Advocacy

Lung Foundation Australia plays an important role in advocating for greater effort and resources into promoting lung health and advocating for those affected by lung disease.

The community is well aware of the messages to protect their heart health, their skin health and their breast health.  Greater effort must go into communicating the important message about protecting lung health.

The Lung Foundation also advocates for better access to evidence-based programs for those with lung disease.

National Strategic Action Plan for Lung Conditions

Lung disease affects one in four Australians1 and is the second leading cause of death2, yet it struggles to receive the publicity, funding and support required to reduce its impact.

Lung Foundation Australia, together with the support of the Australian Government Department of Health, is working to change the future of lung disease in Australia by developing the first National Strategic Action Plan for Lung Conditions.

This national plan will define the priorities and actions required to improve lung health and reduce the impact of lung disease on individuals, the community and the economy.

We are inviting a wide range of individuals and organisations to be involved in the consultation process. If you would like to influence the future, find out more, here.

 

1 AIHW, 2016, https://www.aihw.gov.au/reports/australias-health/australiashealth-2016/contents/chapter-3-leading-causes-of-ill-health
2 Lung Disease in Australia, 2014, Woolcock Institute of Medical Research

Lung cancer medications being considered for reimbursement

Lung Foundation Australia advocates for affordable access to new and proven medications for people living with a lung disease, and strongly encourages the patient community to have their voice heard in the process.

At the July 2018 Pharmaceuticals Benefits Advisory Committee’s (PBAC) meeting three lung cancer medications are being considered for reimbursement including:

  • KEYTRUDA (pembrolizumab) for the treatment of patients with metastatic non-small cell lung cancer.
  • TAGRISSO (osimertinib) for the treatment of locally advanced or metastatic EGFR, T790 mutation positive non-small cell lung cancer
  • XALKORI (crizotinib) for the treatment of locally advanced or metastatic non-small cell lung cancer with a ROS1 Gene rearrangement

As part of the PBAC process, patients, carers, community members and health professionals are encouraged to make submissions in support of the listing. The consumer voice is very important in this decision-making process and we hope you will help advocate for affordable access to lung cancer medications. It is not difficult to make a submission and you will not be expected to know the details of any particular medicines. What the PBAC are interested in is how lung cancer is affecting you, your family and loved ones.

Please ensure you make your submission to the PBAC by Wednesday 6 June 2018.

Details on what the form looks like, how to complete some of the specific fields, and the kinds of things you might consider including in the form are attached in the two documents.

PBAC Consumer Input Guide - May 2018 (326 KB) PBAC Meeting Agenda and Consumer Comments (326 KB)

A simple step-by-step guide detailing the submission process to support you has been put together by lung cancer patient and advocate, Lisa Briggs:

Lisa Briggs - PBAC tips and ideas (1 MB)

The Outcomes of the PBAC meeting will be available on the PBS website six weeks after each PBAC meeting. For more information, please contact enquiries@lungfoundation.com.au or 1800 654 301.

Parliamentary Friends of lung health

In 2017, Lung Foundation Australia held two Parliamentary Friends of Lung Health events to bring key opinion leaders, including politicians and members of parliament, together with patient advocates and clinicians.

Turning the spotlight on rare lung disease

This Parliamentary Friends event aimed to raise awareness about the impact of rare lung diseases, particularly in children, and the steps required to build a framework that will allow equitable access to care, treatment and support.

Understanding is rare, lung disease is not

Results from the national consumer survey on stigma were released at a Parliamentary Friends of Lung Health event on 26 October. This event officially launched Lung Health Awareness Month and focused on raising awareness amongst our nation’s politicians and key opinion leaders about lung disease and the prevalence of stigma in our society

Occupational lung disease

Lung Foundation Australia, together with the Thoracic Society of Australia and New Zealand, advocated for a centralised national occupational lung disease register through a submission to the Senate enquiry on Coal Workers Pneumoconiosis (black lung).

Funding for research into cancers with low survival rates

Lung Foundation Australia, together with key clinicians and patient advocates, participated in the Senate Select Committee enquiry into Low Survival Rate Cancers. Together we made recommendations to improve access to funding, research, education, medication and support for people with low survival cancers.

Department of Health round table discussion

Lung Foundation Australia and the Department of Health hosted a Lung Health Round Table discussion which bought together representatives across different lung diseases to identify practical clinical interventions to improve patient outcomes. A suite of recommendations were developed and will be sent for consideration to the Australian Health Ministers Advisory Council.

Enquiry into the Use and Marketing of Electronic Cigarettes

In a submission to the Senate Enquiry on the Use and Marketing of E-cigarettes and Personal Vaporisers, Lung Foundation Australia and Thoracic Society of Australia and New Zealand urged the government to take a precautionary approach to e-cigarettes. The evidence for their use in smoking cessation is not at all clear which is why we are suggesting that, like all other cessation products, they be regulated by the Therapeutic Goods Administration (TGA) and that ongoing trials be conducted to continue to review their safety and efficacy.

Download the full submission: TSANZ-LFA-e-cigarette government submission

Federal Budget Submission

Lung Foundation Australia’s Federal Budget Submission for 2018-19 urged the government to ensure lung disease receives the funding and support needed to reduce its impact as the nation’s second leading cause of death. The submission outlined six high-priority and cost-effective actions that will transform the lives of those affected by lung disease. To view the full budget submission, click here or download below.

Lung Foundation Australia Budget submission_FINAL (2 MB)

Pharmaceutical Benefits Scheme listings

Lung Foundation Australia continued to play a role in advocating for affordable access to new and proven medications for people living with a lung disease, such as lung cancer, Chronic Obstructive Pulmonary Disease (COPD) and Idiopathic Pulmonary Fibrosis (IPF).

Pulmonary rehabilitation MBS listing

Lung Foundation Australia invited key federal Members of Parliament to visit their local pulmonary rehabilitation class to see first-hand the benefits patients receive from participating in this program. This formed part of our advocacy work supporting our application to the Medical Services Advisory Committee (MSAC) for pulmonary rehabilitation programs to be subsidised on the Medicare Benefits Scheme (MBS), submitted in December 2014. An outcome is expected in late 2018.

Improving outcomes for Australians living with lung cancer – A Call To Action

Every day in Australia, 25 people die from lung cancer while another 34 people are diagnosed with this devastating disease. It is our nation’s leading cause of cancer death, killing more people than breast, prostate and ovarian cancers combined.

 Lung Foundation Australia has identified four areas where some of the most significant obstacles facing a person with lung cancer must be addressed.

Lung Foundation Australia calls on funders, policy makers, clinicians, other stakeholders and the wider community to help us improve outcomes for those who are currently battling lung cancer and for those who will be diagnosed with lung cancer in years to come.

LFA improved outcomes Flyer A4 0816-web (257 KB) Lung Foundation Australia - Improving outcomes for Australians with lung cancer - A call to action (2 MB)

Lung Foundation Australia e-cigarette position statement

Lung Foundation Australia E-Cigarettes Position Statement 18 June 2014 (185 KB)

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