There have been some amazing developments in treatment of cystic fibrosis over the last few years, changing the lives of those living with the condition.
A couple of years ago, the world exploded with the release of Kalydeco. It was a drug aimed at certain CF gene types (there are many types out there, so this drug wasn’t suitable for everyone)
It is a little pill that treats the underlying cause of cystic fibrosis rather than just the symptoms. The results of the drug were ground-breaking and life changing. People taking the drug were showing lung function improvement of up to 65% and had a new lease on life.
The downfall of such an amazing drug was the price. The cost of Kalydeco was around $300,000 a year! It simply wasn’t affordable.
After much lobbying and petitions, the Australian government approved Kalydeco on to the Pharmaceutical Benefits Scheme (PBS) which caused a sigh of relief around the country as the drug became much more affordable.
Fast forward to 2016, and another drug has hit the market. This one is called Orkambi, which is aimed at another gene type. Our family is excited about this one as it is aimed at Cameron’s gene type! This drug is expected to help almost half the Australian CF population. It has similar effects as Kalydeco
Again, the downfall is the price. Orkambi is currently about $260,000 a year!!
There was a recent petition to have it placed on the PBS list to make it affordable for everyone. However in the “wisdom” of the Australian government, they REJECTED the bid, claiming it was not “cost-effective”.
I don’t understand how they could think this? It is improving quality of life. It is improving health, which means less of other medications, less treatments, less time in hospital. Surely that all adds up in the end?
So the petitions are starting again. Click here to sign and help show your support.
This drug is important and needs to be made more affordable! Lives depend on it!