Message to Members - Cancer Voices NSW

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Message to Members - Cancer Voices NSW
Newsletter No. 80
     December 2020

Message to Members
We finish 2020, our 20th anniversary year, with our 80th         The development of the fifth NSW Cancer Plan continues
edition, and a bumper issue it is. Our library of                with the completion of three months of extensive
newsletters is our record of activity and is consulted           consultation involving over 650 individuals representing
regularly. We have drawn on past issues to provide               many stakeholders across the cancer and health
context and background for various issues in this edition.       continuum. (P4).
                                                                 This year, in response to the challenges brought on by
This time last year we were in the grip of a devastating         COVID–19, the annual NSW Premier’s Research Awards
fire season and drought which was followed by floods.            were hosted online by the Cancer Institute NSW, with
As if that wasn’t enough to contend with, we were then           one award announced every day on social media from
confronted with a global pandemic. The year has                  23–27 November. (P16).
undoubtedly been challenging and will be one for the
record books. It has affected everyone everywhere and            At a national level, Cancer Voices has had a full year
                                                                 working with the Prostate Cancer Foundation Australia
everything that we do, forcing us to adapt and innovate.
                                                                 on a revamp of resources (P19) and the development of
If we have made it through 2020, we can do anything! A
                                                                 a survivorship framework (P18); has endorsed the
whole new language has developed and has become                  Cancer Survivorship Care Consensus statement (P17)
normalised. New phrases, terminologies, words and                and has continued with its involvement with the Cancer
behaviours have become commonplace: social                       Council Australia collaboration of cancer organisations.
distancing of 1.5m, so many people per 2 or 4 square             November saw the launch by Dr Brendon Murphy of the
metres, lockdowns, clusters, isolation, border closures,         Consumers Health Forum Consumers Commission
wearing masks, PPEs, hand sanitisers and hand washing,           report, Making Health Better Together (P21), and the
COVID testing, working from home, restricted numbers             Standard for Informed Financial Consent was
for events and gatherings, COVIDSafe, online and hybrid          launched by Cancer Council Australia (P17).
meetings using Zoom (in some cases being ‘Zoomed
out’) and other platforms became the new norm to                 Our report, Genetic Testing, the fourth in our Special
replace face to face meetings and larger events to               Report series, looks at genetic/genomic testing and how
                                                                 it could impact on a person’s health outcomes, and on
enable our work and lives to continue. Phrases
                                                                 the role of the genetic counsellor. Full report P13-15.
commonly heard included ‘You are on mute’ and ‘Turn
on your video’.                                                  Our AGM in scheduled for February, details P2. The
One of the major COVID legacies for health is telehealth.        Nomination Form and our Issues Form can be found on
On 27 November Minister Hunt announced that                      P24-25. Do give consideration to the Issues Form which
‘widespread telehealth will become a permanent part of           assists in informing our advocacy focus and direction.
Australian healthcare with further details to be available
in early 2021.’                                                  Just as we were cautiously looking forward to Christmas
https://www.health.gov.au/ministers/the-hon-greg-                COVID has reared its head and thrown plans and
hunt-mp/media/doorstop-interview-on-27-november-                 arrangements in the air across the country. Complacency
2020. However, a negative impact has been on                     is our biggest enemy. We still need to be vigilant as we
researchers with funding sources becoming scarce.                are still in the grips of a global pandemic. We thank all
                                                                 those in health who have worked tirelessly throughout
As part of the continuing focus on the impact of the             2020 to both care for and keep people safe.
unprecedented bushfires in Australia and particularly
New South Wales in 2020 and 2021, Cancer Voices has              Our best wishes to all for a safe and peaceful festive and
sent letters to the Minister for Health, the Resilience          holiday season. We now look to 2021, to the challenges
NSW Commissioner, and the NSW Rural Fire Service                 and the opportunities. Take care and stay safe.
Commissioner regarding a mobile health monitoring                                                Elisabeth Kochman (Chair)
service (P4).                                                                                  and the CVN Executive Team

Newsletter No 80 December 2020                     Published by Cancer Voices NSW Inc                             Page | 1
Message to Members - Cancer Voices NSW
4 February 2021, World Cancer Day: I am I will
                                  Together all our actions matter
                                https://www.worldcancerday.org/

                            NOTICE OF ANNUAL GENERAL MEETING 2021
           Cancer Voices NSW Inc. invites you to attend its AGM on Friday 19 February 2020 at 9.30am,

                                          Level 1, 280 Pitt Street Sydney.

                     Nominations for the Executive Committee and Office Bearers are invited.

       Nominees should be supported by their voting member, cancer support or advocacy group on the
                       Nomination Form provided with this Newsletter, see Page 24.

              Please complete and mail to PO Box 713, Milsons Point NSW 1565 or scan and email to
                                info@cancervoices.org,au by 12 February 2021.

   If you are interested in working with CVN’s Executive Committee, we encourage you to contact us ASAP.

                          We welcome all Cancer Voices Members to attend the meeting.

                      If you plan to attend the AGM, please advise us by 12 February 2021.

             Final arrangements will be made closer to time depending on COVIDSafe requirements .
                Our annual report will be tabled at the AGM and will then be available on our website.

                         COSA Survivorship Conference, 18-19 March 2021
   The 5th national Cancer Survivorship Conference will be a hybrid meeting, online and face to face.
   The face to face components of the conference will be held at the Adelaide Convention Centre.

                     Themed “LIFE AFTER CANCER – REDEFINED, REIMAGINED AND REBUILT

                             Visit the website at https://www.survivorship2021.org/

                           CHF Virtual Summit 2021: Shifting Gears
     andAustralia and New Zealand Consumer Experience and Leadership in Health
                                                     Summit
  Australasia’s first consumer health summit in March 2021 will be virtual, putting this high impact
  event in reach of a wider audience within Australia, New Zealand and worldwide.

  The CHF Summit 2021: Shifting Gears draws together consumers and other leaders from the health
  sector. We will explore the latest research and developments which drive the health system towards a
  consumer-centred culture and services. The spotlight will be on how consumers play an important
  part in health policy, research and care design.

  What’s the theme?

  Consumers as leaders in healthcare will be a central theme of this first Australian and New Zealand
  Consumer Experience and Leadership in Health Summit.

  View the Summit website: http://www.chfsummit.com.au/
  See the Summit poster

2 | Page                              www.cancervoices.org.au                          the Voice of People Affected by Cancer
CVN Committee News
 Our last EC meeting was 24 November, with a follow up              Recent representative appointments
 1 December to complete unfinished business due to a                Cancer Voices continues to provide nominees on request
 guest presentation. *The CIR Review Steering                       by stakeholders. These requests are usually made by
 Committee met on 20 November and 3 December,                       cancer professional organisations, government agencies
 further details P10. *We have some role changes within             and health service planners. Recent appointments
 our CIR Program, details P8. *Planning is underway for             include:
 our AGM and EC workshop in February along with                     Cancer Australia (CA) - National Pancreatic Cancer
 several conference presentations. *Our diaries are                 Roadmap Steering Group.
 already beginning to fill with commitments for 2021.               Cancer Voices member Gino Iori was appointed to the
Special thanks!                                                     CA National Pancreatic Cancer Roadmaps Steering Group
Once again, we extend a big thank you to Geoff Vass,                in October. This Group will provide CA with strategic,
from Cadzow TECH, who continues to provide pro bono                 high level expert advice related to the development of a
support on matters IT and to Sandra O’Sullivan for                  National Pancreatic Cancer Roadmap (the Roadmap).
matters financial. We are grateful for all the support,             The Roadmap will improve outcomes for people affected
assistance and advice provided by both.                             by pancreatic cancer through the identification of key
                                                                    priority areas for action over the next five years to guide
Vale – Chris Christensen
                                                                    evidence-based pancreatic cancer research and best
We were saddened to hear the news of the
                                                                                        practice cancer care.
passing of our Cancer Voices SA (CVSA)
                                                                                        Health Consumers NSW Board
friend and colleague, Chris Christensen on
                                                                                        We are delighted to announce that
31 October 2020. Several CVN members
                                                                                        the CVN nomination of Murray
joined her moving farewell online on 12
                                                                                        McLachlan had been successful and
November. Chris was Chair of CVSA. She
                                                                                        that the announcement of his
showed amazing tenacity and
                                                                                        appointment to the HCNSW board
determination and used her own scenario
                                                                                        was made at the HCNSW AGM held
for the betterment of those affected by
                                                                                        16 October via Zoom. John Garbutt,
cancer. A shining light and inspiration to all.
                                                                                        Chair HCNSW Board, and Neil Fraser,
To quote her colleague, friend and former
                                                                                        Deputy Chair, were also reappointed.
chair, Julie Marker, ‘she has worked to
                                                                                        HCNSW Board terms are for three
improve health policies, health service             Chris Christensen (left) and        years. There were 23 attendees
delivery and research activities spanning               Julie Marker, CVSA
                                                                                        including three Cancer Voices
the cancer pathway.’
                                                                    members.
Chris was diagnosed with primary peritoneal cancer in               Congratulations Murray, this gives us a voice for cancer
2010. She joined CVSA in 2013 and became chair in                   and health services in NSW through our state consumer
2017. Chris was highly regarded and will be missed by all           organisation. HCNSW 2020 Annual Report is available at
who knew her.                                                       https://www.hcnsw.org.au/news-
On 3 December, we were delighted to hear the COSA                   resources/publications/
announcement of the Ashleigh Moore Award. ‘In                       Cardio-oncology
recognition of the award Julie Marker, past Chair of                Though well established in the US and Europe for some
Cancer Voices SA will deliver an oration “Survivors and             time, cardio oncology is a new field in Australia. Lee
leadership reimagined: " including a tribute to the                 Hunt has joined a special interest group which includes
advocacy role of Chris Christensen at the COSA                      cardiologists, pharmacists, medical oncologists, radiation
Survivorship Conference in March 2021 in Adelaide. See              oncologists and researchers. Another of our CIR
Page 2 for details.                                                 consumer community, Jacqueline Lesage from Victoria,
                                                                    has taken on the consumer role in several cardiotoxicity
                                                                    projects.

 Tribute to a cancer advocate
 Karen Benn: a great example of what an advocate can accomplish
 “Karen’s wit, beauty, and dedication to breast cancer advocacy will be greatly missed, but never forgotten. Her life
 and career serve as an example of what an advocate can be and what an advocate can accomplish on behalf of
 others. I think that is what she would want us to remember the most.”
 https://cancerworld.net/obituary/karen-benn-a-great-example-of-what-an-advocate-can-
 accomplish/?utm_source=Newsletter&utm_medium=Email&utm_campaign=23Sep

Newsletter No 80 December 2020                      Published by Cancer Voices NSW Inc                                Page | 3
Consumer Advocacy Update

                                                              clinicians, improved health outcomes for the
Can we persuade the NSW Government to establish a
                                                              population and improved cost efficiency of the health
‘Firies Bus’?
                                                              system.
As part of the continuing focus on the impact of the
                                                              A session by Gordana Vasic, the Manager Health Care
unprecedented bushfires in Australia and particularly
                                                              Interpreter Services of Western Sydney Local Health
New South Wales in 2020 and 2021, Cancer Voices has
                                                              District (LUD) provided insights into the LHD being
sent letters to the Minister for Health Brad Hazzard,
                                                              early adopters of ‘my virtual care’. Having become
the Resilience NSW Commissioner Shayne
                                                              champions they were well prepared to adapt their
Fitzsimmons, and the NSW Rural Fire Service
                                                              services to offer virtual interpreter services during the
Commissioner Bob Rogers. A significant element of
                                                              restrictions of COVID-19. The time and money saved
the letters is the Cancer Voices proposal that the NSW
                                                              on travel for interpreter’s meant more time could be
Government establish a mobile health monitoring
                                                              spent with patients and an increased number of
service for bushfire fighters along the lines of that
                                                              sessions were possible. The change was well received
provided to workers exposed to dust diseases through
                                                              by patients, families and the interpreters.
the icare mobile Lung Screen unit:
https://www.icare.nsw.gov.au/employers/employer-                                                           Shirley Baxter
obligations/lung-screening-service#gref (sometimes
called the ‘Lung Bus’). Cancer Voices is eagerly
awaiting responses to its proposal for the                    NSW Cancer Plan
establishment of a ‘Firies Bus’.
                                                              As previously reported, Nous Group, an independent
                                    Murray McLachlan          consulting firm, continues to work with the Cancer
                                                              Institute NSW and key organisations on the
Update: We have been advised that as this issue falls
                                                              development of the fifth NSW Cancer Plan.
within the administration of the Hon Kevin Anderson
MP, Minister for Better Regulation and Innovation, our        CVN is involved through the NSW Cancer Plan
correspondence has been forwarded for his                     Governance Committee which last met on 16
consideration and appropriate action.                         November and CVN representatives have participated
                                                              in the stakeholder engagement process and some of
                                                              the co-design workshops. Early consumer
2020 Value Based Healthcare Virtual Forum – NSW               consultations, interviews with senior stakeholders and
Health                                                        eight co-design workshops have been completed.
The Value Based Healthcare Virtual Forum was held             David Currow, Chief Cancer Office and CEO CINSW,
over 2 days on 9-10 November 2020.                            provided a 30 minute briefing on 15 December which
                                                              included high-level insights and themes that have
Elizabeth Koff, Secretary of NSW Health opened the
                                                              emerged from the consultations, which will ultimately
Forum which offered free registration and flexibility to
                                                              shape the next NSW Cancer Plan. More than 650
register for individual sessions. This provided great
                                                              individuals representing government, non-
flexibility for health workers and consumers to select
                                                              government, health services, researchers, not-for-
sessions of most interest and participation within
                                                              profit and community organisations have been
work and other commitments.
                                                              involved and contributed over the last three months.
Workshops were informative and interactive and                There will be opportunities for further input including
Masterclasses were also included over the two days            during a public consultation period in early 2021. The
offering a wide selection of topics with a major focus        development of the new plan is still on track for
on patient centred care.                                      implementation from 1 January 2022.
Value based healthcare was a component of the                                                       Elisabeth Kochman
Program where we were able to hear more about how
virtual care can contribute to the quadruple aim of
improved experiences for individuals, families and
carers, improved experiences for service providers and

4 | Page                            www.cancervoices.org.au                          the Voice of People Affected by Cancer
NSW Budget: cancer-related and palliative care                The budget included a funding boost of $56million for
funding extended; new and redeveloped hospitals               the provision of palliative care services in people’s
                                                              homes. It includes:
The NSW State budget, normally delivered in May
each year, was this year delayed due to the timing of         $30.4 million over four years to support multi-
the federal budget and the impact of COVID-19. The            disciplinary approaches for end of life and palliative
2020-21 State budget was delivered on 17 November             care to meet the needs of patients and their families
2020, with almost $50million ($49.6million) allocated         and carers. This includes:
to new cell and gene therapies across a range of
                                                             •    $4.5 million per year for up to 35 additional allied
diseases, with the funding including the support of
                                                                  health professional positions such as occupational
access to:
                                                                  therapists, speech pathologists, dietitians and
• CAR T-cell therapy (a therapy which modifies a                  physiotherapists, to address patients’ physical
  person’s immune cells to attack their cancer, thus              health needs and to support safe discharge from
  offering hope for remission and longer-term                     hospital so that people can be cared for at home if
  survival for children and young adults with Acute               they choose.
  Lymphoblastic Leukaemia) and adults with diffuse
                                                             •    $1.2 million per year, from 2021/22 to implement
  large B-cell Lymphoma
                                                                  education and training to develop and grow the
• monoclonal antibody therapy for neuroblastoma
                                                                  specialist palliative care workforce, and enhance
  that vastly improves the outcomes for children
                                                                  capability across the health workforce.
  with this type of cancer.
                                                              $2 million per year to improve access to bereavement
In a pre-Budget announcement, the Government
                                                              and psychosocial support services for people
provided $1million to a new cancer and wellness
                                                              experiencing complex grief.
centre in Echuca in Victoria to help deliver
chemotherapy and dialysis to cross-border                     $25.6 million over four years to increase End of Life
communities. Echuca is ‘twinned’ with the NSW town            home support packages across NSW, including:
of Moama in a similar way to Albury-Wodonga. The                   •   case management and services such as;
new centre will provide access to haematologists,                      personal care, domestic support, assistance
medical oncologists, nephrologists, and radiation                      with meals, in-home respite and transport to
oncologists. NSW and Victoria have a long-standing                     appointments;
agreement for cross-border health care, with NSW
providing a reimbursement of about $63million to                   •   the new funding will supplement this program
Victoria in addition to the $120million Health NSW                     with an additional 5,000 packages.
provides to Albury-Wodonga Health for NSW                     The palliative care funding is in addition to the
residents. Cancer diagnostic services are provided for        $220million allocated to palliative care services each
Moama residents at Deniliquin hospital.                       year.
Significant funding of new and redeveloped hospitals          Note: Information in this article has been adapted
and associated health services in rural and regional          from the NSW Budget media releases from the
areas of NSW in the budget included:                          Treasurer, Dominic Perrotet and the NSW Minister for
•   Wyong Hospital redevelopment (ongoing)                    Health, Brad Hazzard.
•   Maitland Hospital (new)                                                                        Murray McLachlan
•   Dubbo Hospital redevelopment and Western
    Cancer Centre in Dubbo (new)
•   Broken Hill Medical Imaging and Breastscreen              Parliamentary inquiry into health services in South
    Service refurbishment                                     West Sydney Growth Region
•   Inverell and Glenn Innes hospitals redevelopment
                                                              A report of the NSW Parliament Legislative Council’s
•   Coffs Harbour Hospital expansion
                                                              inquiry into the current and future health services in
•   Wagga Wagga, Tumut, Griffith and Albury
                                                              the South West Sydney Growth Region has just been
    hospitals redevelopment
                                                              released.
•   Goulburn and Bowral hospitals redevelopment.

Newsletter No 80 December 2020                  Published by Cancer Voices NSW Inc                             Page | 5
There are issues in the report that Cancer Voices has             Inquiry Report:
identified and discussed relevant to provision of
                                                                  https://www.parliament.nsw.gov.au/lcdocs/inquiries/
cancer services, some of which we discussed during
                                                                  2579/Report%20No%2055%20-%20Current%20and%2
our recent EC meeting including:
                                                                  0future%20provision%20of%20health%20services%20
    •      equity issues, principally a perceived inequity        in%20the%20South-
           in funding of health services (Chapter 3)              West%20Sydney%20Growth%20Region.pdf
    •      chronic diseases prevention and management             Following is a link to the submission to the inquiry by
           (Chapter 5)                                            Angela Lonergan, who is a member of Cancer Council
    •      palliative and aged care (Chapter 5)                   NSW’s South West Sydney Cancer Advocacy Network.
    •      communication and coordination among                   Angela refers to the quality of cancer treatment and
           health providers (Chapter 5)                           care over a range of cancer types she has received
    •      role of private health providers and                   over many years in the region, but points to issues of
           community services in a public health network          gaps in allied health support, a lack of psychological
           (Chapter 5).                                           support accompanying a cancer diagnosis and during
                                                                  treatment, difficulties in accessing lymphoedema
While the context is South West Sydney, the issues are            services, and transport to treatment.
common across the wider NSW health system.                        Submission:https://www.parliament.nsw.gov.au/lcdoc
                                                                  s/submissions/68019/0042%20Ms%20Angela%20Lone
                                                                  rgan.pdf

Voluntary Assisted Dying in NSW in 2021 - Have your               from Go Gentle Australia and the opportunity to
say about Cancer Voices’ further involvement                      discuss issues using the Zoom ‘Chat’ facility.
The Cancer Voices Executive Committee has                         The Executive Committee has subsequently held two
considered issues associated with voluntary assisted              lengthy discussions about voluntary assisted dying and
dying (VAD) legislation in NSW over the course of                 palliative care-related issues and the DWD invitation
2020, in particular an invitation from Dying with                 to Cancer Voices for further involvement, including:
Dignity NSW (DWD) to Cancer Voices to become more
                                                                  • a presentation from and discussion with Penny
fully involved in the DWD campaign in support of the
                                                                    Hackett and Shayne HIgson on 22 September 2020;
introduction of voluntary assisted dying arrangements
in NSW.                                                           • a presentation from and discussion with Dr Sally
                                                                    Greenway, Director, Supportive and Palliative
This began with a meeting of the Cancer Voices
                                                                    Medicine, Western Sydney Local Health District on
Leadership Team (Elisabeth Kochman, Chair; Shirley
                                                                    24 November 2020.
Baxter, Deputy Chair; Murray McLachlan, Deputy
Chair) with DWD representatives (Penny Hackett,                   • The independent member for Sydney in the NSW
President; Shayne Higson, Vice President, and Dr Liz                Parliament, Alex Greenwich, announced on 14
Jacka, Board Member) on 23 January. The meeting                     December 2020 that he will draft legislation, based
provided the opportunity to discuss DWD’s efforts in                on the Western Australia model, that will ‘create a
previous years to achieve the passage of voluntary                  framework for people in NSW to access voluntary
assisted dying legislation in NSW, as well as where                 assisted dying’.
DWD at that stage saw the issue developing.                         https://www.alexgreenwich.com/media_release_a
                                                                    ssisted_dying_legislation?utm_campaign=update_
It was thought that DWD would probably put its
                                                                    387&utm_medium=email&utm_source=alexgreen
campaigning on hold given the impact of COVID-19
                                                                    wich
and the timing of the NSW electoral cycle. However,
the DWD campaign, which aims to achieve the                        •
                                                                 As a Cancer Voices member, you will have the
consideration of a draft voluntary assisted dying Bill by
the NSW Parliament in 2021, was relaunched on 1                  opportunity to provide your views to the Executive
October 2020. The launch featured Andrew Denton                  Committee on whether, and the extent to which, CVN
                                                                 should be more fully involved in the DWD campaign.
                                                                 The short survey will take place in January 2021.

6 | Page                               www.cancervoices.org.au                          the Voice of People Affected by Cancer
Links to some background reading including the                     https://onlinelibrary.wiley.com/doi/pdf/10.1111/imj.13
current Cancer Voices NSW Voluntary Assisted Dying                 951
Position Statement (which was initially adopted in July         • Overview of euthanasia and assisted dying in Australia:
2017) to assist in your thinking are provided below.              https://end-of-life.qut.edu.au/euthanasia
The position statement emphasises the importance of             • Navigating the assisted dying debate:
people with cancer having the right to understand all             https://www.goodsams.org.au/article/navigating-the-
of the choices available to them, and therefore Cancer            assisted-dying-debate/
Voices has a role to advocate for greater choice for            • Ethical challenges about assisted dying (an Australian
people with cancer in relation to their treatment                 medical oncologist’s view):
options.                                                          https://www.goodsams.org.au/article/navigating-the-
                                                                  assisted-dying-debate/
Current Cancer Voices position statement (initially
adopted in July 2017):                                          • A Canadian philosopher’s view:
https://www.cancervoices.org.au/wp-                               https://mercatornet.com/putting-the-pros-and-cons-of-
content/uploads/2018/08/CVN-Position-Statement-                   euthanasia-under-the-microscope/47619/
Voluntary-Assisted-Dying-May-2018.pdf                           • Pro and Con arguments (Note: this is a ‘Custom written’
Previous Cancer Voices newsletters have included                  essay on the internet provided free for students):
                                                                  https://studycorgi.com/euthanasia-pros-and-cons/
information about voluntary assisted dying:
• October 2017 (page1; page 5):
                                                               Recent developments in other Australian states and
  https://www.cancervoices.org.au/wp-
  content/uploads/2017/11/NEWSLETTER_CVN-                      New Zealand may have a bearing on how the issue
  October_2017.pdf                                             progresses in New South Wales. These include:

• December 2017 (page 4):                                       • announcement that the re-elected Queensland
  https://www.cancervoices.org.au/wp-                             Government will introduce VAD legislation in
  content/uploads/2017/12/NEWSLETTER_CVN-                         February 2021, ahead of the delivery of the final
  December_2017A.pdf                                              Queensland Law Reform Commission report on the
• March 2018 (page 5)                                             matter;
  https://www.cancervoices.org.au/wp-                           • passage of the New Zealand referendum in
  content/uploads/2018/04/NEWSLETTER_CVN-
                                                                  October 2020 to commence voluntary assisted
  March_2018_V3.pdf
                                                                  dying arrangements in November 2021.
• December 2019 (page 1; page 5):
  https://www.cancervoices.org.au/wp-
                                                               Developments in Tasmania have perhaps been of most
  content/uploads/2019/12/NEWSLETTER_CVN-                      significance. On the fourth attempt in the last eleven
  Dec_2019-Final-.pdf                                          years to introduce VAD legislation, the Tasmanian
                                                               Parliament has approved a draft bill (the End of Life
Other references:                                              Choices Bill), presented by Mike Gaffney, an
Dying With Dignity NSW website:                                independent MP in the Tasmanian upper house.
https://dwdnsw.org.au                                          Unanimous approval in the Legislative Council
                                                               occurred in November, and a vote of 17-7 approved
Go Gentle Australia website:
                                                               the bill in the Legislative Assembly in December 2020.
https://www.gogentleaustralia.org.au

Links to arguments for and against voluntary assisted          The draft legislation is now being examined by the
                                                               University of Tasmania, with it then to be considered
dying legislation (you may need to read through some
of these items to find the relevant information):              for amendment by the lower house in March 2021. If
                                                               final approval is then successful, the provisions would
• United Kingdom article, 2004:                                commence in mid-2022, which would make Tasmania
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC258571          the third Australian state, along with Victoria and
  4/?source=post_page-                                         Western Australia, to have voluntary assisted dying
• Medical Oncology Group of Australia position statement       provisions in operation.
  and member survey results, March 2018:
                                                                                                      Murray McLachlan

Newsletter No 80 December 2020                   Published by Cancer Voices NSW Inc                               Page | 7
This is a series of four free short modules designed to
   Consumer Involvement in Research (CIR)                     inform and prepare consumers to be involved in
                                                              cancer-related health and medical research. Once you
A new group of recruits has joined our Consumer               have completed the online modules, you can register
Involvement in Research Program following                     an expression of interest at
completion of their training in September with the            https://www.cancercouncil.com.au/consumersresearc
workshop component. The training is a collaborative           h-training-expression-interest-form/ for consideration
effort between Cancer Voices NSW and Cancer Council           to be included in the next Cancer Council NSW half
NSW. Following the training, twelve new enthusiastic          day workshop on a date to be determined in 2021.
members have joined Cancer Voices NSW and
indicated their willingness to be involved with               For the 2020 grant funding cycle, there were 82
research projects as consumer representatives. This           requests from researchers and committee organisers
brings the number of consumers available to be                involving 133 consumers. For the 2021 funding cycle,
partnered with researchers to 130. These new Cancer           researchers have started to send requests for
Voices members bring a wealth of experience and               consumers as they prepare their funding applications.
expertise and will provide great insight as they              February to April is a busy period for our CIR program.
contribute their perspective to research projects and         Already, for the 2021 funding cycle, there have been
cancer committees.                                            12 requests for consumers to be involved with
                                                              research projects, with 17 consumers undertaking this
This year, due to the restrictions placed on meetings         important role. Please check your emails daily and
and gatherings, the face-to-face component of the             respond to any emails from Cancer Voices as soon as
training was delivered online by Zoom. The workshop           possible, so that matching can be undertaken within a
used the Zoom interactive features, including polling,        short time frame. Please let us know if you have
breakout rooms and the chat bar for interactive               changed your email address so we can keep your
questions and answers. A lot of time was put into             contact details up to date.
organising this session by Stephanie Ohlback from
Cancer Council NSW to ensure that the two hour                I would like to thank all consumers for their
session was informative and designed to facilitate            willingness to undertake this vital role in cancer
maximum interaction by all involved.                          research. This year has been particularly busy with
                                                              several of our consumers taking on multiple projects
Cancer Voices NSW would like to thank the Cancer              to ensure that an appropriate consumer was matched
Council NSW, in particular Jane Hobson and Stephanie          to each request we received.
Ohlback, for their hard work and dedication to
ensuring the ongoing success of the CIR program.              This will be my last update on the CIR program as I am
                                                              stepping down from coordinating the program. I
The training is in two parts – the on-line modules and        would particularly like to thank Julie Marker from
a face-to-face segment. If you are interested in              Cancer Voices SA who has kindly supported me with
becoming a consumer partner, you can access the               matching requests that have come from interstate
modules at https://cancercouncil.litmos.com.au/self-          researchers and committees.
signup/register/3064?type=2
                                                                                                                 Lee Hunt

Announcement – changes within our CIR                         ‘Since late 2015, our CIR Program requests have been
Program                                                       well managed by CVN Executive Committee member
                                                              Lee Hunt.
Acknowledgement and Thank You! ………
                                                              In that time, Lee has linked trained consumers with
As indicated above, Lee Hunt has announced that she           many projects across a diverse range of cancers and
is stepping down from the CVN CIR Program.                    aspects related to improving prevention, diagnosis,
Lee’s long standing involvement and dedication was            treatment, care, survivorship, end of life and palliative
acknowledged in our 15 year Special Report of the CIR         care for those affected by cancer. During this time, Lee
Program in our previous newsletter.                           has also developed a special rapport with our
                                                              consumers and many of the researchers who use the

8 | Page                            www.cancervoices.org.au                          the Voice of People Affected by Cancer
Program …….. We are most grateful for the ‘safe               our newsletter. Kathryn became a member of the CVN
hands’ and dedication that Lee has provided to the CIR        Executive Committee in 2019.
Program since 2015.’
                                                              With a professional background in training and
In looking back through our records, Lee has been in          facilitation, Kathryn has been very generous by given
this role for the second longest period behind former         time to facilitate each of our annual inhouse
EC member, the late Sally Hodgkinson, who amongst             workshops since 2018.
other roles for both Cancer Voices and the Breast
                                                              Kathryn is no stranger to the research world. Like
Cancer Action Group, managed both our consumer
                                                              many of our consumers, Kathryn has a very strong
reps requests and our research requests for some 7
                                                              commitment to and interest in research through not
years.
                                                              only our CIR Program but also through the
Once again, we thank Lee for her valuable contribution        Translational Research Network (TCRN) consumer
and being the constant in this important work during          advisory panel (CAP) at the University of NSW. She has
this time. Lee is very passionate about research and          also been a member of the Consumer Review Panels
continues to be involved in a number of projects in her       for Cancer Council NSW, National Breast Cancer
areas of interest. Lee has been a regular contributor to      Foundation and Cancer Australia where she has had
our newsletter since joining Cancer Voices not only           the opportunity to assess applications for cancer
with her regular CIR updates but across a range of            research grants.
issues and concerns impacting those affected by
                                                              Kathryn is already known to several of our special CIR
cancer. You will continue to hear from Lee via our
                                                              consumer community and is looking forward to
newsletter. Lee has indicated that she has something
                                                              working with you all, getting to know you and
planned for our first newsletter next year.
                                                              understanding your interests.
New appointment - welcome to Kathryn Leaney
                                                              We first profiled Kathryn back in 2017, refer Page 10 at
I would like to announce that CVN EC member Kathryn           https://www.cancervoices.org.au/wp-
Leaney has offered to take on the co-ordination of            content/uploads/2017/09/NEWSLETTER_CVN-
requests for our CIR Program. Kathryn should be               August2017_V1-EK1.pdf
familiar to many as she has been a very active CVN
member for a number of years.
                                                                                                  Elisabeth Kochman
She has been a member of CVN since 2013 and in 2014
she answered a call to assist with the production of

Implications of end-of-year NHMRC funding grants for research

'Not a way to live': Scientists brace for bleak Christmas as COVID cash crunch hits research

This item from the Sydney Morning Herald, 3 December, is in regard to the ramifications of the end-of-year
funding grants by the NHMRC (with the success rate of applications down to 10%, the lowest success rate on
record) and wider impacts of COVID-19 on Australian medical research.

Link: https://www.smh.com.au/national/not-a-way-to-live-scientists-brace-for-bleak-christmas-as-covid-cash-
crunch-hits-research-20201203-p56kda.html

                                           To our new members
                   A warm welcome to those who have joined Cancer Voices in recent months.
    Please let us know if you would like to be more involved or have issues that you would like to raise and or
                                                      discuss.
                         To all our members and consumer representatives
                        We love hearing from and engaging with our members and readers.
                      If you are in a representative role please consider providing an update.
                                        All emails to info@cancervoices.org.au

Newsletter No 80 December 2020                  Published by Cancer Voices NSW Inc                            Page | 9
Consumer Involvement in Research Program Review update
Work on the external review of Cancer Voices’                 A major component of the Review was the survey of
Consumer Involvement in Research (CIR) Program has            consumers and researchers, including the re-
taken place during the past four months. The aims of          administration of the survey used in the previous,
the Review (as detailed in the Cancer Voices                  internal review of CIR in 2016. Your survey responses
Newsletter September/October 2020 issue, pages 9-             have provided a rich source of information that have
11 https://www.cancervoices.org.au/wp-                        helped inform the Review.
content/uploads/2020/10/NEWSLETTER_CVN-SEPT-
                                                              The Executive Committee thanks all those who took
OCT2020_FINAL.pdf ) were to provide:
                                                              the time to respond to the survey and to provide your
• an analysis of the Program’s current operation,             views on how CIR (and more broadly, Cancer Voices)
  identifying it strengths and weaknesses, and                operates and where it might head in the future.
  opportunities and threats;                                  A comparison of the 2016 and 2020 survey results
• recommendations for the consideration of the                indicates a more fully functioning Program (and
  Executive Committee that will result in the optimal         organisation) that is valued by researchers and
  operation of the Program as currently structured;           consumers while having significant potential to be
                                                              developed and more closely managed so that it builds
• recommendations for the consideration of the
                                                              on its past successes while expanding its operation in
  Executive Committee that could result in the
                                                              the cancer, and potentially, the broader health
  consolidation and future expansion of the Program
                                                              research sector.
  into areas not currently identified.
                                                              The Executive Committee will receive a briefing
The report from the Review will provide:
                                                              session on the results and implications in January 2021
• a framework on which to reconfigure CIR to                  from Graeme Gherashe, the external consultant who
  address a changed and changing operational                  conducted the Review, and will consider the findings
  environment;                                                as the sole focus of its Think Tank Workshop that will
                                                              follow the Cancer Voices Annual General Meeting on
• the opportunity to strengthen its current
                                                              19 February 2021. Graeme Gherashe will facilitate the
  management approach;
                                                              workshop.
• the opportunity to improve its capacity to be pre-                                                Murray McLachlan
  eminent in what is an increasingly competitive
  environment for researchers to identify and engage
  research consumers.

            Do you have a big, innovative idea about how to
            improve and transform the health system and health
            outcomes in Australia or New Zealand?
            The Consumers Health Forum of Australia wants to know! They are inviting
            you to send in videos of your ideas for innovation in health, to be part of the
            Big Ideas Forum at their Australian and New Zealand Shifting Gears Summit
            in March 2021.

            Found out more about how to be part of Shifting Gears and make a Big Ideas video!

10 | Page                           www.cancervoices.org.au                         the Voice of People Affected by Cancer
The Voices Being Heard
Meetings                                                               • CHF Self-care and self-management: a follow up to the
•   CVN / HCNSW, 14 October, 25 November, 9 December                     blueprint report, 28 October
•   HCNSW AGM, via Zoom, 16 October                                      https://www.youtube.com/watch?v=XzVz_5dk-Js
•   Sydney Cancer Conference planning committee, 2 Nov                 • Sydney Catalyst Early & Post Graduate Researcher Forum, 30
•   CINSW, COP briefings, 4 November, 11 December                        October
•   NSW Cancer Plan Governance Committee, 16 November                  • VCCC Cancer & COVID-19 in Victoria: Challenges &
•   CVN CIR Review, Steering Committee, 20 November, 3 Dec               perspectives from the USA, 6 November
•   CVN EC, 24 November, 1 December                                    • HCRA Symposium, 6 November. Recording link
•   CHF 2020 AGM, 23 November                                          • RCA / NOA Vision 20-30 launch, 9 November
•   CCA supporting people during COVID-19, 25 November                 • COSA ASM, 11-13 November
•   Genetic Alliance Australia AGM, 26 November                        • Funeral service Chris Christensen, CVSA, 12 November
•   RANZCR, FRO Roundtable, 27 November                                • RANZCR Interventional Radiology Committee planning
•   Targeting Cancer, 4 December                                         workshop, 17 November
•   Cardio oncology special interest group, 4 December                 • SAHMRI & Bragg Centre Proton Therapy & Research webinars,
•   CCNSW AGM, 8 December                                                explores How can we improve the radiation experience for
•   HCNSW, 1 December, 9 December, 15 December                           patients and families 18 November, 25 November
•   HCNSW Board, 11 December                                             https://m.youtube.com/channel/UCuiDs88eLL358mWJ_9HhCdg
•   RANZCR, FRO Council, 11 December                                   • CHF Members Policy Forum, 23 November
•   CINSW, 15 December                                                 • CINSW Cancer Conversations: Cardio-Oncology, 24 November
•   UTS, various & ongoing                                             • George Institute, JoinUs webinar, 26 November
                                                                       • PC4 Forum, 7 December
Forums / Webinars / Events                                             • CCNSW, Advocacy webinar, 10 December
                                                                       • Garvan webinar, Our 2020 scientific discoveries, 16 December
• Australian Health Research Alliance Co-design Workshop, 29
  September                                                           Submissions and invitations to comment and endorse
• CHF, Australian Federal Budget briefing analysis, 9 October,
  https://www.youtube.com/watch?v=G4YBW_YeHDk                         Submissions
• HCNSW/Sydney Health Partners CIR workshop, 13 October               Establishment of mobile health monitoring service for bushfire
• RCA/NOA Genomics Blueprint Report launch, 15 October, see           fighters to
  further details, P19                                                     •     Minister for Health, Brad Hazzard, 11 November
• George Institute: George talks on Food, COVID, Sensible Policy,          •     Commissioner Rural Fire services, 11 November
  16 October                                                               •     Commissioner Resilience NSW, 11 November
                                                                      For comment
• Garvan Breast Cancer Symposium, A virtual tour of the lab, 23
                                                                           •     CA, Report on the Lung Cancer Screening Enquiry,
  October,
  https://www.youtube.com/watch?v=UR3X0sJtqCY&feature=y                          December
                                                                      Endorsement
  outu.be
• NSW Cancer Plan co design workshop, 26 October                           •     The Cancer Survivorship Care Consensus Statement,
                                                                                 November
• CCA, 2020 Cancer Consumer Forum, 27 October

                              From Consumers Health Forum Australia (CHF):
                        A summary of recent webinars replays for healthcare consumers
      •    Self-care… patient power - a webinar will be on self-care and self-management and follow-up on the Mitchell
           Institute’s national blueprint for support and development of self-care released on 7 Oct 2020 .... watch replay
      •    Patients, partners in health – significant trends for change, with increasing acceptance of patients being
           engaged as partners with clinicians. What does this mean for Australia’s approach? .... watch replay
      •    Social prescribing, the referral of patients to non-medical activities to supplement conventional care - webinar
           on successful trials in Canada and Australia .... watch replay
      •    A celebration of the learnings from the National Collaborative Pairs program .... watch replay
      •    Script change - electronic prescribing and the consumer ... watch replay
      •    Not Going Viral - consideration of future-focused health policy post COVID with Deputy Chief Medical Officers
           Dr Nic Coatsworth and Prof Michael Kidd ..... watch replay
      •    Telehealth in Primary Care ..... watch replay
      •    The National Health Information Strategy - what is it, and does it mean for consumers ...... watch replay

Newsletter No 80 December 2020                          Published by Cancer Voices NSW Inc                                    Page | 11
Recently updated information resources at Cancer Council (CC)
  All content in these publications has been reviewed and updated by multidisciplinary panels of experts.

  Fertility and Cancer – this booklet looks at the impact of cancer treatment on fertility
  Understanding Cancer in the Liver – this booklet is for people affected by liver cancer
  Mouth Health and Cancer – this guide provides information about how cancer treatments can affect the mouth
  area
  Understanding Myeloma – this booklet is for people affected with myeloma, a type of blood cancer
  Caring for Someone with Cancer – this booklet is for people caring for someone with cancer
  Understanding Lung Cancer – this booklet is for people affected by lung cancer
  Understanding Vulvar and Vaginal Cancers – this booklet is for people affected by vulvar and vaginal cancers
  Understanding Kidney Cancer – this booklet is for people affected by kidney cancer.

  Recently recorded events by Cancer Council that may be of interest:
  13 11 20 Day Live streaming recording
    Cancer Council Information and Support Line staff members across Australia along with breast cancer
    survivor, Laraine, joined the live stream to discuss all things cancer and answer questions. You can view
    the recording here.

  Webinar: “What’s so different about cancer survivorship when you’re a young adult?”
    Young adult survivors (25-40 years) continue to experience complex issues beyond the immediate
    treatment phase. Workplace conversations, body image, gaps in peer support and long term effects from
    the treatment can make it difficult to fully articulate how treatment has impacted your life. The webinar
    recording is available here.

  Garvan Institute of Medical Research                           Consumer Engagement in Health Care Policy,
                                                                 Research and Services: Methods and Effects.
  Watch a range of videos from previous Garvan
  seminars and learn about the latest trends and                 This review assesses the effects of consumer
  advances in medical research at                                engagement in health care policy, research and
  https://www.garvan.org.au/tours-events/public-                 services.
                                                                 Access in full on Research Square.
  seminars/previous-seminars

  From the Pacer Network
  ‘Due to COVID-19, we were unable to run our research workshops this year. We did however continue our
  monthly webinar series and would like to say a special thanks to all the presenters. We discussed a range of
  interesting topics related to patient-centred research, including consumer engagement in evidence synthesis,
  eliciting patient perspectives with nominal group technique, and developing core outcomes for COVID-19. To
  access the full program and webinar recordings, click here. ‘

  The PACER Network was established in 2018 and is a joint initiative of The University of Sydney, and the Kids
  Research at The Children’s Hospital at Westmead, Westmead Hospital, and the Westmead Institute for Medical
  Research.

12 | Page                             www.cancervoices.org.au                             the Voice of People Affected by Cancer
SPECIAL REPORT – GENETIC TESTING
On 17 November, NSW Treasurer, Dominic Perrottet,                     Imagine that the genome is a book. There are twenty-three
announced that “patients with blood cancers and some rare             chapters, called CHROMOSOMES (called either X or Y). Each
genetic diseases will benefit from a $49.6 million funding            chapter contains several thousand stories, called GENES.
boost for innovative new cell and gene therapies in the 2020-
                                                                      Each story is made up of paragraphs, called EXONS, which
21 NSW Budget. This is an exciting time in medicine. There is
                                                                      are interrupted by advertisements called INTRONS. Each
a wave of cell and gene therapies now available for rare,
                                                                      paragraph is made up of words, called CODONS.
previously untreatable, often fatal conditions.”
                                                                      Each word is written in letters called BASES using only
But what does this all mean? What is gene therapy and how             four letters: A, C, G and T (which stand for adenine,
can it help people with rare cancers? This Special Report looks       cytosine, guanine and thymine). The human genome
at genetic/genomic testing and how it could impact on a               contains more than three billion DNA base pairs and all of
person’s health outcomes, and on the role of the genetic              the genetic information needed to make us.
counsellor.
                                                                      There are more than one billion words in the book, which
What is Gene Therapy?                                                 makes it longer than 800 Bibles.

Gene therapy is an experimental technique that involves               If you were to read the genome out at the rate of one
altering the genes inside a person’s cells in an effort to            word per second for eight hours a day, it would take you a
treat or stop disease. By replacing a faulty gene or adding           century. If you wrote out the human genome, one letter
a new one, gene therapy can be used to correct defective              per millimetre, your text would be as long as the River
genes in order to cure or help fight disease instead of using         Danube. This is a gigantic document, an immense book, a
drugs or surgery.                                                     recipe of extravagant length, and it all fits inside the
                                                                      microscopic nucleus of a tiny cell that fits easily upon the
To better understand how this works, we must first                    head of a pin.
understand the gene and how genomic testing can be used
to identify the faulty genes in the first place.                    Variations
Genetics or Genomics?                                               Almost everything in the body, from hair to hormones, is
                                                                    either made of proteins or made by them. Proteins are
The terms ‘genetics’ and ‘genomics’ are often used                  molecules that provide structure and function to cells.
interchangeably, but they are different. Genetic testing            Proteins are also responsible for switching genes on and
usually looks at just a single gene, while a genomic                off. Different genes are switched on or off in different parts
sequencing test can capture information from the whole              of the body and at different times in the development and
genome (all of a person’s DNA), part of the genome that             growth of a living organism. Malfunction of these proteins
codes for proteins (called the exome) or a panel of genes           can have wide-ranging effects in the body.
related to a particular condition, thus allowing scientists to
analyse all the genes relevant to a particular condition in         When genes are replicated, mistakes are sometimes made.
the one test.                                                       A letter (A, C, G, T) is occasionally missed out or the wrong
                                                                    letter inserted. Some letter changes look different but
Genomics is the study of all of a person's genes (the               don’t change the meaning - therefore, the gene still works.
genome), including interactions of those genes with each            Other letter changes look different and do change the
other and with the person's environment.                            meaning – and this means that the gene doesn’t work as it
What is a genome?                                                   should. Other changes look different but the meaning of
                                                                    the changes is not known. Therefore, what the effect on
All living organisms, from bacteria to elephants, have              the gene might be is not known.
genomes. A genome contains the instructions – the genetic
information - needed to make a living organism. These               Variation in a person’s genomes can reveal whether they
instructions are written in the DNA (deoxyribonucleic acid)         might develop a genetic condition, or that they are more
which is in turn packaged into structures called                    susceptible to developing a certain condition. Also, a
chromosomes. Every cell in your body contains the same              variation in a person’s genome means they may respond
DNA that is unique to you and it is replicated every time a         differently to a treatment for the same condition. This is
cell reproduces such as when your hair grows or your skin           where personalised treatment comes in.
heals after a cut.                                                  The BRCA1 and BRCA 2 genes are probably the most well-
Matt Ridley puts it very succinctly in his book: “Genome: the       known gene variations. Having a variation in one or either of
autobiography of a species in 23 chapters”.                         these genes can increase the risk of developing breast or
                                                                    ovarian cancer. Women with a variant in the BRCA1 or
                                                                    BRCA2 genes have a significantly increased chance of
                                                                    developing breast and ovarian cancer during their lifetime.

Newsletter No 80 December 2020                        Published by Cancer Voices NSW Inc                                 Page | 13
Some women with such a mutation may decide to undergo             Pre-test counselling and consent: Genomic testing can
surgery to reduce the risk of developing the condition later in   generate uncertain or unanticipated information and can
life.                                                             have implications for other family members. The individual
                                                                  must give their informed consent to the test and for this
Mapping the Human Genome
                                                                  they need a level of health/genetic literacy to understand
So how are variations identified?                                 the test and its implications. Not all tests result in a clear
                                                                  unambiguous outcome. Pre-test counselling and consent is
The entire human genome was first mapped and sequenced
                                                                  designed to ensure that patients understand what is being
over a period of 13 years from 1990 to 2003. The Human
                                                                  done and why and that they have realistic expectations
Genome Project (HGP) was a ground-breaking international
                                                                  about the testing outcomes.
initiative, considered to be one of the most ambitious
scientific projects undertaken in the twentieth century.          The Test: A DNA sample, usually extracted from a blood
                                                                  sample, is needed for the genomic sequencing test. The
The Human Genome Project was a composite derived from
                                                                  sample is sent to a pathology laboratory where the DNA
analysing blood from around 100 different individuals and
                                                                  can be ‘extracted’. There are several types of tests and the
was designed to generate a resource that could be used for
                                                                  most appropriate one for each individual will depend on
a broad range of biomedical studies. One such use is to look
                                                                  the type of genetic variant the doctors are trying to find.
for the genetic variations that increase risk of specific
                                                                  The results are analysed and presented in a way that can
diseases, such as cancer, or to look for the type of genetic
                                                                  be explained to the patient by a genetic counsellor.
mutations frequently seen in cancerous cells.
                                                                  Post-test counselling: It is important for patients to
Inheritance and genetic conditions
                                                                  understand all aspects of the test results, including
In genomics, inheritance is the passing of genetic                uninformative or uncertain results, and potential
information from parents to their children. This is why           implications for clinical management or for other family
members of the same family share similar characteristics          members. The process of post-test counselling after
including eye and hair colour, cheek dimples and earlobe          genomic testing will vary greatly by patient and by the type
type. Individuals inherit their genomes from their parents –      of test results. Patient responses to, understanding of, and
50% from their mother and 50% from their father. Genetic          interpretation of results will naturally be influenced by
variants that cause health conditions can be passed on from       their particular situation.
parents to their children.
                                                                  What role does a Genetic Counsellor play?
Cancer is a disease of the genome. It arises when genes
                                                                  While a clinician may recommend that a person undertakes
involved in promoting or suppressing cell growth sustain
                                                                  a genetic test to determine the risk of disease or to identify
mutations that disturb the normal stop and go signals.
                                                                  the genetic variants which may be causing their condition,
Sequencing the human genome has helped researchers to
                                                                  they are not always trained to provide the necessary
identify important genes and genetic sequences, to better
                                                                  explanations and support to the individual.
understand their role in disease. Since 2003, many gene
variations have been identified that increase the risk of         Genomic information can have medical, psychological, family
developing a range of conditions, such as cancer, diabetes,       and reproductive implications. Sometimes the results are clear
and cardiovascular disease.                                       but often the results are ambiguous and this can cause
                                                                  additional stress. For many people, the uncertainty around a
How, then, does a person learn if they have a variation and
                                                                  diagnosis may result in anxiety, confusion and often
of its implications for themselves and their family members?
                                                                  misunderstanding. It is not something that they can or should
The Genetic Testing Process                                       deal with alone. This is where the genetic counsellor comes in.
There are several steps involved in having a person’s             The genetic counsellor helps individuals, couples and
genome sequenced. Two of these steps involve genetic              families understand genetic medical conditions and adapt
counselling.                                                      to the impact of information provided by genetic and
                                                                  genomic testing. They can explain what options may be
Identify the Individual: The first step is to identify the
                                                                  available if a clear diagnosis in not made; including further
person for whom a genomic test is appropriate. This could
                                                                  testing in future or being linked with a research project.
be following their own diagnosis of cancer, particularly if
                                                                  They can interpret family and medical histories to assess
that person has a family history of the same or similar type
                                                                  the likelihood of an inherited cause and the chance of
of cancer; or it could be a member of that person’s family
                                                                  other family members having the same condition and
who is being tested for the same gene variation. Testing is
                                                                  support the person to make informed choices about what
expensive and time-consuming and results can potentially
                                                                  to do next.
have far reaching consequences for the individual and their
family members. It is not something that is taken on lightly.     Genetic counsellors do not make decisions for you – their
                                                                  role is to provide information, answer your questions and

14 | Page                               www.cancervoices.org.au                             the Voice of People Affected by Cancer
support you to reach decisions which are right for you and       Further Reading
your family.
                                                                 The human genome project
Summary                                                          https://www.ted.com/talks/riccardo_sabatini_how_to_read_the_
                                                                 genome_and_build_a_human_being
While genetics remains just one of several factors that
contribute to people's risk of developing most common            Melbourne Genomics Health Alliance
                                                                 https://www.cancer.org.au/cancer-information/causes-and-
diseases, other factors such as diet, lifestyle, and
                                                                 prevention/family-history-and-cancer/genetic-testing
environmental exposures also come into play. A deeper
understanding of genetics can lead to more personalised          NHMRC Direct-to-Consumer Genetic Testing - A Statement from
treatment for people who have an identified genetic              the National Health and Medical Research Council (NHMRC)
variation and a better understanding of how all the various      NHS UK Genomics Education Programme      Hereditary breast
elements work together to affect the human body in both          and ovarian cancer www.hee.nhs.uk
health and disease.
                                                                                                          Kathryn Leaney

Cancer Institute NSW (CINSW) Update
                                                                 Education has developed a rapid learning module:
                                                                 Hypofractionated radiation therapy.
Cancer Conversations online webinars
                                                                 The module helps participants understand what
Connecting clinical stakeholders face to face has been
                                                                 hypofractionated radiation therapy involves, why it is
a real challenge in 2020 due to COVID-19. The Patient
                                                                 a safe and effective treatment option for early-breast
Experience Team have started hosting Cancer
                                                                 cancer and some localised prostate cancers, and the
Conversations, an online series of webinars held after
                                                                 benefits for people with cancer.
hours for health professionals to share knowledge,
learnings and opinions on the most current                       The online module covers:
information relevant to cancer treatment and care.
                                                                  • the differences between conventional and
In the November Cancer Conversations, Prof Tom                      hypofractionated radiation therapy
Marwick, Director of the Baker Heart and Diabetes
                                                                  • the clinical case for hypofractionation
Institute, A/Prof Eng-Siew Koh, Senior Staff Specialist
in radiation oncology and Professor Bogda Koczwara,               • how it is used to treat breast and prostate cancers
Senior Staff Specialist in medical oncology shared their
                                                                 Participants have described the course as “informative
insights on early detection of cancer cardiotoxicity
                                                                 and very easy to understand”, “quick and to the point”
including current evidence and ways to reduce the
                                                                 and “evidence based as always”.
effects. Seventy two people attended the webinar
and feedback on the event has been very positive. We             This online course is free and takes around 15 minutes
look forward to hosting several more throughout 2021             to complete. It is suitable for people looking to deepen
on a variety of topics. For more information, please             their understanding of hypofractionation radiation
contact cinsw-events@health.nsw.gov.au                           therapy and includes some technical concepts.
View the recording at                                            https://education.eviq.org.au/rapid-learning/topic-18-
https://www.cancer.nsw.gov.au/what-we-                           hypofractionated-radiation-therapy
do/events/cancer-conversations                                   For all the latest from Cancer Institute NSW go to
                                                                 https://www.cancer.nsw.gov.au/

New online learning: Hypofractionated radiation
therapy
Hypofractionated (“short course”) radiation therapy
has an important role to play in the treatment of
early-stage breast and some localised prostate
cancers. To increase this understanding, eviQ

Newsletter No 80 December 2020                      Published by Cancer Voices NSW Inc                                Page |
15
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