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.
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.
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.
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.
The Medical Services Advisory Committee (MSAC), provide independent and expert advice to the Minister for Health in regard to new services to be funded under the Medicare Benefits Schedule (MBS). Currently, “Application No. 1600 – Genetic testing for inherited kidney disease (other than Alport syndrome)” is under review. As part of the review process MSAC welcomes input from patients, families, carers, healthcare professionals and consumer interest groups.
As part of PKD Australia’s advocacy work we submitted a consultation document to MSAC, which can be read here. Additionally, we called on our community to have their say by personally writing to MSAC and on behalf of the estimated 25,000 patients living with Polycystic Kidney Disease in Australia, PKD Australia, undertook a survey on Genetic Testing to determine the community support for MSAC Application No. 1600. The quick uptake of the survey shows the strong engagement of the PKD community in their/their family’s welfare and the strong support for MBS funded genetic testing for inherited kidney disease was encouraging. We hope MSAC will recognise this in their deliberations. The results of the survey can be viewed here.