Be an Advocate

Everyone can be an advocate

Whilst Cystic Fibrosis Australia is the peak body for Australians living with cystic fibrosis (CF), many voices are always greater than one.


Advocating can include using your voice, physical presence, energy, time, and/or resources to support issues and policies that align with your values and vision. 


We often hear people suggest there is ‘nothing I can do’. However, this is far from true. Simply sharing your story as to how CF has affected your life is supporting advocacy. Here is a suggested list of ways you can help support our advocacy work: 


  • Talk with friends and family about cystic fibrosis and the challenges the community is facing, and encourage them to advocate as well. 
  • Reach out to your local MP. If you are unsure who that is, you can look them up on the Australian Electoral Commission Website
  • Contact Senators and Members to share your story, clearly explaining why change is important to you, and what you need them to help support. 
  • Write Letters to Government Officials. Avoid using a template. A personally written letter with your own story, the challenges you face, and how the person you are addressing the letter to can help, will always be more powerful. 
  • Share Social Media Posts and Communiques by Cystic Fibrosis Australia with your network to raise awareness. Make sure you tag politicians, media outlets or any stakeholder relevant to the messaging so they are alerted to it. 
  • Read and research about the topics and issues you are connected to. Continue to learn, relearn and stay open to what processes are in place. 
  • Reflect and be self-aware of issues globally. 
  • Share your story with Cystic Fibrosis Australia. As the peak body, being able to share real-life stories/faces with stakeholders at a national level is crucial for ensuring our messages are well-received. 
  • Support Cystic Fibrosis Australia by donating. Donations help ensure we can continue to advocate nationally for the many challenges our community face. 
  • Host or participate in events that raise awareness for cystic fibrosis. Events in a comfortable social setting are a great way to start a conversation with someone who may not understand what cystic fibrosis is. 
  • Connect with Cystic Fibrosis Australia and see if there are ways to work together to achieve outcomes.

Advocacy can be difficult and it can often take years to see change. During these years, ensure you are practicing both self-care and collective care.


Advocating for others, or advocating for your own illness can be tiring, but adapting self-care techniques is also important to ensure a balance between mind, body, and spirit during these tough times. Collective care is seeing wellbeing beyond an individual’s responsibility, but caring for the wellbeing of everyone, knowing we need one another for our work to be sustainable.  

PBAC Consumer Comments

The primary avenue through which the government subsidizes the expense of medications within the community is the Pharmaceutical Benefits Scheme (PBS). Inclusion of a medication on the PBS is contingent upon the recommendation of the Pharmaceutical Benefits Advisory Committee (PBAC), an independent panel comprising health professionals, consumer representatives, and an industry representative.


Legally mandated, the PBAC assesses applications for PBS subsidy by considering the clinical effectiveness, safety, and cost-effectiveness (value for money) of the medication in question relative to other available therapies. The PBAC convenes three times annually, typically in March, July, and November.


Whenever a treatment is scheduled for review on the PBAC Agenda, the opportunity for Consumer Comments becomes available to the public. During this period, input from patients, caregivers, healthcare professionals, consumer groups, organizations, and members of the public is encouraged. This phase is pivotal, providing everyone with the chance to submit their comments regarding how the specific treatment will impact them. It is crucial to bear in mind that the PBAC is already equipped with statistical data related to the treatment; therefore, public submissions serve as a means for the PBAC to gain insights into:


Detailed lived experiences: daily challenges, symptoms, and emotions. Your narrative helps decision-makers comprehend the true realities of living with CF.

Highlighting the Need: Emphasize the challenges associated with CF and articulate why improved access to treatment is significant for you and your community. Your voice plays a crucial role in conveying the importance of enhanced treatment options

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