Advocacy

PKD Australia is bringing the community of PKD families together across the country for support and education and to advocate for the many families that are affected by this disease that currently has no cure.

At PKD Australia we represent and express the needs of patients and families to the government, researchers and pharmaceutical industry. We take every opportunity to bring PKD to the attention of the media, government, healthcare professionals and the public.

The documents listed in this section represent our advocacy work and responses to public calls for submissions on a range of issues facing people living with PKD, their families and their carers.

Action Plan for PKD

Following our meeting in August last year with the Hon. Greg Hunt, Minister for Health, PKD Australia has developed an “Action Plan for critical change in Polycystic Kidney Disease outcomes in Australia” in collaboration with patients and clinical and research healthcare professionals to aid in the fight against PKD in Australia and provide policymakers with pathways to address the burden of PKD on the individual, family and the healthcare system. These initiatives can be categorised into a Key Framework: Prevention, Management, Support and Cure. We are hopeful for a commitment, by the government to the initiatives set out in this Plan which is available to read here.

TOLVAPTAN PBS Listing

As part of the process of having Pharmaceuticals listed on the Pharmaceutical Benefits Scheme (PBS) Pharmaceutical Benefits Advisory Committee (PBAC) carries out its own, independent assessment in evaluating a medicine’s clinical effectiveness, safety and cost-effectiveness for treating Australian patients and welcomes input from patients, families, carers, healthcare professionals and consumer interest groups.

As part of PKD Australia’s advocacy work, we called on our community to have their say by writing to the PBAC. PKDA also directed a joint submission to the PBAC with Kidney Health Australia which is available to read here. The strong support for a treatment to be made available in Australia was encouraging and weighted heavily with PBAC.

Getting Involved

With so many people and groups competing for the attention, it is critical PKD patients make their voices heard. We encourage people with PKD and those who care about them to share their personal story and speak with your local representative as just one story or one relationship can make a significant difference.