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Let’s Make Some Noise for PKU
Just because it’s rare, it doesn’t have to be unfair.
PKU is not a fad diet. It’s not a choice.
It’s a reality for over 1,300 Aussies, there is NO cure.
We call ourselves the Guinea Pig age… [having access to these treatments for adults] would change my life and the life of every other adult in Australia living with PKU
– Con, PKU Adult
Over the past few years, we’ve seen advancements in the treatment of PKU in Australia, BUT challenges and inequities remain for PKU Adults.
Join our advocacy efforts, let the decision makers know that PKU Adults need subsidised access to all treatments that are safe, effective and registered for use in Australia.
Living with PKU is more than just being careful about what you eat. The effort it takes to stay on diet is invisible, the day-to-day treatment avoids something horrible, brain damage…
To the outside world PKU Adults are ‘normal’, however the dedication and persistence required to maintain the strict diet regime is truly highlighted when starkly contrasted with that of a non-treated PKU individual.
In Australia, the only currently available treatment option for PKU Adults is through adhering to a strict, lifelong, low-protein diet.
ABOUT PKU
PKU (phenylketonuria) is a rare genetic disease affecting approximately 1 in 10,000 babies born in Australia every year. Since the mid 60’s PKU has been detected via the newborn screening heel prick test given to every baby within 72 hours of birth. There is no cure for PKU, a strict and vastly limited diet, supplement and 1 medication provided to a select small number of patients is the only way to manage the disease and avoid irreversible brain damage and other neurological and psychological health complications. To read more about PKU click here.
History of Make Some Noise
To make sure that all Australians living with PKU should have access to all treatments, MDDA ran a 3-month campaign focused on advocating for both sapropterin dihyrochloride and pegvaliase to be listed on the PBS for adults with PKU.
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