Orkambi PBAC Portal: 24 Hours to Go!

Have you had your say on the PBAC Portal?

Have you supported people with CF who have two copies of the F508del mutation?

Have you spoken up for both the 6-11 year olds and those who are 12 years and older?

If not then you have only 24 hours left!

The whole process takes five minutes but remember to complete two submissions … one for Orkambi 12+ years and one for the 6-11 year olds needing ORKAMBI.

It’s important to state that the younger people get access to ORKAMBI, the better the health outcomes and life expectancy.

Here is the link to the PBAC
Here are some key facts and messages we have prepared

One of the key messages we need to get across is that Australia professes to have one of the best health systems in the world – so why have America, Germany, Austria, Italy, Denmark, Ireland, Greece and The Netherlands got access to ORKAMBI and Australia has not?

And as we want the PBAC to consider the ‘portfolio’ funding solution we need to support this so that people with CF get access to new and improved drugs in a timely manner in the future. We can’t continue to go through this long drawn out process and PBAC rejections while people’s health is declining dramatically.

The current situation is a health peril as lung damage is a key ‘death indicator’. ORKAMBI preserves lung function and halts further decline. Importantly the 96-week trial outcomes clearly showed that ORKAMBI slowed lung damage by an average of 40%.

As the clock is ticking, please take time for your CF community and let the PBAC realise how important it is for people with CF to get access to the best drugs and treatments.


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