WHY is it UNFAIR?

There is an approved medicine available for PKU patients in Australia, but it’s not available to PKU adults. Why can’t this treatment be available to everyone with the disease?

Why should PKU adults only have HOPE that one day they can access new treatments?

Currently there is only one medicine listed on the PBS for people with PKU aged under 18 years (since 1 May 2019), and for pregnant women/maternal PKU (since 1 July 2021).

 

Advocacy – You Can Make A Difference!

TODAY the only available treatment option for adults with PKU is to adhere to a strict, lifelong, low-protein diet. This is despite research finding that the majority of adults are unable to adhere to such a strict diet and managing PKU with diet alone does not lead to optimal patient outcomes.

MDDA’s position is that all Australians living with PKU should have access to all treatments that have been approved as safe and effective by the Therapeutic Goods Administration (TGA). This means that Australian clinicians should be given the choice of selecting the treatment that best meets the needs of each individual patient and will lead to optimal treatment outcomes – without limitations or restrictions.

MDDA strongly advocate & support access to all approved treatments for PKU Adults. Read MDDA’s full announcement and statement regarding the recent PBAC listing here.

There are many things that you can do to help to Make Some Noise for PKU.

 

Sapropterin and Pegvaliase Announcements – What’s Next?

 

1. Raise Your Voice to the PBAC

PBAC Comments are now CLOSED. The outcome will be announced August 19th 2022 – stay tuned to MDDA’s socials for latest updates. 

2. Raise Your Voice to your local Federal Member of Parliament (MP)

How to contact and what to say to your MP

3. Raise Your Voice to your local media

Reach out to your local media and share your PKU Story or Great Protein Challenge journey

4. Raise Your Voice and Sign Up For The Great Protein Challenge

Now extended through June! 

I would hope that the new treatments would assist me to make it easier to achieve better phenylalanine blood levels as mine are always up and down. I’d hope for a much more even levels.

PKU Australian MDDA Quality of Life Survey