Breaking News: Kuvan to be listed as a treatment for children and adolescents living with Phenylketonuria – PKU in Australia
After years of hard work and proactive campaigning led by MDDA with the support of PKU NSW and a number of key associated organisations and individuals – we are thrilled to advise of today’s positive outcome for the PBAC listing of Kuvan for children and adolescents with PKU in Australia. This is an amazing accomplishment (especially after an initial rejection way back in 2011), and we have much hope that is just the first step in the process of working towards gaining access to Kuvan for all ages.
Please find the full announcement and Kuvan Factsheet below under resources and we will keep you informed once further information comes to hand on initial accessibility and testing.
As an association reliant primarily on the dedication of our hardworking volunteers, the entire PKU community of Australia should be forever grateful for the unwavering persistence and commitment of MDDA Vice President Louise Healy who‘s personal commitment and contribution to this project has gone way above and beyond. From the initial approach to Biomarin to convince them to submit through to ongoing communication, advocacy and education of key ministerial and PBAC decision makers. Collectively we have had a loud voice, but the true megaphone of this campaign has been Louise, so thank you from us all.