The Pharmaceutical Benefits Advisory Committee have recommended that palovarotene be listed as treatment for Fibrodysplasia Ossificans Progressiva. This will enable reimbursed supply within Australia, and is a milestone for the treatment of FOP, and for progress towards a cure.
This decision means that for the first time ever, there will be a potential treatment available for people with FOP and their treating doctors to consider as an option to try to slow/reduce disabling bone growth.
Perhaps even more importantly, this decision also paves the way for consideration of PBAC approvals of other potential FOP drugs in the future. It also creates an important and unique opportunity for us to raise awareness amongst health professionals of the importance of recognising and diagnosing FOP.
We are expecting that the remaining processes required to set up reimbursement will be completed over the next few months. We will keep you updated as that progresses.
The stories of people living with FOP were crucial to this decision. We are deeply grateful to everyone who shared their words, experiences and photos to help PBAC understand what it means to live with FOP, and the importance of a treatment. This has helped regulatory bodies and decision makers learn not just about palovarotene, but about FOP itself, and about the need for more treatments in future. Thank you.
We would also like to acknowledge the support of Rare Voices Australia, Australian Patient Advocacy Alliance, Patient Voice Initiative, and also acknowledge the work of Ipsen, as the pharmaceutical company making the PBAC application.
Read more information about the PBAC decision in the November 2024 outcomes at:
