Karen is a Senior Policy Adviser with the South Australian Chamber of Commerce and Industry with a background in Workplace Relations and Advocacy. Karen’s initial diagnosis occurred in 2011 when she discovered a melanoma on her back which was excised. In Early 2013 she discovered a lump under her right arm and was referred to a surgeon for surgery followed by radiotherapy.
Within 6 months Karen’s disease had progressed to stage IV. A lack of treatment options other than chemotherapy lead Karen to research clinical trials and for the next two years Karen flew fortnightly to Melbourne to participate in the pembrolizumab arm of the phase III MK3475-006/Keynote-006 clinical trial. Within three months it was clear that Karen had responded well and gratitude led to her taking up the facilitator role for MPA in South Australia and presenting to third year medical students as part of University of Adelaide Cancer Voices Survivors as Teachers program.
Karen recalls, during her darkest moments she called Melanoma Patients Australia, which was a shoestring operation supporting patients at that point, ‘They understood in a way no one else did”. The obvious success of the drug that was to become known as Keytruda for many patients, her response and the heartache of seeing others not being able to access it led Karen to join the MPA lobby group adding her story to the written submissions to PBAC to successfully have Keytruda subsidised under the PBS within a record time.
Since then Karen was able to return to work, care for her family (the youngest at diagnosis was 4) and increase her advocacy activity in the area of access, immunotherapy and lymphoedema. She has been involved as a consumer on several committees, associate investigator in several research projects from grant application stage and has an ongoing relationship with melanoma researchers in South Australia. Karen is a Board Director for Melanoma Patients Australia and serves on the executive for Cancer Voices SA. Karen has spoken as a consumer advocate at various scientific events including Skin Cancer College Australasia 2016 and 2018, Survivorship Conference 2017, Cancer Nurses Conference 2017, World Melanoma Congress 2017, COSA 2018 and PharmAus19.
Peter has a professional background in education, project management, consumer engagement and social justice. His most recent appointment was at the Victorian Equal Opportunity and Human Rights Commission. He is also a Civil Celebrant.
Peter’s first encounter with melanoma was in 2014 when an early melanoma was excised from his back. In 2017, he discovered a suspicious lump in his right axillar and he was referred to the Peter MacCallum Cancer Centre (PMCC) for assessment and treatment of Stage 111b metastatic melanoma. Following further surgery, Peter undertook a year of immunotherapy as adjuvant therapy.
During his treatment, Peter not only learned the value of appropriate and timely support and information, but also the important role that networking and advocacy can play as he actively lobbied PBAC for the listing of Nivolumab as adjuvant therapy on the PBS.
Peter is passionate about empowering and harnessing the consumer voice and ensuring it is heard at all stages of treatment, research and policy development. Peter is currently a member of Melanoma Research Victoria’s Consumer Reference Group and is an active member of PMCC’s Consumer Register.
Denise is an Insurance Manager with expertise in Self Insurance and Workplace Injury, with 25 years’ experience within Local Government, State Government and Private Enterprise. Held National Manager roles with Asciano, NSW Police Force and Australia Post and currently works as the Group Workers Compensation Manager for Woolworths Group. Denise has an MBA and is currently completing a Law Diploma with the University of Sydney.
Denise noticed a changing spot on her thigh above her knee and was surprised by her trusted GP dismissal of the spot. Through persistence she sought investigation and was diagnosed with Malignant Melanoma with associated superficial spreading melanoma in situ, to her left thigh in 2017. Surgery occurred within two weeks where the melanoma was excised and she has regular quarterly checks with the Poche Centre, Maher Private Hospital.
She is a strong advocate for self-awareness of changing personal circumstances and has spoken at a number of Workplace Wellbeing Forums on the importance of early detection for melanoma.
Kerryn Jones is a Speech Pathologist with experience working in state education and private practice across a range of regions.
Kerryn grew up in the ‘slip slop slap’ era in the Australian climate. Despite sun safety measures Kerryn noticed a small mole change (flaking) at age 19, an in situ melanoma. Approximately 10 years later, Kerryn had a Stage I melanoma on the same leg. Kerryn followed all recommendations and undertook regular 3-monthly skin and lymph node checks plus additional surveillance. Exactly 12 months later, and 1 month after her most recent skin check, Kerryn suddenly had a small but painful lump develop in her thigh but no skin lesion, with lymph nodes later becoming inflamed. Scans led to diagnosis of Stage IIIC metastatic melanoma, for which she underwent surgery and 12 months of adjuvant immunotherapy infusions by compassionate access (before the drug was made available through the PBS).
Kerryn has connected with many other melanoma survivors through MPA, and advocated for melanoma and sun safety awareness through her personal and professional networks. She regularly advocates for improved healthcare access and evidence-based treatments through her professional role and personal conversations. Kerryn firmly believes in everyone being valued and having their voice heard, and actively participating in their healthcare decisions. She wishes to increase awareness of melanoma and improve consumer care and melanoma prevention. Kerryn has a particular interest in advocating for improved health outcomes for younger people.