Lives unaffected by cystic fibrosis


Global Study Reports Updated COVID-19 Outcomes in People with CF >
RELEASED by the Cystic Fibrosis Registry Global Harmonization Group
9 November 2020

COVID-19 Policy Information

As Australian State and Territory hospitals and our National Health System prepare for potential surges in COVID-19 cases and a heightened demand for intensive care, many are creating priority services and equipment guidelines to help hospitals decide who receives care.

Our healthcare planners are demonstrating great commitment as they design these care pathways, using frameworks that guide decisions about who gets varying levels of attention based on an individual patient's ability to benefit from a particular treatment.

However Cystic Fibrosis Australia’s position is clear … 

  1. any plan that uses outdated or inaccurate information to disadvantage people with cystic fibrosis (CF) is unacceptable and
  2. every CF patient needs an individualised assessment to evaluate treatment options. 

Cystic Fibrosis Australia is actively working to educate policymakers and ICU and ED clinicians about how CF has changed and why the mere presence of CF should never disqualify someone from receiving lifesaving care. 

Cystic Fibrosis ID Card

If Australia continues to have success in flattening the COVID-19 curve then we will never reach the point where our hospitals are forced to refuse service to sick individuals. Everyone is working for a 2020 in which ICU beds and Ventilators remain available in some capacity for everyone who really needs them. 

That is what we are working for, but we must be prepared for other outcomes. And CFA has made it a chief concern in the last few weeks to keep our finger on the pulse of the CF/COVID co-morbidity situation.

We have had a lot of feedback from our experts to the effect that COVID-19 is extremely survivable for individuals with CF. The results both in Australia and internationally have been encouraging. 

The next stage of preparedness for Australians with CF is to make sure that they are visible to the health community and that doctors have the most updated knowledge of CF as a condition and the great strides of recent times. They need to know

  1. about the steady increase in life expectancies.
  2. about the increasing freedom from symptoms and restrictions that modern medicine has afforded us.
  3. that individuals with CF and COVID-19 are vulnerable but also eminently recoverable - this will ensure that tough decisions in the ICU do not go against us.

CFA believe a CF identification card is a simple and effective option for those who wish to make sure that your vital information goes wherever you do and that relevant experts can be contacted if you find yourself hospitalised unexpectedly.

With hospital systems under strain we need to give our people and also our healthcare workers every possible foothold. The right information when and where it's needed.

I urge you to click through the link HERE so that you can examine our CF ID Card and fill out your details to apply for one. When we receive your free application we will send you out a laminated CF ID Card with instructions for use. 

Alternatively, you can store the pdf from our website on your computer or phone. This card will mean that no matter what happens in the ongoing COVID-19 crisis, we can always have the last word on CF.