Submission No. 58 Date Received: 29/07/14

Submission to Parliamentary Inquiry into Skin Cancer in Australia

Melanoma • is Australia’s national cancer. It is the fourth most common form of cancer in Australian men and women (10% of all cancers). Australia has the highest incidence of melanoma in the world, with more than 12,500 new cases being diagnosed in Australia every year. One person dies from melanoma every 6 hours. • Melanoma is the most common cancer in young people (aged 15–39 years), making up 22% of all cases, and as one of the leading causes of cancer death in this age group it has a disproportionately large impact. • Prevention, early detection and treatment saves lives. Over 90% of can be cured with simple treatment, if detected early enough, and new therapies are finally making progress against metastatic disease.

Melanoma Institute Australia Melanoma Institute Australia (MIA) is a not-for-profit organisation with a mission to be the leading centre for melanoma research, clinical care and training in the world, and to use this position to lessen the impact of melanoma on the community. Having evolved from the Sydney Melanoma Unit, which was established in the 1960s, MIA is headquartered at the Poche Centre in North Sydney. This is the world’s largest centre devoted to melanoma research, treatment and education, and is affiliated with The University of Sydney, St Vincent’s and Mater Health Sydney, The Royal Prince Alfred Hospital and the Australia and New Zealand Melanoma Trials Group (ANZMTG). Each year, MIA clinicians see more than 7,500 melanoma patients from across Australia. The Poche Centre facility was made possible by the generous donation of $40 million by philanthropist Mr Greg Poche, It is a purpose-built, integrated cancer treatment facility enabling the best possible care for melanoma patients, and facilitates comprehensive research into melanoma. Through its Melanoma March campaign, MIA is a major player in melanoma awareness and prevention. Our Patients Drive Our Research Every patient that we see has the opportunity to contribute to major research assets that researchers inside and outside MIA use on a daily basis, especially the MIA Biospecimen Bank and MIA Melanoma Research Database (MRD). These resources underpin our own research programs and can be utilised by researchers all around the world and for basic and translational research into the causes,

development, diagnosis and treatment of melanoma. The MIA Melanoma Research Database is central to the success of the Institute. Initiated in the mid 1960s, it has captured comprehensive clinical and data for more than 38,700 melanoma patients. The MRD is a unique national and international resource that supports research into the full range of problems faced by patients and their clinicians, including surgical and medical oncology, pathology, , , radiation therapy and diagnostic imaging. The knowledge gained from these studies assists in the management of melanoma patients around the world and is the basis of the high standing of MIA researchers and clinicians. The MIA Biospecimen Bank is an ongoing collection of samples of tumour tissue and blood, donated for research by more than 6,000 patients so far - the largest melanoma tumour bank in the world. With the oldest samples dating back to 1999, and up to 15 years follow-up, its samples are utilised for ethically approved research into melanoma causes, development, diagnosis and treatment. Their value is largely due to the high quality information collected through the MRD on the same patients, through which molecular data can be linked to a wide variety of clinical outcomes. We maintain a high level of clinical trials activity, as the vital research link between laboratory discoveries and the availability of new surgical, radiation, drug and immune therapies. MIA is a top recruiter to clinical trials and participation rates among our patients consistently exceed cancer agency targets. We combine our clinical trials and off-trial work with a ground breaking TEAM protocol for sampling tissue from patients during treatment. These highly sought-after samples are helping us to make a unique contribution to the current wave of dramatic progress in treatment of advanced melanoma. MIA and collaborators across Australia are mid-way through a national $5m Melanoma Genome Project, supported by MIA, Bioplatforms Australia, Cancer Council NSW and the NSW Ministry of Health. The project aims to fully sequence the DNA of 500 melanoma tumours as a breakthrough contribution to personalised medicine for melanoma. The goals of this research are to understand how apparently similar melanomas can have such different clinical behaviour. These studies are showing that specific mutations, proteins and expressed genes have a strong influence on melanoma outcome and point the way to improved diagnostic tests, as well as to new targets for melanoma treatment. MIA researchers have a strong focus on understanding melanoma risk and prevention. Sun awareness campaigns over decades now have led to evidence that the tide of the melanoma epidemic is turning, but not yet enough. We have helped identify most of the genes known so far to influence risk in the community, and have pioneered specialised research clinics that are being trialled for their effectiveness in detection of melanoma in those at highest risk. Our researchers provided the evidence that led to sunbed bans across Australia.

Research Funding A team of MIA investigators from several research institutes (Westmead Millennium, Kolling), universities (Sydney, Macquarie) and hospital research hubs (RPA, Westmead, North Shore, Hunter) in NSW and the QIMR Berghofer Medical Research Institute have been supported since 2005 by prestigious NHMRC and Cancer Institute NSW Program Grants. With the support of a vibrant donor program and strong industry participation, MIA delivers approximately $10m of research output each year.

RECOMMENDATIONS

1) We recommend sustaining and improving Australia’s good record of halting the melanoma epidemic through prevention. This requires continuous research into which strategies are most effective, as the community and its attitudes change, and conversion of what we know into action, such as the successful efforts to ban sunbed use. 2) We note the value that genetic and behavioural research is adding to our understanding of personal risk of melanoma. We recommend continued research into how more precise risk assessment and specialised surveillance for those at highest risk of melanoma may improve prevention and early detection. 3) We note the powerful insights into melanoma diagnosis and treatment options that have come from basic molecular and genomic research in melanoma, which is now driving the first wave of successful treatments of advanced melanoma. We recommend strategic investment into determining the role of genomics in patient care in cancer. 4) We note the value for melanoma research and care produced by collaborative platforms for analysis of clinical data and well-characterised tissue. We recommend encouragement by all means of state- and nation- wide participation in such platforms by clinicians and researchers engaged with melanoma.