The independent cancer consumer advocacy movement in Australia has a proud record; one we think deserves to be noted by cancer professionals.
A hallmark of our achievements has been sharing with health professionals the common goal of working in the interests of improving things for people affected by cancer.
Consumer advocacy allows us to make a real and visible difference to the cancer experience of many, making sure the informed view of people affected by cancer is part of the decision-making mix. Some call this adding the ‘essential perspective’. And the evidence shows meaningful consumer engagement is a win-win for all, with improved outcomes and experiences for those affected by cancer and more trust and confidence in the health service.1
Consumers working with cancer professionals
Readers who have been around as long as I have, will know of cancer consumer organisations popping up when and where we felt the consumer voice needed to be heard, or when you felt it should be. Many in the Clinical Oncology Society of Australia have welcomed our contributions to discussion and debate through a range of interfaces. These include conferences, committees, boards, consumer advisory groups and peer reviewed journal papers. You may also have worked with us when: we offer the consumer perspective to researchers seeking grants and on the 14 Clinical Trials Groups; collecting and presenting our research priorities; visiting politicians with you or joining debate in the general media. We thank you for your inclusiveness and for listening to us as the ultimate beneficiaries of all your work! It’s been a great and productive partnership.
Twenty unbroken years of cancer consumer advocacy is worth celebrating. It all began in Melbourne in 1994, and has diversified and flourished since then.
First steps to take-off
The Breast Cancer Action Group began it all and shaped the Australian model of volunteer, survivor-led cancer consumer advocacy. In 1994, Marcia O’Keefe, an engineer diagnosed with secondaries, wrote a passionate letter to The Age, calling on other women to join her. Founder of Breast Cancer Network Australia, Lyn Swinburne, remembers they agreed a support group was not for them: “We wanted action to make the system more responsive to our needs.” They developed a vision for getting consumer input into decision-making and the concept clicked.
As a harbinger of things to come, Breast Cancer Action Group’s first and very successful campaign was to get Taxol for breast cancer on to the Pharmaceutical Benefits Scheme. After Marcia’s death, Lyn and Sue Lockwood promoted the new concept, making sure people who would benefit were heard. They also realised that being up to speed and capable, networked with others in the same boat and independent, all led to credibility. Crediblity is essential if the consumer voice is to be taken seriously by stakeholders – government, cancer professionals, cancer charities, etc.
In 1995, the new National Breast Cancer Centre established a Consumer Advisory Group, inviting representative women form all states and territories to give them advice on their programs and resources. The centre later gave seed funding to help establish a nationwide organisation which could advocate for the issues and needs of women with breast cancer. The Breast Cancer Network Australia grew from a few in 1998 to 90,000 supporters today.
Meanwhile (1997), a group was set up in NSW, which became the Breast Cancer Action Group NSW, based on the Victorian model and sharing newsletters. Heady days for us all – topped by a memorable trip to Washington DC in 1998 to learn how it was done, with encouragement from Hillary Clinton.
If the medical community was not fully convinced of the latent power of consumer advocacy, all that changed in 2001 when Breast Cancer Network Australia led a campaign to have Herceptin made available without cost to women (HER2 positive) with advanced disease. The sponsor’s bid had failed the Pharmaceutical Benefits Advisory Committee process three times. It took the combined efforts of women around Australia to rally support via MPs, the media and people of influence to ensure access to this new drug.
Then in 2007, a record seven week campaign led by three passionate Breast Cancer Action Group NSW members successfully spearheaded a change in federal superannuation legislation, to allow access to superannuation tax free for people dying, at any age, of a terminal illness.
Consumer voice expands
This model was influential in how other cancer consumer groups came into being. Recognising most people with cancer faced similar issues, the Cancer Voices movement took off in 2000, initially in NSW and soon after in other states. In 2005, the movement established Cancer Voices Australia to provide a voice on national issues. Funded and housed by Cancer Council Australia until 2012, it is now independent. Cancer Councils have assisted consumer groups of various kinds and to varying degrees to find their feet, recognising the intrinsic value to their own work, as well as for the cancer and wider communities. For this the movement is very grateful.
A much larger group of organisations, the Australian Cancer Consumer Network, will be launched at Parliament House, Canberra on 26 November. The network will share information and ideas, alerts about Pharmaceutical Benefits Advisory Committee and Medical Services Advisory Committee agendas, and opportunities to participate in national cancer related inquiries. Most importantly, it will be able to muster an even louder voice on national issues if and when necessary.
Most Cancer Consumer Network groups are survivor-led, voluntary and represent a range of cancers, common and rare. A few come under the umbrellas of foundations and institutes with their own roles and funding sources, but which also facilitate a consumer voice. These differences need to be recognised. Fully independent consumers, financially and in purpose, cannot be accused of vested interests, except that they want the best for people with cancer. Strength through independence has proven very compelling, especially when talking to government and politicians.
What have we achieved?
From the beginning, the movement’s objectives have been clear: to improve the cancer journey and outcomes in the areas of diagnosis, information, treatment, research, support and care. We have worked in partnership with decision makers and service providers, ensuring the patient perspective is heard from planning to delivery.
Achievements have included improvements in:
- access to multidisciplinary cancer treatment and care
- the range and quality of information for cancer patients, including guidelines and directories of specialists
- support and survivorship services
- the direction and value of research
- funding for new comprehensive cancer centres
- programs for nominating capable consumer representatives
- capacity building through training in advocacy, representation and research
- access to superannuation tax free for all people dying of a terminal illness
- free matching service to researchers to help meet the requirements for consumer involvement of many cancer research funders.
Some priorities for 2015
Priorities are built on what people affected by cancer see needs to be addressed. They are regularly reviewed. For example, a national priority is working for better coordination of care. To reach this goal, we are advocating for guidelines or best practice statements, and to encourage jurisdictions to earmark funding for coordination services to help cancer patients to navigate the system’s maze. To help both clinicians and their patients, we would like to see the Australia-wide adoption of the Radiation Oncology Clinical Practice Standards, and their development for medical oncology. We are also working with the Cancer Drugs Alliance ‘think tank’ about how to arrive at the most effective health technology assessment system, especially for cancer.
What do we put in and get out?
We put in our passion, commitment, persistence and expertise (as consumers) – probably in equal quantities, well mixed to achieve a sum greater than its parts. Using our skills and personal experience, doing our homework, building partnerships and adding some effective training, we can and do build the capacity of our voices. In return, we reap the rewards of successful giving back, of improving the cancer journey for others like ourselves. There is a strong sense of camaraderie in working together for our common cause.
The nature of our disease means that we have lost a number of our best along the way. Improvement in cancer diagnosis and treatment over these 20 years has also meant that some of us gain more time, adding to experience and corporate memory. A challenge we must meet each year is to harness the commitment, passion and persistence of younger cancer consumers so the essential perspective continues to be heard.
Lastly, heartfelt thanks to the many supportive cancer professionals who have helped us along the way. We could not have grown and prospered without you. And thanks to all those people affected by cancer, the consumer side of the equation, who have given so much to our common cause since 1994.
And now for the next 20 years – let’s keep on making a difference together!
1. Cancer Australia and Cancer Voices Australia, 2011. National Framework for Consumer Involvement in Cancer Control. Cancer Australia, Canberra ACT.
First published in Cancer Forum, Vol 38 3 Nov 2014.
Vale Sally Crossing – ONA Editor 30th December 2016
Sally Crossing AM (1946-2016) was an inspiring tireless crusader and trailblazing pioneer for cancer advocacy at both state and national levels for the past 23 years.
Sally Crossing AM was Chair Cancer Voices NSW and Convenor, Cancer Voices Australia. Sally was involved in the Australian cancer consumer movement since 1997, and was diagnosed with breast cancer in 1995. In 2014 she received an Honorary Doctorate from the University of Sydney for “extraordinary leadership and contributions to supporting those with cancer from diagnosis, though treatment, care support and survivorship, in both advocacy and research”. She passed away peacefully in late December 2016.