Sector unites to launch blueprint for reform as first-of-its kind lung cancer report exposes the disjointed care, depression & discrimination having a devastating impact on patients
- As half miss out on better outcomes, experts urge investment in specialist nurses to improve care pathways: one in five living with lung cancer receive no treatment while only one in two treated receive best practice care through multidisciplinary teams (MDT).1
- Understand gaps in care, screen, refer and act: 50% of Aussies living with lung cancer (6,200) are dealing with anxiety, distress, and/or depression, which worsens their quality of life.1
- Adopt reforms that shift perceptions from stigma to support: judgement of many is negatively impacting perceived worthiness of support and care, outcomes and quality of life.1
- One Australian dies from lung cancer every hour. The burden is set to climb: By 2028, the cost of lung cancer will reach $6.6 billion, as 160,000 Australians will have been newly diagnosed, and a total of 268,200 will live with lung cancer.1
SYDNEY, 24 OCTOBER 2018: Today, Lung Foundation Australia is urging the nation’s decision makers to adopt key reforms to address the disjointed care, mental health issues and stigma plaguing Australians living with lung cancer that has been exposed in the first-of-its-kind report: Making Lung Cancer A Fair Fight: A Blueprint for Reform, also launched today in Parliament House, Canberra.
The new report, developed in collaboration with PricewaterhouseCoopers (PwC), paints the clearest picture yet of the true burden of lung cancer in Australia, now and over the next decade, hones in on the confronting challenges facing those living with lung cancer, and importantly, outlines solutions to improve outcomes that are currently far from what is possible.
“This report has uncovered what we have long suspected: Australians with lung cancer face set-backs at every turn, from delays in diagnosis and staging, to inadequate referrals to treatment, to the stigma which blights their condition, not to mention the elevated psychosocial needs of this community and lack of support, and the disparity in care those in regional and rural areas experience,” said Mark Brooke, Chief Executive Officer, Lung Foundation Australia.
“Every Australian is entitled to the same public access to diagnostics, treatment and care – regardless of the disease they have, the cause of their cancer or their place of residence.
“That is why we’ve launched this report. We have a responsibility to make lung cancer a fair fight, and can no longer accept inaction,” Mr Brooke continued.
Inadequate access to quality diagnostics and care is worsening outcomes1
The report sheds light on delays in diagnosis, which can lead to diagnoses in late stage disease, poor access to lung cancer clinical nurse specialists (CNS) and therefore care pathways, and inadequate referrals to multidisciplinary teams (MDTs), as primary challenges to treatment and care.1
With an absence of lung cancer CNS’s nationwide, who can ensure personalised care, 20% of those diagnosed with lung cancer never receive any form of treatment. Furthermore, less than half diagnosed are treated via MDTs, despite proven links to better quality care and survival outcomes. And despite advances in treatment, almost one third (28%) of patients are never staged, and therefore, may never start on the most appropriate treatments for their disease.1
For those in regional and rural areas – the challenges are amplified. Almost a third (29%) of people living with lung cancer live in regional areas, yet 49% are diagnosed with advanced lung cancer (stage III-IV). Fewer oncologists, fewer services, and travel for care hinders access. Over the next 10 years, out-of-pocket travel costs for these regional / remote Australians will reach $36.3 million.1
However, earlier diagnosis and treatment can improve outcomes and survival rates.1
“We must improve access to quality diagnostics and care to improve health outcomes for Australians living with lung cancer across the country,” said Dr Emily Stone, Thoracic Physician St Vincent’s Hospital Sydney and Kinghorn Cancer Centre.
“That is why this report encourages the Australian Government to fund more lung cancer clinical nurse specialists and to increase access to multidisciplinary team care in local health districts, as well as facilitate earlier referrals in addition to GP education in regional areas.”
Insufficient psychosocial support sees 50% distress, anxiety and depression rate that’s abnormally, and unacceptably, high1
Half of Australians living with lung cancer experience distress, anxiety, and / or depression, and there are insufficient services available to support those who need it.1
What’s more, the prevalence of anxiety and depression in the lung cancer community is, on average, 30% higher than other major cancer types. This further highlights the specific need for psychosocial support for those living with lung cancer.1
“Clearly, we can, and must, do more to support Australians living with lung cancer mentally and emotionally, on top of improving access to best practice care to manage their lung cancer,” said Dr Nicole Rankin, Cancer Council NSW, Senior Research Fellow, and Sydney Health Partners, The University of Sydney, and Honorary Affiliate, School of Psychology, Faculty of Science, The University of Sydney. “The recommendations, as outlined in the report, aim to ensure thorough screening of all lung cancer patients to better determine individual psychosocial support needs, complete mental health plans and then refer for help as early as appropriate.”
The responsibility to provide better psychosocial support services does not lie solely with the Commonwealth. State and Territory Governments need to assess and better understand current gaps in care and invest in improving the availability and capacity of psychosocial support services in local health districts, including telehealth options for those in regional and remote areas.
Stigma, from all facets of society, is a major barrier to care
Australians with lung cancer experience high levels of stigma in society, from their health providers, employers and even themselves. In fact, healthcare professional attitudes are as negative as those of patients, carers and the general public. Approximately 30% of people living with lung cancer blame themselves for their diagnosis.1
This sense of guilt may result in delays to diagnosis and treatment, resulting in diagnoses when a persons’ lung cancer has advanced and when the chances of survival decrease. The report also revealed that some people hide their disease from family and friends – a lack of support which may contribute to emotional distress.1
“Reducing lung cancer stigma may help to also reduce associated negative outcomes,” said Dr Rankin and Dr Stone.
“That is why the report recommends, as an initial step, that lung cancer specific training be explored and it be added to medical workforce curriculum as part of mandatory healthcare professional education to promote awareness and provide strategies to shift perceptions away from stigma.”
The report also highlights the need to better fund public awareness and education campaigns, to drive support, understanding, and empathy at a community level.1
Approximately one fifth (21%) of those with cancer are life-long non-smokers.1
Burden of disease and economic cost of Australia’s leading cause of cancer death is growing
This year, approximately 12,741 Australians will be diagnosed with lung cancer, and half of them (6,200) will develop anxiety and / or depression. Lung cancer has the lowest five-year survival rate of the five most commonly diagnosed cancers at 17%, meaning 9,198 will die from the disease. With the economic cost of lung cancer reaching $297.2 million in direct and indirect costs in 2018, this will skyrocket to $6.6 billion in a decade.1
Urgent intervention needed now to stem future burden
With population projections and new incidences of lung cancer growing at a similar rate, Lung Foundation Australia can reveal that by 2028, there will be 160,000 new diagnoses of lung cancer, 131,400 of which are likely to experience anxiety or depression.1 In 2028, a total of 268,200 Australians will live with lung cancer.
“Despite recent advances, lung cancer continues to have the lowest survival outcome and some of the worse co-morbidities of any of the top five most commonly-diagnosed cancers. For too long, the true extent of the burden on the community, and on society, has remained under acknowledged. This must change now,” concludes Mr Brooke.
It is Lung Foundation Australia’s hope that the Making Lung Cancer A Fair Fight: A Blueprint for Reform report will provide the impetus needed to put the burden of lung cancer back on the radar of all who can come together to improve outcomes: Government (state and federal), medical community, lung cancer community, the Australian public, and media. If adopted, the recommendations outlined will ensure we make great strides forward to better support Australians living with lung cancer.
Mike Lane / Mike@oprlife.com.au / M: 0409 666 022
Alexandra McInnes / Alexandra@oprlife.com.au / M: 0404 767 998
Making lung cancer a fair fight: A blueprint for reform – recommendations at a glance
Based on identified need and challenges, the report expert Steering Committee developed a set of recommendations, collaboratively, to improve health outcomes and quality of life for people living with lung cancer in Australia. Further detailed and potential actions under each recommendation are documented in Chapter 4 of the full report. In summary:
Improve quality diagnostics and care:
- Australian Government to fund more lung cancer clinical nurse specialists to assist people to navigate best practice care pathways to improve outcomes.
- Increase access to multidisciplinary team (MDT) care in local health districts, and facilitate earlier referrals and GP education in regional areas
Shift perceptions away from stigma:
- Increase education on the needs of people living with lung cancer and disease complexities in medical workforce training and curriculum, with strategies to improve outcomes
- Fund a public awareness campaign that encourages Australia to “give everyone a fair go”
Address the need for psychosocial support:
- Screen all people living with lung cancer to understand individual psychosocial support needs, complete mental health plans and refer patients for help as early as appropriate
- State & Territory Governments to better understand current gaps and invest in improving the availability and capacity of psychosocial support services in local health districts (including telehealth options for those in regional and remote areas).
1. Making Lung Cancer A Fair Fight: A Blueprint for Reform. Lung Foundation Australia. October 2018.