How your voice
We speak out for our community across all levels of government. We seek meaningful change by calling for improvements to existing policies, developing new ideas, adopting innovation, and representing the ‘voice’ of those with kidney disease – especially when things aren’t working.
We highlight the need for more attention and investment in tackling chronic kidney disease. This spans funding and partnerships, as well as professional education of the medical and clinical community.
At Parliament House, Canberra on World Kidney Day, Thursday 9th March 2023, we launched a ground-breaking new report that highlights the issues and solutions. Kidney Health Australia commissioned Deloitte Access Economics to prepare a report on the economic cost of chronic kidney disease in Australia in 2021 and the return on investment that could be achieved through early detection and best practice management of CKD. The report was prepared by Deloitte Access Economics throughout 2022 in collaboration with Kidney Health Australia and consultation with ANZDATA, AIHW and members of Kidney Health Australia’s PEAK group.
Driving National
Action on Kidney
Disease
In 2018, we were commissioned by the Commonwealth Government Department of Health to develop The National Strategic Action Plan for Kidney Disease. A crucial part of our work is ensuring the recommendations are implemented.
As well, we advocate for the most vulnerable in our community, including:
- First Nations Australians
- those that live in rural and remote regions in Australia
- young people who are affected by kidney disease.
We push for the provision of equitable health care for all Australians, culturally appropriate care, and strong and effective representation. Click below for read more in our patient charter.
Key Advocacy Platforms
We work to prevent the development of chronic disease, partnering with alliance members to encourage healthier food choices through better food labelling, increased physical activity, better programs and more active living spaces, and through targeted campaigns against things like high salt, high sugar and tobacco use.
We strongly advocate for early detection of kidney disease through identification of high-risk individuals along with improved health checks. We work to highlight the need for more attention and investment in tackling chronic kidney disease in Australia’s national strategies, funding, and partnerships, as well as through professional education of the medical and clinical community.
Since 2018, we have conducted consultations with First Nations communities around Australia to develop a framework for evidence-based guidelines that are specific to the management of kidney disease within their communities, and will deliver better health outcomes.
Further Federal Government funding will enable us to develop appropriate clinical guidelines that are aligned with first nations’ community preferences and needs. Read more about our Yarning Consultations.
A great deal of our work also involves supporting those on dialysis, as well as carers of those living with end-stage kidney disease. At Kidney Health Australia, we advocate for increased home dialysis support, better dialysis provision, improved transport support and availability, access to carer support and payments, increased respite services, and accommodation subsidies to cover time away from home for training and dialysis. The National Strategic Action Plan outlines the issues affecting Australians on dialysis.
An estimated 700 young people between the ages of 18-24 in Australia live daily with end-stage kidney disease. They face unique challenges due to their age and the impacts of chronic illness on their life and development. These include disruption to growth, education, social development and life participation – all of which are exacerbated when they transfer to adult healthcare.
Thanks to a Federal Government grant in 2018, and the valuable contribution of a Clinical Advisory Group below, which was established for the purpose, we launched a consultative process in 2018 and 2019. The goal was to plan programs and resources that would ensure the transition from paediatric to adult healthcare is an easier one. We conducted dozens of surveys, consultations and focus groups to determine what kidney youth and their carers want most from our programs.
Organ donation and live organ transplantation are critical issues for those living with kidney disease. At Kidney Health Australia we work with the Australian Organ and Tissue Authority (DonateLife), all Governments and health organisations to continue to push for increases in Australia’s organ donation rate. Kidney Health Australia a strong advocate for live organ donors and live organ transplantation.
We have successfully advocated for the Supporting Leave for Living Organ Donors Scheme, which provides 9 weeks of paid leave (based on a 38 hour week) of leave, at an amount up to the National Minimum Wage, for organ donors who require time away from work to donate. In 2017 the Federal Government announced that it will continue the Support for Living Organ Donors Program for another four years, including expansion to include some out-of-pocket costs for donors, enabling donors who are not employed to participate.
Kidney Health Australia unequivocally supports ‘The Declaration of Istanbul on Organ Trafficking and Transplant Tourism’ (the Declaration), which includes condemning the practice of buying and selling organs for transplantation and other illegal activities related to transplant tourism. You can read our position statement here.
Kidney Health Special Interest Groups and Consumer Engagement Program
The Kidney Health Australia Special Interest Groups and Consumer Engagement Program aims to amplify the voices of people living with kidney disease, and foster support and improvements in treatment and care.
