore reasonable to suggest that with matched therapies leveraging genomics and targeted treatment, better results may be achieved than with the use of our current best standard of care for Soft Tissue Sarcoma.

Advancements in Pan-Tumour Drug Treatments

There has been a notable increase in pan-tumour drug treatments, which are therapies designed to target common genetic mutations found across multiple types of cancer, rather than being specific to one particular type of cancer. These treatments represent a significant advancement in the field of oncology, offering broad-spectrum results that can benefit a wide range of patients.  Currently, there are seven such treatments, with projections suggesting this number will triple by 2030.

Equitable Access and Policy Change

To address these urgent needs, there must be a concerted effort to streamline approval processes and remove barriers to clinical trial participation. Policies that expedite the Health Technology Assessment (HTA) processes, similar to those achieved during the COVID-19 pandemic, can ensure that life-saving therapies reach patients faster. Equitable access to clinical trials should be a standard of care, with concerted efforts to always identify the specific challenges of patients from rural and remote areas, and the Aboriginal Torres Strait Islander community.

Covid 19 and Expedited HTA Approval

Since 2020, rare cancers have claimed as many lives as COVID-19, and often disproportionately affecting our younger population. The expedition of treatment options through Health Technology Assessment (HTA) approval during the COVID-19 pandemic demonstrated that rapid advancements in medical treatments are possible. This experience underscores the urgent need to streamline the approval processes for cancer treatments to ensure that patients receive timely and equitable access to life-saving therapies.

Government Investment in Rare Cancers 

The Australian government has invested heavily in the research programs of Omico and sister childhood research programme, ZERO through the CCIA, to  support the provision of research, genomics and novel treatments in a sustainable and equitable manner for all Australians.

Over the past year, Omico and ZERO have supported 53 clinical trials, identifying effective drug targets in one-third of participants. Over eight years, these programmes have enrolled over 15,000 patients with incurable cancers

Conclusion

For rare cancer patients, every moment counts. The critical nature of time in accessing clinical trials cannot be overstated. By expediting approval processes, increasing awareness, and reducing barriers to participation, we can provide these patients with the best possible chance to benefit from the latest advancements in cancer treatment. The goal is to make cancer a manageable disease, one that patients can live with and thrive despite, rather than a death sentence dictated by the availability of time-sensitive therapies.

Professor Thomas and his team, together with Christine Cockburn and the RCA team are working together to emphasise the need to expedite processes through the Health Technology Assessment (HTA) as they were through Covid 19, to ensure rapid and equitable access to clinical trials and personalised therapies. Their goal is to transform cancer from a fatal disease into a manageable condition, enabling patients to live, manage, and thrive despite their diagnosis.