Every four days, a child is born with Cystic Fibrosis. There are over one million carriers in Australia alone and most are not even aware that they carry this life shortening genetic condition.
Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families.
Cystic Fibrosis Australia funds research into better treatments and ultimatley a cure for CF. We also manage the CF data registry, lead the national research program, conduct a biennial CF Conference, and support the quality improvement program including the clinic peer review program and the CF Standards of Care and Infection Control Guidelines.
Most importantly we advocate on behalf of the CF Community. We raise awareness through sharing the stories of the CF Community and lobby local, state and federal Governments and Pharmaceuticals to provide access to the best possible treatments and care.
The members of Cystic Fibrosis Australia are our State and Territory Organisations whom provide much needed services and information to the CF Community.
Services vary across States and Territories depending on availability of funding, gaps in health care service provision, capacity and need. These include counselling, information workshops and seminars, case management, comprehensive home care services and professional development for allied health personnel, financial support to take part in physical activities, information on cystic fibrosis for key milestones in a persons development such as, for newly diagnosed parents, for teenagers transitioning from a children’s hospital to an adult hospital and issues people face as an adult CF.
Latest in Advocacy - Bronchitol and Orkambi
This July two cystic fibrosis drugs will be reviewed for reimbursement by the Pharmaceutical Benefits Advisory Committee (PBAC). Because access to these drugs and treatments is vitally important for the cystic fibrosis community, Cystic Fibrosis Australia is running an advocacy campaign to make sure the PBAC Committee and Federal Government understand our position.
Make your voice heard and add your comments to the PBAC Portal before it closes on 7 June
http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form
Let your Local Members or Senator, local newspaper, TV and radio stations know why access to these drugs is a must.
· Australians with CF need access to life-changing treatments to extend and improve life
· Orkambi tackle's the disease rather than just CF symptoms
· Clinical trials showed that…
- 96 week trial outcomes … Orkambi showed a reduction in lung damage 40% less than general CF cohort
- LUNG FUNCTION was preserved and further decline was halted, relative FEV1 increased by 4.8% and a sustained improvement was evident…
- EXACERBATIONS reduced, as did hospitalisations and antibiotic use.
- Reduced Exacerbations by 39% Hospitalisations by 61% Antibiotic use reduced by 56%
- NUTRITION improved, as did BMI and diabetes is less likely or less severe symptoms will be experienced.
- MENTAL HEALTH and QUALITY OF LIFE improved. Social inclusion, employment and education participation increase. Personal and family stress was reduced resulting in less depression/anxiety for patients, parents and support networks
About Bronchitol by Pharmaxis
- Bronchitol portable mucus clearance agent (inhaled mannitol powder)
- Bronchitol is available on the PBS but it can’t be used in combination with nebulised Pulmozyme which is also on the PBS
- People with CF must access to the best most effective medicines
- For many with CF a combined Bronchitol and Pulmozyme regime is most effective
- The CF community want access to both PBS funded Bronchitol and PBS funded Pulmozyme. Patients should be able to use a combination of both treatments.
- Every individual should have access to a variety of treatments which are tailored to their disease and situation.
- Bronchitol has been studied in over 1000 CF clinical trial patients. Bronchitol has been shown in those people
- to be safe
- to significantly improve mucus clearance
- to significantly improve lung function
- to reduce exacerbations of their lung disease.
- The Bronchitol delivery devise (a small handheld inhaler) is compact, portable and easy to use
- Currently, the only way to access Bronchitol (if a patient is using Pulmozyme) is via a compassionate use program
- Compassionate access can make prescribing complicated for clinics and patients
- Many people are not offered Bronchitol as a treatment option.
- Pharmaxis is the small Australian company
Upcoming Events:
Families affected by CF and health professionals are encouraged to access services available from each of the CF organisations.
Or visit the CFA page for more on research and advocacy.
