Make Some Noise Campaign For PKU Adults
Starting in April 2022, MDDA ran a 3-month campaign to advocate equitable access to medications for PKU adults here in Australia. In the lead up to the PBAC’s July 2022 Meeting, MDDA led a campaign strongly advocating for both sapropterin dihydrochloride and pegvaliase to be listed on the PBS for adults with PKU.
This campaign was about highlighting the inequities that come with having a rare disease such as PKU and not having access to all available treatments to help ease the burden. Whilst this is not the norm for all people with PKU, it is certainly a very true representation for many that are struggling with the day to day management and living with their PKU.
View the messages below that made up this campaign:
WHY is it IMPORTANT?
PKU is for life, and it is extremely important to stay on top of managing the condition because uncontrolled it can have consequences on one’s health and wellbeing.
WHY is it HARD?
The current treatment for PKU adults is a strict life-long diet of low protein foods that is difficult to manage and can also still not be enough without access to more treatments.
Don’t believe us?
Take the Low Pro Challenge and see for yourself.
WHY is it UNFAIR?
Kids have medicine available to them, but adults are denied the same treatment. We need PKU medication to be available to everyone with the disease.