A Voice for People Affected by Cancer Published by Cancer Voices NSW Inc www.cancervoices.org.au Page 1

Message to Members "Each time a person stands up for an ideal, or acts to improve the lot of others, he sends forth a tiny ripple of hope, and crossing each other from a million different centres of energy and daring, those ripples build a current that sweeps down the mightiest of oppression and resistance." - Robert F. Kennedy. How true those words are and even though JFK didn’t survive long enough for his ripples to build into a current, many of our readers have and together our ripples are making some pretty sizable waves. Not the least of these is the NSW Parliament’s Legislative Council’s recommendation to legalise cannabis use for medical purposes. Readers will know that Cancer Voices for many years has supported the movement to make access to cannabis for carefully controlled medical purposes both legal and affordable. We warmly welcome the report whose principal recommendations are strongly in favour of making this possible, and clearly cognisant of the various arrangements which need to be made for their safe implementation. Sally Crossing and I were fortunate enough to be able to catch up with the Executive Committee of our sister organisation, Cancer Voices South Australia, when attending a CHF training course in Adelaide recently. A great bunch of people who made us very welcome - thanks CVSA! Cancer Voices Australia (CVA) is very active at the moment and working on several issues that could have big impacts for cancer consumers. CVA has welcomed CVN, its ”older sister”, to help its considerable activities on current national issues - more inside. This has worked well, and symbiotically where issues, like the Say NO to human gene patents campaign, originated here in NSW. We have a CVA update inside for more information including the launch of the exciting DISCOVER-TT - Discovering Indigenous Strategies to Improve Cancer Outcomes Via Engagement, Research Translation and Training. We have included for your information a Sydney Morning Herald article on page 12 which very clearly outlines where cancer research and treatment are right now, their development and future prospects. It is so useful we are keen to share it. We have a lot of good news from your Executive Team. And, we look forward to your feedback and stories, and of course welcome your input about any issues you feel need to be addressed in the cancer world. Whether they are local to you, state wide or national we will do our best to address them.

Warmest Regards, Kathy Smith, Chair

Newsletter 51 June 2013

A/Prof Michael Back (Director Cancer Services, Northern Sydney LHD), Kathy Smith, (Chair CVN) & Dr Campbell

Tiley (Director, Cancer Services, Central Coast LHD)

Jillian Skinner (NSW Minister for Health), Kathy Smith (Chair CVN) & Deborah O’Neill (Member for Robertson)

Cutting the ribbon at the opening of Central Coast Cancer Centre

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CVN NOTICEBOARD

Consumer Research Training – 2 & 3 August, 2013

Cancer Council NSW will be conducting, and Cancer Voices NSW will be participating in a workshop in Consumer Research Review Training over 2 full days (approx 9am to 5pm each day) in Woolloomooloo, a Sydney CBD location. The program includes presentations of the different research fields, as well as discussions about the consumer review criteria, processes and outcomes, and an opportunity to participate in a mock review panel. The aims of the workshop are to:

develop consumer reps for various roles in CCNSW‘s research portfolio, and

upskill CVN nominees to review/inform/advise a range of research projects

CVN encourages anyone who has an interest in the direction of cancer research to consider applying for this very worthwhile course. Closing date is 7 July, 2013 – Please apply ASAP

For inquiries and Expression of Interest (EOI) Form, please contact Sam Thorp, Community Engagement Officer, Research Strategy Unit, Cancer Council NSW; Download EOI from www.cancercouncil

com.au/research/research-profile Phone: (02) 9334 1445, Email: samth@nswcc.org.au

Consumer Advocacy Training (CAT) Courses – 19 & 20 July 2013

To help you speak up about issues affecting people with cancer. Would you like to be more effective in your advocacy and committee work?

CVN partners with Cancer Council NSW to run a 2 day Advocacy Training Workshop for CVN members, community members, and people with cancer (families and carers)

The workshop provides skills and tools to improve confidence to make a difference, and will equip you to :

Become active and effective advocates for better government cancer policies and services

Approach your consumer representative work more confidently

Understand how government works, and how you can influence decision-makers

To apply and to check venues, please refer to : <http://www.cancercouncil.com.au/advocacy-training> or contact Cancer Council NSW (Policy & Advocacy) on (02) 9334 1406

CHEMO COSTS WATCH Have you been charged more than once, or more than the standard co-payment

for any cancer-related drug, during treatment at public or private hospitals, as an outpatient? Let Cancer Voices know ASAP

This information will be most valuable for our discussions with the NSW Ministry of Health See Cancer Voices contact details on page 11

NO TO PATENTS ON HUMAN GENES CAMPAIGN Join us to stop biotech companies owning our genes!

Cancer Voices is calling for an amendment to the Patents Act 1990 to remove the ability to put patents on our genetic material

Decision-makers need to hear from lots of Voices! Our campaign will use a Petition to Parliament, social media, interviews, letters to Ministers and MPs… sign up at

http://www.change.org/en-AU/petitions/change-the-law-to-stop-patents-over-human-genetic-material

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CVN COMMITTEE NEWS CVN Executive Committee Your Committee met on 3 April, 2013 The Executive Committee welcomed Jan Mumford as a co-opted member of the Committee. Jan brings a great deal of experience in cancer consumer advocacy, and special knowledge of the needs and views of people with pancreatic cancer. Do let us know if you would like to be more closely involved in what we do – either at Executive, Policy, Communications or Consumer Representation levels. We realise active involvement is not for everyone. Many members tell us that they simply like to be kept in the loop about our advocacy. BUT, if you read something that stirs your interest, or have an issue that may affect many, let us know!

AWARD for Excellence in Cancer Consumer Advocacy This Award was presented to Jane Barrett at the important Cancer Council Research Awards presentations on 23 April. It was received by her partner Johnny Coomber. We reprint the address made by Sally crossing in her role as leader, Consumer Involvement in Research – See page 6.

Thanks to those who responded to our call for nominations to the 2013 Award. This is a very effective way for us to acknowledge our own outstanding members and advocates. Like Jane, they set examples of “best practice” consumer advocacy for us all.

Member Data as at 1 June, 2013

Voting Member Groups 73 Stakeholder Groups 315 Organisation Members 12

CVN CONSUMER REPS IN ACTION

“Nothing about us without us!” The June quarter has been a slower quarter re numbers of requests. We thank all those members who accepted CVN or CVA nominations, and make sure the consumer perspective is included by their services and research committees.

Overall Consumer Representation We service a total of 192 committees of different types. 81 nominated individual consumers sit on these committees for 57 different organisations. (This does not include the reviewing activities for organisations such as the Cancer Council NSW, NBCF etc).

Research Projects There are 112 individual research projects within 24 organisations for which CVN provides consumer input.

CVN ADVOCACY UPDATES

Opening of the Central Coast Cancer Centre 23 March, 2013 saw the official opening of the Central Coast Cancer Centre. Kathy Smith and Kimberly Bates, who both campaigned for this facility since 2007, were in attendance, as were the usual local politicians, the NSW Minister for Health Jillian Skinner, and Cancer Institute CEO, Professor David Currow. However, the star of the day was Carol, who was the first patient to be scheduled to receive radiotherapy at the Centre.

Kathy with Carol, first radiotherapy patient to be treated at the Central Coast Cancer Centre

Sally Crossing and Johnny Coomber

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This was a very important day for Central Coast cancer consumers who previously had to travel to Sydney or Newcastle for public radiotherapy treatment, or pay very high prices for private treatment locally. We received anecdotal evidence of an increasing number of people who made the dreadful decision to forego treatment due to lack of money to receive treatment locally, sickness/frailty, work or childcare commitments, etc which prevented them travelling for treatment. These people felt they had no option but to hope for time. All who visited the Centre commented on the welcoming, non-daunting appearance of the facility. From pelicans hanging from the two storey ceiling, the super graphics and the walls of windows letting in natural light, the reception area is appealing and relaxing. The wooden floors and ceiling panels ensure a warm atmosphere (even if you are being wheeled along corridors on a trolley). The equipment is state of the art, but we aren’t qualified to go into the technicalities of that here. Although there was some concern initially about the area being able to attract the professional staff required at this facility, there was an overwhelming response for the positions advertised. The Centre is fully staffed with highly qualified professionals.

Chemo co-payments CVN has again written to the NSW Minister for Health, together with the Breast Cancer Network Australia (BCNA) and the Cancer Council NSW (CCNSW). We are concerned there has been little progress about stopping excess co-payments for chemotherapy, and that complaints continue to be received.

Medical cannabis inquiry A win after many years’ advocacy! Following our submission to the NSW Legislative Council Inquiry, Sally Crossing was invited to address the Hearing on 11 March. Our participation and evidence attracted strong media interest to which we responded in the following days. CVN received several messages of congratulation on our position. The Hansard and Inquiry submissions are available by visiting website below. The subsequent NSW Legislative Council (General Purpose Standing Committee No 4) Inquiry report was released on 15 May. Its recommendations are very positive and can be seen in detailed and summarised

form on www.parliament.nsw.gov.au/gpsc4.

Easiest to Google directly! CVN responded to media interest from SMH, ABC Radio, Ch. 7 and the Newcastle Herald, supporting the report’s recommendations and their implementation. Chemo Funding The messy and opaque process by which hospital and private clinic pharmacists are funded to provide chemotherapy to cancer patients has been under the spotlight, most recently via a Senate Inquiry which reported 10 May. CVN, through Cancer Voices Australia has been closely involved – More on page 9.

Palliative Care CVN has formally sought the release of the Palliative Care Expert Advisory Group Report (in which we participated) report titled “Improving Palliative Care for People in NSW”: to the NSW Minister for Health, April 2012. This has been done under the relatively new Act, which replaces the Freedom of Information legislation. We believe the information gathered by this report is important for further policy decisions by Government, and for our own advocacy. The decisions regarding the extra funding for palliative care projects announced last year, have yet to be made public.

Palliative Care for Younger People CVN heard from a member about the difficulty for 18-60 year olds finding palliative care services of any kind. We are advised that palliative care hospitals offer maximum 2 week stays, and this age group does not qualify for the range of services available for older patients. CVN is looking into this disturbing issue. Please tell us of your experiences or knowledge of the system in this regard.

Dying with Dignity - A Bill for Rights of the Terminally Ill This Bill 2013 was introduced into the Legislative Council of the NSW Parliament as a Private Member’s Bill on 2 May, and is being debated. CVN has had a long standing interest in the issues it addresses. Some of us are active individual members of Dying with Dignity NSW. However we recognise that support for the issue and this Bill in particicualr should remain a matter for each of us to decide. If you would like to know more, and /or wish to support the Bill, go to www.dwdnsw.org.au/page/campaign.php.

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Say NO to Human gene patents campaign Spearheaded by CVA, with strong CVN support, this campaign has been very active over the last months. By visiting federal politicians of all persuasions we are encouraged by the general acceptance of the need to stop the patenting of naturally occurring human genetic material. We are now seeking the formal commitment of the three principal parties prior to the federal election in September. More on page 8.

Informed Financial Consent (IFC) CVN supports the national organisation Consumers Health Forum’s call for a national IFC standard to ensure costs transparency for patients. CHF’s consultations show that consumers want to receive information about all procedures associated with their treatment and their costs, right up front. The Ipsos Informed Financial Consent Surveys commissioned by the Dept. of Health & Ageing show that consumers face significant hospital costs and specialist gap fees that they are not always prepared for. Unexpected expenses were most common in relation to anaesthetics, pathology, and radiology. Sounds familiar? While this applies mainly in the private system, some nasty surprises also occur in the public.

Consumer Reps Programs

Consumer Involvement in Research (CIR) CINSW Consumer Appointments: CVN Executive Committee members, Tony Maxwell and Bridget Whelan have been appointed to two CINSW’s Research Committees – congratulations to both! A big challenge ahead! Cancer Voices was been invited to make a presentation to the University of Sydney’s Cancer Research Network’s Breast Cancer Special Interest Group on 23 May. Roberta Higginson did the honours. Cancer Voices SA Executive Meeting

Cancer Voices was been invited to make a presentation to the University of Sydney’s Cancer Research Network’s Breast Cancer Special Interest Group on 23 May. Roberta Higginson did the honours. Cancer Voices NSW & Australia have accepted an invitation to present to the Cancer Translational Research Conference in Newcastle in late July. This year’s Consumer Research Training Program will be held 2 & 3 August. This is an excellent course which we have supported and to which CVN has considerable input – so do sign up this year! See Noticeboard for details. “Graduates” of this very interesting 2 day course automatically join our database for possible nomination to a range of cancer research projects, by providing the views of consumers to researchers. Others interested in this area should visit www.consumerlearning@canceraustralia.gov.au This online course gives you a very good idea of what it’s all about – and the opportunity to work out what might interest you.

NBCF “Community Conversations” The National Breast Cancer Foundation (NBCF) has been funding research for 18 years. It has just released a study about the impact of that investment, and is now holding a series of meetings with consumers around Australia, and CVN / CVA members will be attending those in Sydney, Adelaide and Canberra. CVN has been discussing how best to understand consumer research priorities, based on our extensive work in this area.

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The Voices Being Heard The list below reflects activities of senior CVN members, some on behalf of Cancer Voices Australia. There are many others happening each month as our nominees work with stakeholder committees, working parties and Boards.

Major Meetings DISCOVER-TT Advisory Board, 10 March CHF Consumer Leadership, Adelaide 20-21 March Cancer Voices SA Exec Meeting, 21 March Gene Patents lobbying Federal MPs & Senators,

20 Mar, & NSW based MPs 7 Senators Apr-May Medicines Australia Dinner, 20 March Deloitte interview re e-health, 3 April Menzies School of Health Research, 22 April Cancer Institute NSW, 24 April Cancer Australia, 8 May Menzies School of Health Research, 13 May Prostate Cancer Foundation, 22 May

Communications Media interviews with CH10 TV, CH7 TV, ABC Radio, Radio Adelaide, Sydney Morning Herald, AAP, Global Mail, The Australian, Adelaide Advertiser, The Age, Newcastle Herald and local radio stations.

Presentations DISCOVER-TT Roundtable, 12 March Cancer Council Research Awards, 23, April USyd Cancer Research Network Breast Cancer

Special Interest Group, 23 May

Submissions Chemo Funding – CVA Supplementary Submission

to Senate Inquiry

Events & Forums National Indigenous Cancer Network Roundtable

2013, 12 March Central Coast Cancer Centre Opening, 23 March Senate Inquiry, Chemo Funding Hearing, 28 March Aboriginal Cultural Awareness, 11 April Pain Management Research Inst, 4 May Federal Health Minister’s Media Announcement

of PBS funding review, 5 May 4th Annual Australian Pancreatic Cancer Genome

Initiative, 11 May Medical Benefits Policy Project Workshop, 28 May Diagnostic Imaging and Informed Consent

Consultation, 4 June NBCF: Community Conversations, 5 June

Publications CVN members are frequently asked to provide informed consumer comment on drafts for publication by cancer and research organisations and Cancer Council, Cochrane Collaboration and various

university studies.

AWARD for Excellence in Cancer Consumer Advocacy Address by Sally Crossing, 23 April 2013

Thank you, Norman (Swan), who will be familiar with the recipient of this Award. His Health Report interview with Jane Barrett was broadcast 3 days before her death in July last year. And thank you Cancer Council NSW, our long term partner, for hosting the presentation of this Award for Excellence in Cancer Consumer Advocacy.

Most of this audience knows Cancer Voices and uses our matching service – whenever your project needs the input of an informed, trained consumer. The Cancer Council does the training each August and Cancer Voices does the rest – resulting in many happy “customers”.

Sally Crossing and Kathy Smith - Consumers Health Forum Leadership Workshop, Adelaide

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Very briefly, Cancer Voices began 13 years ago and provides the volunteer, informed and independent voice of people affected by cancer, in NSW and nationally. Our matching service, now national too, is part of our Consumer Involvement in Research Program. The AWARD recognises and celebrates individuals who exemplify the highest standards of successful cancer consumer advocacy. And cancer research underpins it all. Jane Barrett had the quintessential hallmarks of someone who truly deserves it. CV met Jane Barrett in late 2009. She was in some desperation following her diagnosis and treatment for cancer of unknown primary - CUP to its familiars, which had metastasised to her neck and surrounding lymph nodes. Jane was frustrated to discover that CUP seemed invisible, was information-poor, and not then on anyone’s agenda, despite having the fourth highest mortality rate of the cancers. Jane recognised the difficulties in gaining the attention of policy makers, clinicians, researchers, or even information and support providers, due to the nature of CUP. Or for finding others with it - but she was not deterred. Jane found us, and joined our Executive Committee to discuss what she was hoping to do – get CUP right onto those agendas. One of Cancer Voices’ roles is to help committed people with rare or orphan cancers, towards successful consumer advocacy. On her website Jane referred to Cancer Voices as a “home” and a “lifeline”. A professional health educator, Jane signed up for the Cancer Council’s excellent courses for consumers – both in advocacy and research training. She worked closely with us, in her words “to be part of a bigger proactive organisation to lessen the isolation of being a lone advocate”. We in turn gave her advice about who to turn to in the areas of cancer research, information and support, and the media – and that’s what she did, in spades. In a very short time, between 2009 and her too early death in 2012, Jane moved several mountains. Most striking achievements were: identifying the gaps in awareness, information and research and talking ‘those who can’ into doing. Getting published, filmed

and reported in mass and specialist media; encouraging and working with research organisations to take up CUP projects; establishing CUP Action and ensuring its sustainability, convincing policy makers to include CUP in their strategies – for a full list please visit the CUP Action website. So it is with great pride and pleasure that I ask Jane’s partner, Johnny Coomber, to accept this AWARD in recognition of her excellence in cancer consumer advocacy.

WHAT’S HAPPENING AT STATE LEVEL? CVN works with both the Cancer Council NSW (CCNSW) and the Cancer Institute NSW (CINSW), as the two principal state organisations working to make improvement in the cancer experience.

Cancer Council NSW (CCNSW) CVN’s Executive Committee met with the Executive of CCNSW on 22 Feb, our six monthly opportunity to update each other on issues of interest to people affected by cancer. CVN’s Memorandum of Understanding, first signed in 2003, was reconfirmed and signed off by Kathy Smith and CCNSW CEO, Regina Sutton. This has guided our relationship, and insured close collaboration over the years, and set the course for our productive relationship for the foreseeable future.

Cancer Institute NSW

Kathy Smith continues regular meetings with CEO, Prof David Currow to discuss and update re matters of outstanding interest to NSW cancer consumers. CVN is also in the process of updating its Memorandum of Understanding with the Cancer Institute.

No further report from CINSW this quarter.

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WHAT’S HAPPENING NATIONALLY?

Cancer Australia (CA) Better Data Cancer Voices welcome the Federal Health Minister’s announcement that $2.4m would be provided to Cancer Australia (CA) to begin better data sets for cancer. We are particularly keen about this initiative as we have been calling for it for some years, along with the Breast Cancer Acton Groups (BCAG) and Breast Cancer Network Australia (BCNA). The data will guide more accurate planning for supply of cancer services and cancer clinicians.

Current Issues CVA has raised several issues which have become important recently with CA and are continuing discussions as to whether CA may be able to take them on board. They are: Development of guidelines for best practice

management for those cancers which do not yet have any guidelines

A central place, preferably the CA’s website, for access to all authoritative Guidelines available,

Collection of reliable statistics re extent of private treatment (current sets are widely dissimilar), and

Assurance for patients attending private clinics and hospitals that treatment provided meets guidelines and protocols accepted for best practice.

CA Consumer Strategy Meeting CVA members have been invited to attend CA’s Consumer Consultation Day on 13 June in Sydney. CVN has also commented on the forthcoming CA Position Statement on Co-ordination of Care Principles.

Cancer Council Australia (CCA) CVA has worked closely with CCA on both the gene patents and chemo funding issues. We understand that new arrangements for consumer engagement by CCA are about to be released.

COSA Nomination to Luminous Award CVN has made a nomination to this COSA Award for journalists who write about oncology. We wish our

nominee the best of luck. COSA ASM 2013, November 2013 Cancer Voices SA will co-host with Cancer Council SA the Consumer Forum attached to this important annual conference for Australian cancer practitioners. CVSA will also celebrate their fifth birthday – having been launched at a COSA meeting in Adelaide in 2008.

Cancer Voices Australia

‘Cancer Voices is the independent volunteer voice of Australians affected by cancer since 2000’

We reproduce the May NEWS UPDATE from CVA for your information. This has been circulated to all national level stakeholders and CVA’s consumer network. The priority issues for CVA focus over the last few months have been –

Say No to Gene Patents Campaign Call for a Review of Chemotherapy Funding

Say No to Gene Patents Campaign CVA’s campaign is for an Amendment to the Patents Act 1990 to clearly exclude the ability to grant patents over any naturally occurring human genetic material has gathered momentum. Following our decision to concentrate efforts on legislative change, we found much public and political support. CVA visits to Canberra (20 March), and subsequent meetings and teleconferences with opinion leaders in the major political parties have indicated strong bipartisan interest and concern. The basic concept of the campaign is well accepted, and the commercial interests’ of the opposing position mainly understood.

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CVA will continue to circulate CVA’s Petition and collect

signatures for tabling in the House of Reps, continue to take advantage of media interest and

keep the issue in the public mind, keep tabs on progress by the US Supreme Court

decision due in August. Hearings to date show support for eliminating patents on human genetic material. A positive decision would have huge impact, and

seek to encourage a group of prominent Australian researchers who are willing to counter expected (and unfounded) threats that without patents, research in our country will cease.

Call for a review of Chemotherapy Funding Minister’s announcement of Review CVA welcomed Minister Plibersek’s 4 May announcement, to which we were invited, that there will be a review of how chemo is funded in Australia. This reflects CVA’s call to end the messy and opaque processes in place, as evidenced during the Senate Inquiry. CVA has called for participation in this review.

Senate Inquiry re Supply of Chemotherapy Drugs such as Docetaxel CVA participated in the Inquiry via two submissions, gave evidence at the 28 March Hearing, and responded to debate. The Senate Committee Report (10 May) recommended the Minister’s Review include examination of the Fifth Community Pharmacy Agreement (5PCA) with the Pharmacy Guild, as it relates to chemo drugs pricing.

CVA supports the report’s further recommendation that the 5PCA, supported by $15.6b public money, is referred to the Australian National Audit Office. CVA regrets the Guild CEO’s attack on health consumers peak body, the Consumers’ Health Forum of Australia (CHF). Briefing Stakeholders CVA has widened its reach by inviting stakeholders to keep in touch and discuss consumer issues with us. This is possible due to assistance with a growing database, and by interest from cancer organisations. Let us know if you or your colleagues would like to receive this advocacy update regularly. Communications Both Facebook and Twitter accounts are closely monitored and regularly updated. Invitations to speak are coming in from conferences, research groups and cancer organisations. CVA Spokespersons have featured in print, radio and TV coverage, and media releases are distributed about national issues relating to people affected by cancer. CVA website’s capacity is being increased. Matching program for consumer representatives To lodge a request for a consumer nominee, go to http://cancervoicesaustralia.org/consumer_reps_3.html POST SCRIPT : Cancer Voices welcomes the Federal Budget addition of $226m to a range of Cancer Projects & Services.

DISCOVER-TT - (Discovering Indigenous Strategies to improve Cancer Outcomes Via Engagement, Research Translation and Training program) The project’s aim is to build an evidence base through innovative, high quality, priority driven, applied health services research which aims to reduce disparities in treatment and survival for Indigenous Australians with cancer. The DISCOVER-TT Centre of Research Excellence is funded by a $2,499,998 grant over 5 years (2013-2017) from the National Health and Medical Research Council (NHMRC). It is based at the Menzies School of Health Research in Brisbane and involves a partnership of people and organisations from across Australia and beyond.

Tanya Plibersek (Minister of Health) & Kathy Smith at the Minister’s media announcement

of the review of chemotherapy funding

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Advisory Board members not present are – Ms Pat Anderson AO (Lowitja Institute)and Professor David Roder

(University of SA)

Kathy Smith was invited to sit on the Advisory Board of the project, and CVA are partnering with the project to source and provide advocacy training courses to Aboriginal cancer survivors in each state and territory in order to encourage and empower other survivors to speak out about the good and the bad of their cancer experiences. It has long been an idea of Kathy’s that the Aboriginal cancer community become an active and effective force by forming/joining a Cancer Voices organisation to address the needs of cancer patients in their communities. This is a project that Kathy and CVA are enthusiastic and excited to be involved with. We will keep you posted in future Newsletters as this project progresses and grows.

BITS & PIECES

Federal Budget Boosts Cancer Programs A $226 million package to improve cancer prevention, detection, treatment and research is one of the few new spending measures in a tight health budget. These included:

o $18.5 million for research on the disease. o $16 million for bowel cancer screening,

allowing screening for 70 year olds from 2015 o $56 million to expand the age range for breast

cancer screening for women aged 70 to 74 o $19.5 million to continue the work of o McGrath Foundation Breast Care nurses. o $24 million for bone marrow transplants, o $18 million for CanTeen’s work providing

treatment and support for young people

o $6 million for improved lung cancer $2.4 million for Cancer Australia to address gaps in cancer data and improve survival rates.

o $30 million on additional dispensing fees for chemotherapy drugs over the next six months while it conducts a review of how these

services are funded BREAST CANCER NETWORK AUSTRALIA TO HOLD FIELD OF WOMEN 2013 in Sydney Breast Cancer Network Australia (BCNA) is the peak national organisation for Australians personally affected by breast cancer, and consists of a network of more than 75,000 individuals. Breast Cancer Network Australia (BCNA) is thrilled to announce it will be partnering with the AFL to present Field of Women 2013 in Sydney on Saturday 10 August, prior to the Sydney Swans Vs Collingwood Match at ANZ Stadium. The Field of Women brings the statistics of breast cancer to life in a meaningful and visually powerful way, highlighting the personal impact of breast cancer on our community. 15,000 people wearing pink ponchos and 125 in blue ponchos will stand together on the field in the shape of BCNA's Pink Lady silhouette. They will represent the number of Australian women and men who will be told they have breast cancer this year. BCNA and the AFL hope Field of Women 2013 will engage the community, raise awareness of BCNA and its services, and also raise significant funds for BCNA’s ongoing work for Australians affected by breast cancer. BCNA has previously partnered with the AFL to present the Field of Women in 2005 (MCG), 2007 (Telstra/ANZ Stadium) and 2010 (MCG). Ticketing details will be released at a later date, however people wishing to register their interest in attending the event can do so at www.bcna.org.au See www.bcna.org.au for further information or to register interest in attending.

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Contact CVN

PO Box 5016 Greenwich 2065 info@cancervoices.org.au

Website www.cancervoices.org.au Cancer Voices on Facebook

via facebook.com/cancervoicesnsw OR the Facebook icon on website

www.cancervoices.org.au

Cancer Voices NSW provides the independent voice of people affected by cancer in NSW to improve the cancer experience of the 40,000 people who are diagnosed each year

Established in 2000, we focus on the areas of diagnosis, information, treatment, research, support and care To achieve this we work in partnership with decision-makers and providers of these services,

ensuring the patient perspective is heard, from planning to delivery

THANKS !

Cancer Voices NSW greatly appreciates the assistance given by Sally Crossing (Editor),

Barb Galvin (Formatter), Elisabeth Kochman (Proof Reader, and Cancer

Council NSW for printing & posting Cancer Voices Newsletters.

Who Do Consumer Reps Represent?

Cancer Voices NSW operates on Best Practice Principles of Consumer Participation (See Position Statement on our Website). When we nominate you as a Consumer Representative, it means we

have confidence that you will be able to offer the broad view of people affected by cancer – as best you can – not just your own individual view. You are taking a place on a committee with a cancer consumer perspective – ie representing the needs and interests of people affected by cancer. You are not expected to offer a CVN organisational view, only the Chair, or delegated Office bearers

need to do that, and very occasionally.

OBJECTIVES OF CANCER VOICES

o To reduce the impact of cancer on the community, in terms of lives affected and lives lost o To promote a balanced public awareness of cancer

o To define the issues that are important to cancer consumers and to advocate for measures to address them

o To work towards ensuring access to the highest quality treatment and support services for people with cancer, regardless of their geographical location, social or economic status,

ethnicity or stage of disease o To encourage, and to provide a facility for, those with experience of cancer to contribute to

all levels of decision-making about the disease o To influence the direction of research into causes, prevention, optimal treatments and

support o To provide a forum for people affected by cancer to share experiences and information

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