Consumer Advisory Panel
The Consumer Advisory Panel (CAP) provides ANZUP with invaluable advice on specific studies, general research directions and priorities from a consumer perspective. The CAP also provides a conduit for communication from ANZUP back to the community in order to promote research and engage community support.
Each CAP member brings their own cancer experience, professional expertise, networks, advocacy knowledge and a dedication to the clinical trials research process. Members participate on various ANZUP committees and contribute to many prostate, bladder, kidney, penile and testicular cancer research, advocacy, support and fundraising projects.
Belinda Jago, Chair
Belinda Jago has been the Chair of the ANZUP Consumer Advisory Panel (CAP) since 2013. Belinda professionally has worked in human resources in a variety of operational and strategic HR roles after completing a Bachelor of Business in 1981. Belinda’s interest in ANZUP stems from her role as a carer for her daughter who was diagnosed with kidney cancer in 2006 at the early age of 13. Volunteering with ANZUP since 2012 has provided an opportunity for Belinda to share the knowledge and skills she has acquired during her family’s experience and to pursue her passion for assisting cancer patients, their carers and families, with a particular interest in kidney and Adolescent and Young Adults (AYA) cancers and clinical trial research.
Ray Allen, Deputy Chair
Ray is in his 60’s, and has moved on from his working career. He doesn’t use the word retired and prefers to describe himself as ‘getting on with life’. He spent almost his entire working career in the commercial property industry with the last 20 years in property related investment banking and funds management. He resisted all invitations to ‘suit-up’ and return to the boardroom. Ray believes there is so much else to be done. He ascribes to a doctrine of enabling. He’s a very keen follower of the performing arts, with a particular leaning to opera and classical music. With a personal commitment to engaging youth with opera he assists the students and staff of a regional Conservatorium of Music to stage an annual, full opera production involving young people. A few years back, Ray was diagnosed with prostate cancer and subsequently had a radical prostatectomy. He said it was certainly a life changer and so far so good. He doesn’t shy away from talking about the disease, its diagnosis, consequences, and management. His involvement over the past few years with ANZUP has been a great opportunity to channel his experience to help others and to increase community awareness and encourage participation in valuable clinical trials.
Mr Joe Esposito is a Melbourne based director who has recently established a business consultancy practice, Grumentum Capital Pty Ltd. For 8 years until 2020, he owned and operated a BOQ (Bank of Queensland) branch in the inner city suburb of Collingwood. He has had over 20 years experience in corporate banking in Australia and New Zealand. Between 2003 and 2006 he was the CEO of ASX listed Jetset Travelworld Limited. Mr Esposito has a close affinity with the objectives of ANZUP and the needs of cancer consumers. His qualifications include a Bachelor of Commerce, a Master of Applied Finance and a Diploma in Finance and Mortgage Management. He is a graduate member of the Australian Institute of Company Directors.
Leonie Young has been a member of the ANZUP CAP since 2017 and a supporter and mentor for the CAP since 2012. She was diagnosed with breast cancer in 1987 and through her family, has personal experience and understanding of other cancers including prostate cancer. Since her diagnosis she has been involved with many aspects of cancer consumer advocacy, support, training, and mentoring and contributes in numerous research initiatives as an experienced consumer representative with researchers both nationally and internationally. She regularly presents at conferences concerning topics relating to the lived experience. She is the Peer Support Coordinator for the Wesley Hospital Choices Cancer Support Centre (Choices) in Brisbane and an inaugural member and immediate past Chair of the Breast Cancer Trials Consumer Advisory Panel. Leonie is the recipient of an Honorary Degree of Doctor of the University, Griffith University, Brisbane and the Reach to Recovery International Terese Lasser Award both in recognition of distinguished service to the community, particularly as an advocate for people diagnosed with cancer.
Colin O’Brien was diagnosed with prostate cancer in 2005 and since then has been actively involved as a consumer advocate with numerous cancer committees that include the Victorian government’s Department of Health Cancer Quality Outcomes Committee, Prostate Cancer Outcomes Registry Steering Committee and Cancer Vic Cancer Registry. He has 40 years-experience in small business as an owner, business advisor, workshop developer and presenter, and as EO of Australia’s largest network of small business providers. He has a strong interest in improved benchmarking regarding the treatment, care and outcomes for cancer patients as they journey through the health care system. Taking time out from his business he has completed small business volunteer assignments in Thailand, Solomon Islands, Fiji, Papua New Guinea, Vanuatu and Bali, Indonesia. Passions include sharing a good meal and wine with family and friends, travel (in particular Canada) and competitive mountain biking.
Les worked originally in the public service before joining the motor industry and was employed in management positions. He is now fully retired. In about January 2010 Les went to his GP with a sore left shoulder blade. Tests revealed something in the kidney area. He was referred to a urologist, had a biopsy and the same procedure carried out some 5 months later. Dr Coombes, the surgeon, then removed his left kidney as the biopsy had shown growth and was deemed cancerous. Dr Coombes referred Les to Martin Stockler who put him into the Sorefanib trial program. He stayed with the medication for the full 3 years with a few ups and downs with side effects. Les attended every 6 months for blood tests, chest x rays or whatever the protocol dictated until the trial closed. He started the trial from a selfish point of view knowing they’d look after me extremely well. The more he got involved the more he thought about other people who might be diagnosed just like himself, perhaps someone 30 years of age with a couple of children. He is glad that he might have now helped them.
Melissa Le Mesurier
Melissa Le Mesurier, originally trained as a journalist, has 25 years’ experience as a senior corporate affairs executive with blue-chip organisations such as Medibank, Kraft/Cadbury, Foster’s Group and Australian Airlines. She is currently the Principal of MLM Consulting which advises executives and boards on strategy, reputation, cultural change and communications. Both professionally and personally, Melissa is passionate about medical research, consumer engagement and patient empowerment – something sparked when her (now adult) son was diagnosed with cystic fibrosis in 1996 and strengthened when she was diagnosed with bladder cancer in 2017. She is a Graduate of the Australian Institute of Company Directors and a Director of the Lung Foundation Australia. She was previously a member of the Alfred Hospital’s CF Consumer Advisory Panel and founding Chair of the Royal Children’s Hospital Cystic Fibrosis Research Trust (1999-2009) which has raised more than $3m for research and funded about 20 clinical fellows.
Michael is in his late 50’s, lives in Victoria, is married with 3 adult children and 5 grandchildren. He has a trade background and 20 years of experience managing the local office of an industrial electronics equipment supply company. Life was about family, running, work and the motor sport club. Michael was quite healthy until his diagnosis with advanced bladder cancer in January 2017. It was only a few weeks from the initial tell-tale signs of disease to his diagnosis and then treatment. Priorities have changed a little in the past few years with family becoming his number one focus. He spends more time now with family, has enjoyed a few holidays post treatment (to NZ, SA, WA to name a few). Michael has a renewed focus on improving his fitness, post treatment - which hopefully will assist with fending off any recurrence of cancer. Running a 100km trail run on the Victorian surf coast had been his goal for 2017. He was able to complete an endurance challenge in 2018. Being part of an ongoing bladder cancer trial also opened up a new avenue of interest, and opportunities to make a difference. Michael has been able to raise funds in support of the work ANZUP does to improve outcomes. He was introduced to ANZUP by his clinical trials nurse and even though he wasn’t on an ANZUP trial, he understood what this dynamic organisation was aiming to achieve. He had no idea what he could contribute to the CAP when nominated, and at some meetings he still wonders! Michael hopes to contribute for a long time to come and to help encourage more bladder cancer research and trial development through his participation at ANZUP.
Tuan is an engineer by training, that led to a 35-year IT career partly overseas (Bangladesh, Nepal, Thailand, Malaysia, Singapore, Vietnam and Fiji) and partly within the Australian Telco industry. Diagnosed with prostate cancer in 2018, Tuan has been going through systemic treatments ever since. He is enthusiastic in raising awareness among the growing high-risk group of 50-plus men - utilising knowledge that will serve to alleviate the cancer burden and saving life with early detection. Tuan is now semi-retired, he has worked as a consultant to complete a new Care-Manager Portal for Sequel Home Care Management in Heidelberg. Besides that, Tuan is busy volunteering in the Scouts Movement (ex District Commissioner) and is a freelance IT service provider for the Vietnamese community 50-Up.
Paul Zawa was born in Chicago and immigrated to Australia in January 1986. He is married with two children. Paul is currently a Principal Lawyer at Phi Finney McDonald (PFM), which he joined in August 2018. His personal experience with cancer began with his mother, who died of lymphoma at the age of 71. His brother, 10 years his senior, was diagnosed with prostate cancer at 48 and had a radical prostatectomy. Consequently, Paul has been monitoring his PSA since the age of 38. Despite his family history, his health was reasonably good, so it came as a shock to be diagnosed with stage 2 testicular cancer at the end of 2018 at the age of 61, an unusual age for that disease. He was at stage 2 because a tumour had been located in his chest cavity. Following an orchiectomy (right), he commenced chemotherapy at the Peter MacCallum Cancer Centre in the first calendar quarter of 2019. Unfortunately, the chemotherapy did not shrink the tumour enough, and he underwent a retroperitoneal lymph node dissection in June of 2019 to remove the tumour and confirm the cancer had not spread. The tumour was completely dead tissue, and the cancer did not appear to have spread to any lymph nodes. To quote one of his doctors, ‘he was 99.9% cured’. During one of Paul’s recent check-ups with his oncologist, Dr Ben Tran, he was discussing what a positive emotional experience he had at Peter MacCallum as a result of the amazing support of the staff there. He told Ben that he has always believed in "putting something back" to the community and was curious about what avenues there might be at Peter MacCallum, or elsewhere, to assist with cancer patients and treatment. As a result of that conversation, Ben put Paul in touch with ANZUP, suggesting a role on the Consumer Advisory Panel, based on his experience.
Juliet De Nittis
Juliet De Nittis was diagnosed at 50 with a rare aggressive kidney cancer in 2019. After surgery to remove her left kidney, and the tumour that covered it, came the revelation that the cancer had spread to her lungs. That is when the enormity of her situation struck. Rare kidney cancer had no treatment, leading to a shaort life expectancy with palliative care. Fortunately, hope arrived; an ANZUP clinical trial led by Associate Professor David Pook for rare kidney cancers. Now, incredibly after two years of immunotherapy treatment and another two years treatment free, her cancer continues to be in remission, stable and the latest scan revealed: "lungs clear!". Juliet knows she would not be here without the immunotherapy treatment she received from an ANZUP clinical trial. Juliet is a success story and is profoundly grateful to pay it forward after becoming a member of the ANZUP Consumer Advisory Panel in 2022. Juliet considers it an absolute privilege to be a part of an inspiring team dedicated to improving pathways and outcomes for all patients. Juliet plans to utilise her lived experience to work with the CAP team to raise awareness of access to clinical trials and to facilitate greater patient involvement in treatment choices.
Raewyn Manssen lives in Auckland and works as a Life and Disability insurance adviser. Raewyn’s company is a mutual society that was started by doctors 100 years ago to provide insurance and investment solutions to doctors, dentists and vets. The mission is to inspire a healthier New Zealand and the company has a charitable foundation that focuses on this. Raewyn joined the company 3 years ago as she felt it aligned perfectly with her values. She says the employees are supported to volunteer our time to assist also. Raewyn is a mum to 2 children who are now young adults and starting out in their careers. Apart from their births Raewyn had no hospital stays prior to being diagnosed with bladder cancer in July 2021. The treatment she was offered is the gold standard and, she believes, has been the same for the last 40 years. Raewyn was invited to join a clinical trial. She was assigned to the ‘control’ group, but was very happy that she had a complete response to the chemo and subsequent surgery. However, the prospect of contributing to a better treatment regime or outcome for future sufferers piqued her interest in medical research. When she was diagnosed, Raewyn joined a Facebook group for Women with Bladder Cancer. These are women around the world and for some the diagnosis was delayed due to either them or their health providers not seeing their symptoms as potential cancer. Hearing these women’s stories, Raewyn has realised the importance of raising awareness and empowering patients to advocate for themselves.