The Power of Advocacy a win for equitable treatment for the PKU Community

 Metabolic Dietary Disorders Association and PKUNSW Association are extremely pleased with the decision of the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the listing of Kuvan (sapropterin hydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for all Australians living with phenylketonuria (PKU) who are responsive to this treatment. Whilst we are disappointed with the outcome that Palynziq was a rejection for listing on the PBS, we will continue to advocate on behalf of all eligible Australians with PKU for access to this treatment with the Australian Government.

We want to thank each and every one of you that lent your support in our campaign to secure subsidised access to Kuvan.

With the support of our PKU community, we have been actively campaigning for a number of years to secure access to all treatments that have been approved as safe and effective by the Therapeutic Goods Administration (TGA). This welcome result has been the result of extensive political, media and public advocacy by our PKU and broader metabolic dietary disorders communities.

We want to thank each and every one of you that helped to achieve this important outcome, Whether you raised the issue with your Federal Member of Parliament, shared your story of living with PKU with media, or talked about the issue with your family and friends to raise awareness of PKU, this has been an enormous effort and you should feel proud of the part you have played.

We also want to thank everyone who submitted a consumer comment to the PBAC about how important it was for our PKU community to get access to safe and effective treatments on the PBS.

We look forward to keeping you updated of when you can expect to see Kuvan (sapropterin dihydrochloride) listed on the PBS for PKU.

Information regarding the PBAC outcome and brief summary can be found here.