The Canberra Forum is an initiative of Rare Cancers Australia. Designed to challenge the way

we think about cancer in relation to policy development, treatment, funding and research.

It explores innovative solutions and encourages out of the box thinking to achieve action that

will improve the lives and outcomes of Australians living with rare and less common cancers.

Beyond common thinking

DISRUPTING CANCER

The Canberra Forum 2016

New technologies inside and outside the cancer community

Equity in access to treatment for rare cancer

patients: challenges and opportunities

Using genetics and genomics to disrupt cancer

The need and opportunities to disrupt cancer Dr Joanna Batstone

Vice President and Lab Director, Research, IBM Australia

Dr Mark Pinese Senior Research Officer,

Genomic Cancer Medicine, Garvan Institute of Medical Research

Professor Michael Boyer AM Chief Clinical Officer, Lifehouse

Professor David Goldstein Department of Medical Oncology, Prince of Wales Hospital

Professor Andrew Wilson Chair, PBAC

Richard Vines Founder and Chairman, Rare Cancers Australia

Professor Sandra O’Toole Head of Molecular Oncology, RPA

Tiffany Boughtwood Program Manager, Australian Genomics Health Alliance

DAY 1 Tuesday 18 October, Parliament House Canberra

Featuring Keynote Address by

R a re C a n c e r s A u s t r a l i a | P O B o x 4 4 0 , B o w r a l N S W 2 5 7 6 | 0 2 4 8 6 2 2 7 6 8 | w w w . r a re c a n c e r s . o rg . a u

The Hon. Sussan Ley MPMinister for Health and Aged Care, Minister for Sport

Event Media Partner

Join the conversation using #CanForum #RareCancers @RareCancers @RareCancersAustralia @RareCancers rare-cancers-australia

Event MC

Sophie Scott National Medical Reporter ABC, Author and Presenter

Sophie is an award winning journalist and presenter. She has written two books; Live a Longer Life and Road Testing Happiness. Subscribe to her popular blog on health and happiness at www.SophieScott.com.au.

The Canberra Forum 2016

Beyond common thinking

DISRUPTING CANCER

Speakers

Dr Joanna Batstone

Vice President and Lab Director, Research, IBM AustraliaDr Joanna Batstone has held numerous technical and executive roles in IBM’s services and software businesses. More than half of Joanna’s career in IBM has been in Research; as a Director at the TJ Watson Research Centre in New York and now as the Vice President and Lab Director for IBM Research here in Australia. Joanna is also the Chief Technology Officer for IBM A/NZ. Joanna has published over 80 papers, organised many industry conference symposia and is a popular keynote speaker at events around the world. Most recently, Joanna was announced as Honorary Enterprise Professor at University of Melbourne.

Tiffany Boughtwood

Program Manager, Australian Genomics Health AllianceTiffany Boughtwood has 20 years experience in molecular diagnostics and led a NATA-accredited genomic facility at the University of Melbourne for over a decade. Tiffany is the Program Manager of the Australian

Genomics Health Alliance, leading the National Coordination Team and managing the implementation of the $25M NHMRC research program into ‘Preparing Australia for Genomic Medicine’.

Professor Michael Boyer AM

Chief Clinical Officer, LifehouseFollowing a distinguished career in Canada and Australia, Professor Boyer joined Chris O’Brien Lifehouse in 2013. In addition to his clinical roles, he has held senior administrative positions during that time including Head of Department of Medical Oncology at Royal Prince Alfred Hospital, Director of the Sydney Cancer Centre, and Area Director of Cancer Services for the Sydney South West Area Health Service. He is the author of over 145 publications and has given numerous national and international presentations.

Professor David Goldstein

Department of Medical Oncology, Prince of Wales HospitalProfessor Goldstein specialises in gastrointestinal malignancies and in particular the less common ones. He is the Director of the UNSW Cancer

Institute Funded Translational Research Centre and is the Adult Program Director of the UNSW Cancer Survivors Centre.

Bruce Goodwin

Managing Director, Janssen Australia and New ZealandIn January 2016, Bruce was appointed as Managing Director of Janssen Australia and New Zealand (ANZ), after serving as President of Janssen Japan for three years. In Japan, he launched a number of innovative medicines in areas of high unmet medical need. Bruce also served for two years as Vice Chair of a Japan-based executive committee of the Pharmaceutical Research and Manufacturers of America (PhRMA) and played a key role in advocating for policies that support timely and affordable access to innovative medicines.

Professor Sandra O’Toole

Head of Molecular Oncology, RPAA senior staff specialist at Royal Prince Alfred Hospital, Sandra is head of Molecular Diagnostic Oncology, a cutting edge, innovative NATA accredited clinical service offering multigene mutation profiling of patients with a range of

malignancies. A leading diagnostic molecular pathologists in Australia, Sandra also serves on a number of government, professional and industry advisory boards. She is the chair of the Cancer Services Advisory Committee of the Royal College of Pathologists of Australasia (RCPA), Group Leader of the Translational Breast Cancer Research at the Kinghorn Cancer Centre at the Garvan Institute of Medical Research and is a National Breast Cancer Foundation Practitioner Fellow.

Dr Mark Pinese

Senior Research Officer, Genomic Cancer Medicine, Garvan Institute of Medical ResearchDr Pinese completed his undergraduate studies at UNSW Australia on the biology of ageing, for which he was awarded the University Medal, before moving to the Garvan Institute to pursue cancer research. At the Garvan Institute, Dr Pinese was a member of the world’s largest sequencing effort in pancreatic cancer and for his work, received a PhD on the molecular determinants of survival of patients with pancreatic adenocarcinoma. Dr Pinese then joined the Kinghorn Centre for Clinical Genomics, where he performed rapid-turnaround genomic analysis for cancer patients and helped to develop Australia’s first clinically-accredited whole genome sequencing test for rare disease.

Keynote Speaker

The Hon. Sussan Ley MP Minister for Health and Aged Care, Minister for Sport

Sussan Ley’s career path has been wonderfully varied, with odd jobs on the way to a pilot’s license, with roles as an air traffic controller, stock-mustering pilot and occasional shearer’s cook following. While raising three children on a family farm, ten years study led to a senior position at the Australian Taxation Office before entering politics.

Representing the electorate of Farrer in western NSW since 2001, on the re-election of the Coalition Government Sussan was appointed to the Ministry, taking on the Health and Sport portfolios from December 2014, with responsibility for Aged Care added in September 2015.

DISRUPTING CANCER

Associate Professor Clare Scott MBBS PhD FRACP

Cancer Council Victoria Sir Edward Dunlop Research Fellow, Walter & Eliza Hall Institute of Medical Research

Associate Professor Clare Scott is a medical oncologist at the Royal Melbourne Hospital and Petermac and a Laboratory Head at the Walter & Eliza Hall Institute of Medical Research (WEHI). In the lab, she studies ovarian cancers and other rare cancers in novel cancer models, particularly from the perspective of “matching” the wiring of a patient’s cancer to treatment. She is Principal Investigator of CART-WHEEL.org, the Center of Analysis of Rare Tumors, the first ethically approved, web-based register for consumer data entry for patients with rare tumors, based at the Royal Melbourne Hospital under the auspices of BioGrid Australia. She is Joint PI of the Stafford Fox Rare Cancer Program at WEHI and Chair of the Rare Cancers group of the Clinical Oncology Society of Australia (COSA). Awards include a Clinical Fellowship from the Victorian Cancer Agency (2011) and the Sir Edward Dunlop Cancer Research Fellow from the Cancer Council Victoria (2012-2016).

Senator Rachel Siewert

Senator for Western Australia, Australian Greens PartySenator Rachel Siewert has been in Parliament for over ten years, making her the most experienced MP of the Australian Greens. Rachel was chair of the Community Affairs inquiry into the Availability of New, Innovative and Specialist Cancer Drugs in Australia. She has just been reappointed as Chair to the Community Affairs Committee.Her portfolios include Family and Community Services, Disability, Ageing, Mental Health and Aboriginal and Torres Strait Islander Issues. Rachel is the Australian Greens Whip. Rachel’s position as chair of the Senate Community Affairs References Committee has allowed her to bring light to landmark issues such as; suicide prevention, hearing health, income inequality, forced adoptions and out of home care.

Kate Vines Founder and Head of Patient Care, Rare Cancers AustraliaKate was born and educated in New Zealand and moved to Australia at age 17. After initial roles in sales and marketing, Kate spent 15 years with Sydney

Automotive Paints, the last six of those as Marketing Manager. In 1991 Kate was diagnosed with a rare Medullary Thyroid Cancer and was forced to take an extended break from work. In 2000, Kate established her own event company promoting motivational speakers in Australia. Kate successfully ran this business until 2006. In the following years, Kate worked at the Australian Retailers Association and also at Progressive Business. In 2012, Kate together with husband Richard Vines, formed Rare Cancers Australia.As Founder and Head of Patient Care, Kate’s main role is to provide support, guidance and information for patients and their families. Kate works diligently with government, clinicians and industry to ensure that rare cancer patients voices are heard and advocates for change to ensure patient needs are met.

Richard Vines

Founder and Chairman, Rare Cancers Australia Richard attended University of Melbourne where he studied Maths and Statistics. He then trained as an Actuary but was seduced by the fledgling IT industry before qualifying. After several years working in software development, Richard formed his own software company which he then sold in 1990 before embarking on

a second software venture in Europe. In 1996, Richard returned to Australia where he was retained by an American company to establish a sales channel in Australia. In 2001 Richard left the IT industry and worked in a number of not-for-profits associated with retail, politics and health. In 2012 Richard and his wife Kate established Rare Cancers Australia, a patient advocacy group whose mission is to improve the lives and outcomes for rare cancer patients. Richard is now a highly sort after spokesperson for cancer patient advocacy issues and is a member of a number of committees. In September this year, Richard was named Co-Chair of the Cancer Drugs Alliance Committee, a stakeholder coalition tasked to promote timely access to drugs for cancer patients.

Professor Andrew Wilson Chair, PBAC

Professor Wilson is Chair of the Pharmaceutical Benefits Advisory Committee for the Australian Government Department of Health, Co-Director of the Menzies Centre for Health Policy (University of Sydney node), Director of the NHMRC Australian Prevention Partnership Centre (Sax Institute) and Professor of Public Health and Clinical Medicine, and a PhD in epidemiology.

6.30pm The Patient Voice Initiative Dinner Old Parliament House 18 King George Terrace, Parkes, ACT Members Dining Room

Featuring Keynote Address by Senator Richard Di Natale Leader of the Australian Greens, Senator for Victoria, and Greens spokesperson on Health, Sport and Multiculturalism

Ord

er o

f Pro

ce

ed

ing

sO

rde

r of P

roc

ee

din

gs

Ord

er o

f Pro

ce

ed

ing

s

8.45am – 9.05am REGISTRATIONS

9.10am – 9.20am Welcome by MC Sophie Scott Opening Address Kate Vines Founder and Head of Patient Care, Rare Cancers Australia

9.25am – 10.15am THE NEED AND OPPORTUNITIES TO DISRUPT CANCER Professor Michael Boyer AM Chief Clinical Officer, Lifehouse Professor David Goldstein Department of Medical Oncology, Prince of Wales Hospital

10.20am – 10.35am MORNING TEA

10.40am – 11.30am NEW TECHNOLOGIES INSIDE AND OUTSIDE THE CANCER COMMUNITY Dr Joanna Batstone Vice President and Lab Director, Research, IBM Australia

Dr Mark Pinese Senior Research Officer, Genomic Cancer Medicine, Garvan Institute

11.35am – 12.00pm KEYNOTE ADDRESS The Hon. Sussan Ley, MP Minister for Health and Aged Care, Minister for Sport

12.05pm – 1.00pm LUNCH

1.05pm – 1.55pm USING GENETICS AND GENOMICS TO DISRUPT CANCER Professor Sandra O’Toole Head of Molecular Oncology, RPA

Tiffany Boughtwood Program Manager, Australian Genomics Health Alliance

2.00pm – 2.50pm EQUITY IN ACCESS TO TREATMENT FOR RARE CANCER PATIENTS: CHALLENGES AND OPPORTUNITIES

Professor Andrew Wilson Chair, PBAC Richard Vines Founder and Chairman, Rare Cancers Australia

2.55pm – 3.15pm AFTERNOON TEA

3.15pm – 4.30pm Q&A PANEL Facilitated by Sophie Scott

PANEL MEMBERSProfessor Michael Boyer AM Chief Clinical Officer, LifehouseProfessor David Goldstein Department of Medical Oncology, Prince of Wales Hospital Bruce Goodwin Managing Director, Janssen Australia and New Zealand Associate Professor Clare Scott Cancer Council Victoria Sir Edward Dunlop Research Fellow, Walter & Eliza Hall Institute of Medical ResearchSenator Rachel Siewert Senator for Western Australia, Australian Greens PartyRichard Vines Founder and Chairman, Rare Cancers Australia Professor Andrew Wilson Chair, PBAC

4.30pm Closing Address MC Sophie Scott

R a re C a n c e r s A u s t r a l i a | P O B o x 4 4 0 , B o w r a l N S W 2 5 7 6 | 0 2 4 8 6 2 2 7 6 8 | w w w . r a re c a n c e r s . o rg . a u

Join the conversation using #CanForum #RareCancers @RareCancers @RareCancersAustralia @RareCancers rare-cancers-australia

*Dinner is for attendees who have also registered to attend Day 2: The Patient Voice Initiative (please note that pre-registration for this dinner was required)