fbpx

Advocacy

Advocacy

Advocacy involves raising awareness of needs and influencing positive change.

Individuals and families with CF are often strong self-advocates, to ensure they receive the best care possible. We can assist with advice around navigating the health or education system and engaging with other government or non-government support services.

We also advocate to state and federal governments for changes to policies, systems and funding so that everyone with CF receives better care and support. This involves engaging with members of Parliament and the media.

Individuals with CF and parents and carers can nominate as a community advocate or consumer reference group member to help inform and support priorities.

You can also share your story and what matters to you.

Current Campaign Priorities

Updated or New Adult CF Outpatient clinic

To ensure West Australian adolescents and adults with CF receive the recommended standard of care, Cystic Fibrosis WA is advocating for an updated or new Adult CF Outpatient clinic (to replace the current SCGH outpatient clinic).

Since the change in WA Government in March 2025, we have written to Hon Ministers Meredith Hammat and John Carey and met with Parliamentary Secretaries and policy advisers on a number of occasions. We joined forces with a group of community leaders to again escalate this issue. We collaborated with the health service on a business case which has now been submitted to key decision makers.

You can read the most recent letters below and write to your local member or the Minister to let them know how important this is.

If you would like to support us by writing a letter, now is the ideal time. There is also an advocacy letter template further down.

Access to Diabetes Subsidy Schemes and Equipment for Over 21 Years

Up to a third of people living with CF suffer from diabetes however accessing financial support is difficult as the cause of diabetes is usually cystic fibrosis-related (CRFD) vs Type 1 diabetes.

Working with the fellow CF organisations nationally, we are advocating for access to subsidised diabetes management support for adults with CFRD including the Continuous Glucose Monitoring (CGM) subsidy. Currently, only those with CFRD under 21 years of age are eligible for free access to CGMs through the National Diabetes Support Scheme. This exclusion leaves an estimated 500 Australians with CFRD unable to effectively track and manage their diabetic control without an additional significant financial burden.

We support the call for expanded access by CF Australia.

Current Petitions

There are no current petitions to Parliament. These will be added here when available.

Writing to Members of Parliament

Writing a Letter

If you would like to push for change, you can write a letter to your local member or the Minister. This guide can help but sharing why the topic is important to you and how you’d like them to support is most important.

Advocacy takes time. It can be a long process to create change.  If you do not receive a response first time, follow up with the person you sent the letter to and ask if there is any update or if there is anyone else you should be addressing your letter to. This highlights the importance of the issue.

Where to Send Letters

Contact details for members of Parliament are on these official websites.

Complaints

When you have a very specific concern regarding your care, you can lodge it with Care Opinion which is monitored by health services. This is an independent site where anyone can share experience or report complaints regarding health, aged care and community services in Australia.

CFWA Feedback

To contact or provide feedback to CFWA click here.

CFWA Advocacy News
Advocacy
Adult CF Clinic Facilities – Current Advocacy Priority

One of our current major advocacy priorities is the need for investment in WA hospital facilities to treat adults with CF. The current facilitates at…

Advocacy
CFRD Petition – Submissions Close 12 March

People with Cystic Fibrosis-related Diabetes (CFRD) deserve lifelong support—yet the NDSS cuts off assistance at age 21, leaving adults at risk. Please sign our petition…

Advocacy
Equitable Access to the NDSS for People Living with CFRD

Sign the Petition: Fair access to diabetes care for people living with cystic fibrosis. No More Cut-Off at 21! People with Cystic Fibrosis-Related Diabetes (CFRD)…

Advocacy
Parliamentary Friends of CF Group

It has been a very busy time of advocacy, as CFWA works closely with CF Australia and fellow Federation members to keep the CF community…

Advocacy
Rachel Rogers: Taking Advocacy Into Your Own Hands

Rachel Rogers tells us how she made important changes at her daughter Mary’s school to benefit the health of all students. Rachel has championed proper…

2026 © Cystic Fibrosis Western Australia Privacy Policy | Refund & Delivery Policy | ABN: 19 156 339 182