Cystic Fibrosis (CF) is the most life-limiting, inherited genetic disorder affecting Caucasian populations; it has multisystem involvement and most notably affects the respiratory and gastrointestinal systems, recognised by recurrent chronic airway infection, malnutrition and eventually premature death.
The 8th Biennial Australasian Cystic Fibrosis Conference was attended by hundreds of delegates from Australia and New Zealand and had many invited international guests and keynote speakers specialising in all aspects of CF care. This year's conference coincided with the 20th anniversary of discovering the CF gene which has lead to a vast improvement in the understanding of CF.
The conference was also the platform for launching Cystic Fibrosis in Australia 2007; which was the 10th Annual Report from the Australian Cystic Fibrosis Data Registry. Since the registry was started in 1998, the report clearly indicates an improvement in the outcome of Australians suffering from CF over this time.
The conference was attended by healthcare professionals, research scientists, and lay members of the CF community. Offering specialist sessions in areas of Medical/Scientific, Allied Health and Nursing through to lay programs, the conference ran over four days, with up to five concurrent sessions. Delegates were presented with programs which covered such information as the special interest group meetings, oral abstract presentations and poster discussions. Question time was given to all speakers throughout the conference.
The conference theme 'Finding a Balance' was captured well by Claire Wainwright, Chair of the organising committee, who spoke of balance as an extension from those who deliver healthcare to people with CF, to those who live with CF. In considering the balance of benefits of care with their impact and cost, families living with CF need a balance between healthcare requirements and participation in research, activities of daily living, and their life and family goals. The CF professionals need balance with ongoing management of infection and inflammation, investigation and treatment choices, research opportunities and integration of working within a multidisciplinary team. The balance for researchers is to gain support while resources are limited and government funding is limited to costs versus resource allocation.
The theme was highly fitting and paved the way for a meeting of high calibre professionals to share with their colleagues over the next four days, a plethora of knowledge, understanding and better practice in treatment of CF.
Several invited international guest and keynote speakers were present; namely Professor Eric Alton (Royal Brompton Hospital, UK), Valerie Hall (Nurse Consultant/ Practitioner, Belfast City Hospital, Ireland) and Professor Alexandra Quittner (University of Miami, USA).
In addition to his role as an honorary consultant physician at Royal Brompton Hospital, Eric Alton is also a Professor of Gene Therapy and Respiratory Medicine at the National Heart and Lung Institute, Imperial College London.
Over the last 15 years, Eric has been involved in developing gene therapy for CF. He co-ordinates the UK CF Gene Therapy Consortium (UK CFGTC) which includes 80 clinicians and scientists who share a common focus on the issue.
Eric discussed four main issues; genetics, airway biology, infection and inflammation from the perspective of the CF patient and how this has made a clinical impact. Survival in the CF population has been focused on airway biology, inflammation and infection and though there have been incremental improvements in survival, this is at the burden of drug therapies. These are 'Low Hanging Fruit'! Eric stresses that genetics is the future, and through gene therapy the gene maybe be replaced or mended. Continual efforts will be made for this to be a viable and workable treatment. We must aim for 'High Hanging Fruits!' More information on Eric and his work with the Consortium can be found at the following URL: http://www.cfgenetherapy.org.uk/.
The quality of work presented from Australia and internationally was both relevant and highly educational, with quality speakers who were specialists in their respective fields. As CF requires a multidisciplinary approach from experts in areas of medical, nursing and allied health, it was also very encouraging to see that all were well represented at the conference.
The CF Conference was a very informative and worthwhile experience and would be beneficial to paramedics interested in the myriad disease processes, latest treatments and future direction of this illness which would lead to best pre-hospital care of these patients.
The 9th Australasian Cystic Fibrosis Conference will be hosted in Melbourne in 2011.
Sarah is currently enrolled as an Honours student in Emergency Health (Paramedics) at the Department of Community Emergency Health and Paramedic Practice, Monash University, Melbourne, Australia.
"8th Australasian Cystic Fibrosis Conference ‘Cystic Fibrosis - Finding a Balance’Sofitel Hotel, Brisbane Central, 29 August – 1 September 2009,"
Journal of Emergency Primary Health Care:
3, Article 9.
Available at: http://ro.ecu.edu.au/jephc/vol7/iss3/9