Advocacy and submissions - An overview

As the national peak body for people living with kidney disease, and their families and carers, we promote good kidney health through the delivery of programs in education, advocacy, research and support.

The way we’ are doing that is by developing and driving initiatives to ‘Prevent, Detect, Support’, which has become our catchcry.

The documents listed in this section represent our written responses to public calls for submissions on a range of issues facing people living with kidney disease, their families and their carers. They complement our ongoing and detailed advocacy with federal, state and territory governments.

Further information about recent announcements on health policy can be found in our Media section here.

Summary of submissions

We have set out submissions which represent our written responses to public calls for submissions on a range of issues facing people living with kidney disease, their families and their carers. They complement our ongoing and detailed advocacy with federal, state and territory governments. These submissions can also be found in relevant categories in this section.

Calendar year 2016

Kidney Health Australia Pre-Budget Submission 2016-2017 Federal Budget.
February 2016
Charting a comprehensive approach to tackling kidney disease. Proposals to guide increased risk assessment, support early detection and improve the treatment of kidney disease. 

Chronic Kidney Disease (CKD) is a major health problem, and one that is growing. Without greater focus from the Australian Government, there is clear evidence based on current trends that the situation has the potential to worsen. Kidney Health Australia estimates that 1 in 3 Australians are at an increased risk of developing CKD. Approximately 1.7 million Australians – a striking 1 in 10 – over the age of 18 years have at least one clinical sign of CKD.

You can download this submission here.

Kidney Health Australia Pre Budget Submissions - State Budgets 2016-2017.
In addition to the Federal Budget Submission we provided each State and Territory Government with pre-budget submissions tailored for each jurisdiction. These submissions cover the “Enable” (Home Away from Home Haemodialysis) Scheme, the various patient travel schemes, and home rebate levels. 

Australian Capital Territory - download here
New South Wales
 - download here
Northern Territory - download here
Queensland - download here
South Australia - download here
Tasmania - download here
Victoria - download here
Western Australia - download here

Calendar year 2015

Kidney Health Australia welcomes the opportunity to respond to the Government’s review into Private Health Insurance.
December 2015
There are a number of issues regarding Private Health Insurance that impact upon people with Chronic Kidney Disease (CKD) and in particular people with End Stage Kidney Disease (ESKD).

Read the full submission here.

The impact of increased power costs on home haemodialysis in the Australian Capital Territory.
October 2015
The purpose of this discussion paper is to illustrate the potential impact of increased power costs on the number of people choosing to undertake or remain, using home haemodialysis within the Australian Capital Territory (ACT).

Read this submission here.

Kidney Health for All: A report on policy options for improving Aboriginal and Torres Strait Islander Kidney Health.
September 2015
This report is informed by Kidney Health Australia’s World Kidney Day Leadership Breakfast and Policy Roundtable, and provides an overview of the issues experienced by Aboriginal and Torres Strait Islander people with kidney disease. A range of policy-focused recommendations are provided for consideration by the Federal Government, State and Territory Governments, key health organisations working in Aboriginal and Torres Strait Islander health and the kidney community.

You can read this report here.

NVDPA - Submission to the Standing Committee on Health inquiry into best practice in chronic disease prevention and management in Primary Health Care. 
August 2015
The NVDPA welcomes the opportunity to make a submission to the Standing Committee on Health Inquiry into Best Practice in Chronic Disease Prevention and Management in Primary Health Care. This paper presents an integrated approach to detect and prevent vascular and related diseases in Australian general (medical) practice. Its key feature is to move away from disease specific detection in primary care to an integrated approach which recognises the interaction between these diseases and their risk factors.

You can read this submission here.

Submission to the Australian Vigilance and Surveillance Framework for Organ Donation for Transplantation (the Framework).

July 2015
The draft framework underpins a national vigilance and surveillance system that complements and operates in parallel with jurisdictional clinical incident management systems for deceased organ donation and transplantation; provides early warning systems; monitors, records and analyses SAERs and the impact of an intervention; improves patient outcomes; and informs future organ donation for transplantation management and health policy.

You can read the submission here.

ACDPA - Response to the Australian Government’s Re:think Tax discussion paper.
June 2015

The Australian Chronic Disease Prevention Alliance (ACDPA) welcomes the opportunity to respond to the Australian Government’s Re:think Tax Discussion Paper. ACDPA’s interest in this review relates to the potential impact of changes to the taxation system on the nutritional and physical activity behaviour of the population, and the consequent long-term health outcomes for Australia. 

You can read this submission here.

Position Statement: Removal of Cinacalcet (Sensipar) from the Pharmaceutical Benefits Scheme.
June 2015

The statement outlines the situation regarding the recent changes to Cinacalcet (Sensipar) and a Pharmaceutical Benefits Scheme subsidy.

You can read our full position statement here.

Kidney Health Australia State of the Nation 2015 – Chronic Kidney Disease in Australia.

May 2015
This report paints a striking picture of Australia’s kidney health, highlighting kidney disease as a silent killer that goes largely undiagnosed, and often works in partnership with cardiovascular disease and diabetes. The report highlights two confronting facts: less than 10 per cent of Australians with chronic kidney disease realise they have it; and 51 per cent of people with chronic kidney disease also have cardiovascular disease or diabetes. The report also shows that six out of ten people with chronic kidney disease have hypertension but 96 per cent of Australian adults are unaware of the link between high blood pressure and kidney disease. 

You can read the report here.

National Vascular Disease Prevention Alliance  - Submission to Australian National Diabetes Strategy.
May 2015
The National Vascular Disease Prevention Alliance (NVDPA) have put in a submission to the Federal Government’s draft Diabetes Strategy outlining the need for an integrated health check to improve early detection of vascular disease.

You an read this submission here.

The impact of increased power costs on home haemodialysis in Tasmania.

February 2015
The purpose of this discussion paper is to illustrate the potential impact of increased power costs on the number of people choosing to undertake or continue using home haemodialysis in Tasmania.

You can read the submission here.

The impact of increased power costs on home haemodialysis in Queensland.

February 2015
Increases in the cost of electricity continue to contribute to a situation where home haemodialysis patients in Queensland face significant out-of-pocket costs. The purpose of this discussion paper is to illustrate the potential impact of increased power costs on the number of people choosing to undertake or continue using home haemodialysis in Queensland.

You can read the submission here.

The impact of increased power costs on home haemodialysis in the Northern Territory.

February 2015
The Northern Territory has the highest rate of dialysis patients in Australia. This includes a significant number of renal patients of Aboriginal and Torres Strait Islander origin, with a rate of 743 per million population.

The treatment option most utilised is haemodialysis, through stand-alone renal units in Darwin, Katherine, Tennant Creek and Alice Springs or satellite centres in remote communities offering nurse-led or self-dialysis models of care that are closer to home. The purpose of this discussion paper is to illustrate the potential impact of increased power costs on the number of people choosing to undertake or continue using home haemodialysis in the Northern Territory.

You can read the paper here.

Kidney Health Australia Pre-Budget Submission: 2015-16 Federal Budget.

February 2015
Charting a comprehensive approach to tackling kidney disease, this submission presents proposals to guide increased risk assessment, support early detection and improve the treatment of kidney disease.

We have included proposals to address all aspects of the health sector, from strategic planning and early detection, to education and support in the primary care sector, organ donation, palliative care and of course Indigenous health. All of the proposals are realistic and designed to be low-cost, no-cost or generate savings. They have one common aim: to improve the lives of people with kidney disease through smart, targeted interventions that seek to support existing efforts and policy.

You can read the submission here.

Submission on Indigenous kidney health issues for the Senate Select Committee on Health.

January 2015
The Senate Select Committee on Health was established in 2014 to inquire into health policy, administration and expenditure. Kidney Health Australia provided a submission on kidney health issues and also developed a specific submission on Indigenous kidney issues outlining:

  • Aboriginal and Torres Strait Islander people experience disproportionate levels of chronic kidney disease regardless of urban, region or rural locality.
  • There is scope for the Federal Government to provide solid leadership in Indigenous affairs and health, with the Department of Prime Minister and Cabinet at the centre of coordinated national policy and program implementation.
  • A competent, qualified, culturally respectful, multidisciplinary health workforce is critical to improving the health of Aboriginal and Torres Strait Islander peoples.
  • For Aboriginal and Torres Strait Islander people living with kidney disease, and their families, a wide range of support services need to be accessible and better integrated to limit the severity of dislocation for treatment.

Ultimately, adequately resourced preventive programs within the primary health sector reduces the progression of chronic diseases, including kidney disease, and will lead to longer-term savings in the later stage. 

You can read the submission here.

Calendar year 2014

The impact of increased power costs on home haemodialysis in South Australia.
December 2014
This discussion paper illustrates the potential impact of increased power costs on the number of people choosing to undertake or continue using home haemodialysis within South Australia.

You can read the submission here.

Position statement: The association between sugar sweetened soft drink and chronic kidney disease.
December 2014

Regular consumption of sugar-sweetened soft drinks is associated with the development of chronic kidney disease and kidney stone formation. We support the Consensus Statement published by Cancer Council Australia, Diabetes Australia and the National Heart Foundation of Australia, which recommends adults and children limit their consumption of sugar-sweetened beverages and instead drink water or reduced-fat milk.

You can read our full position statement here >

Kidney Health Australia Survey: Challenges in methods and availability of transport for dialysis patients.
October 2014
This survey describes the transport options provided by dialysis units for people who are unable to provide their own dialysis transport, and outlines the costs to consumers and dialysis units for these services.

The analysis is important for providing information to dialysis units and is critical to our advocacy work regarding service gaps and areas of best performance in dialysis patient transport.

You can read the survey report here.

Kidney Health Australia submission on  Terms of Reference – Senate Select Committee on Health.
September 2014
Chronic kidney disease is a major health problem, and one that is growing. Without greater focus from the Federal Government, there is clear evidence based on current trends that the situation has the potential to worsen.

We estimate that one in three Australians are at an increased risk of developing chronic kidney disease. Approximately 1.7 million Australians over the age of 18 (i.e., one in ten) have clinical evidence of chronic kidney disease. The situation is much worse for at-risk groups.

You can read the submission here.

The impact of increased power costs on home haemodialysis (re-released 2014).
September 2014
This discussion paper illustrates the potential impact of increased power costs on the number of people choosing to undertake or continue using home haemodialysis.

You can read the submission here.

NVDPA - Quality Practice Incentives Program - Development of a quality-focused PIP to address prevention of vascular and related diseases. 
September 2014
This paper presents a submission on an integrated approach to detect and prevent vascular and related diseases in Australian general (medical) practice. Its key feature is to move away from disease specific detection to an integrated approach which recognises the interaction between these diseases and their risk factors.

You can read this submission here

Kidney Health Australia: Response to ‘Factors Contributing to the Decline in Living Organ Donations’ report.

August 2014
This is our response to a report by Australian Healthcare Associates (AHA) titled ‘Factors Contributing to the Decline in Living Organ Donations’. AHA was engaged to undertake the investigation in 2013 by the Department of Health and Ageing.

You can read our response here.

Submission into interim report: A new system for better employment and social outcomes.
August 2014
We welcomed the opportunity to provide input into the interim report ‘A New System for Better Employment and Social Outcomes’ released by the Federal Government on 29 June 2014.

We would also appreciate an invitation to expand upon this in person, as we feel strongly there is now an opportunity to address the inequitable approach to supporting those providing episodic, but critical, care for people on dialysis and that resolving this issue can improve social and productive outcomes.

You can read the submission here.

Kidney Health Australia and Palliative Care Australia are calling for improved access to palliative care services for patients living with chronic or end stage kidney disease.
August 2014
People with end stage kidney disease are the second most frequent users of palliative care services in Australian hospitals. Studies show that approximately 1500 dialysis dependent people die in Australia each year. This submission illustrates the need for people living with kidney disease to have improved access to palliative care services.

You can read the submission here.

Kidney Health Australia submission to Senate Inquiry on out-of-pocket medical costs in Australian healthcare.

June 2014
This submission to the Federal Government’s Senate Inquiry on out-of-pocket medical costs details the expenses faced by people living with kidney disease, such as transport costs to and from dialysis; home dialysis costs; and costs associated with being a live donor.

You can read the submission here.

Kidney Health Australia's State of the Nation – Chronic Kidney Disease in Australia May 2014.

May 2014
Chronic kidney disease is common: around 1.7 million Australians over the age of 18 (i.e., one in ten) have clinical evidence of chronic kidney disease. However, as the condition typically has no symptoms, less than 10 per cent of people with chronic kidney disease are aware they have it. This means another 1.5 million people do not realise they have indicators of chronic kidney disease.

The most visible outcome of chronic kidney disease is end stage kidney disease. People with end stage kidney disease require renal replacement therapy (dialysis or a kidney transplant) to stay alive. 
Currently, more than 20,000 people in Australia are on renal replacement therapy. However, people with chronic kidney disease are up to 20 times more likely to die from a heart attack or stroke than they are to receive dialysis. The three most common causes of kidney disease requiring kidney replacement therapy are diabetes, glomerulonephritis (inflammation of the kidney) and hypertension (high blood pressure).

You can read the report here.

Inquiry into the Patient Assisted Travel Scheme (PATS) in Western Australia.
May 2014
This paper was submitted to the 'Inquiry into the Patient Assisted Travel Scheme (PATS)' undertaken by the Western Australian Parliament's Standing Committee on Public Administration. In it we argue for improved patient transport, accommodation and support in Western Australia.

You can read the submission here.

National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care in Acute Hospitals.
March 2014
We were invited by the Australian Commission on Safety and Quality in Health Care to respond to a series of key questions about the National Consensus Statement and its implementation.

Surveys have shown that one in ten deaths is related to chronic kidney disease. Our responses recognise the importance of safe and high-quality hospital care for people at the end of life.

You can read our responses here.

Kidney Health Australia Pre-budget Submission: 2014-15 Federal Budget.
January 2014
Our budget submission includes a number of proposals to address all aspects of the health sector, including strategic planning, early detection, education and support in the primary care sector, and organ donation. All of the proposals are realistic and designed to be low-cost, no-cost or generate savings. They have one common aim: to improve the lives of people with kidney disease through smart, targeted interventions that seek to support existing efforts and policy.

You can read the submission here.

Calendar year 2013

Kidney Health Australia submission to the Federal Government’s review of Medicare Locals.
December 2013
Our submission to the Federal Government’s Review of Medicare Locals includes evidence of the importance of awareness and education about kidney disease at the primary care level.

You can read the submission here.

Kidney Health Australia submission to the Queensland Government’s review of patient travel.

December 2013
This submission sets out our suggestions for improving the Queensland patient travel reimbursement scheme.

You can read the submission here.

Kidney Health Australia submission to National Commission of Audit. 
November 2013

This submission outlines Kidney Health Australia’s response to the National Commission of Audit’s Terms of Reference.

You can read this submission here.

Consultation response to NSW Government regarding Organ Donation.
November 2013
This submission outlines Kidney Health Australia’s initial comments regarding the Deceased Organ and Tissue Donation – Consent and Other Procedural Requirements; the Practice Guidelines for when doctors accede to a family’s objection to donation; and Designated Officers – Procedures and Guidelines.

You can read this response here.

Kidney Health Australia's Position Statement on organ trafficking. 
October 2013
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.

For more information on Australia’s organ donation efforts, or on the illegal practices of transplant commercialism organ trafficking and transplant tourism please see:

  • Australian Government website for the Organ and Tissue Authority donatelife.gov.au
  • 'The Declaration of Istanbul on Organ Trafficking and Transplant Tourism’, developed under leadership of Transplantation Society and International Society of Nephrology 2008. The full text of this important document can be found here declarationofistanbul.org
  • World Health Organisation Guiding Principles on Human Cell, Tissue and Organ Transplantation Crimes Legislation Amendment (Slavery, Slavery-like Conditions and People Trafficking) Act 2013.
    Read the full Act here.

Tackling Kidney Disease: A national action plan to reduce Australia’s kidney disease burden.
August 2013
Our key election policy document presents six key areas for an incoming government to address. Each provides a range of initiatives that are realistic, tangible and will improve the lives of people living with kidney disease.

There are 1.7 million Australians over the age of 18 (i.e. one in ten) with clinical evidence of chronic kidney disease. Yet less than one per cent are aware of their condition, confirming kidney disease remains the nation’s ‘silent killer’. Up to 90 per cent of kidney function can be lost before any symptoms become evident. There are nearly 11,000 people on dialysis and we expect that number to increase by 80 per cent by 2020.

The treatment of end stage kidney disease is estimated to cost in excess of $1 billion a year in direct health expenses, with the economic cost of forgone productivity even higher. End stage kidney disease is also ranked as the 10th leading cause of death in Australia, with more people dying from it each year than from breast cancer, prostate cancer or even road deaths. It is clearly time to act.

You can read the action plan here

Kidney Health Australia submissions to the South Australian Government’s review of patient travel.
July 2013
These submissions present our suggestions for improving the South Australian patient travel reimbursement scheme.

Kidney Health Australia submission to the Northern Territory review of patient travel.
June 2013
This submission presents our suggestions on improving the Northern Territory patient travel reimbursement scheme.

You can read the submission here.

Position Statement: National Rural Health Alliance - Kidney disease in Rural Australia.
March 2013

It is estimated that one in three Australian adults is at increased risk of developing chronic kidney disease, and one in nine Australian adults has some sign of kidney disease. People living in remote and very remote areas of Australia have much higher rates of end-stage kidney disease than their metropolitan counterparts, particularly in younger age groups.

CKD is typically asymptomatic, such that it is possible to lose up to 90 per cent of kidney function before symptoms appear. It is estimated that one in three Australian adults is at increased risk of developing CKD, and one in nine Australian adults has some sign of kidney disease. At the end of 2011 a total of 10,998 Australians were receiving dialysis, and according to the Australian Institute of Health and Welfare this figure is expected to increase 80 per cent by 2020.

Read this fact sheet, prepared in collaboration with Kidney Health Australia here.

To find out more about the National Rural Health Alliance Inc. click here.

Pre Budget Submission 2013-2014 Federal Budget – Charting a comprehensive approach to tackling kidney disease.
January 2013
Our budget submission includes proposals to guide increased risk assessment, support early detection and improve the treatment of kidney disease. We propose a number of key ‘next steps’ to tackle kidney disease by presenting a package of evidence‐based and cost‐effective interventions spanning strategic planning, improved early detection, education, the funding of ongoing treatment and organ donation.

You can read the submission here.

Calendar year 2012

Submission on The National Aboriginal and Torres Strait Islander Health Plan.
December 2012
This submission presents our initial round of comments and suggested areas of focus for the development of a new ‘National Aboriginal and Torres Strait Islander Health Plan’. The submission further supports our involvement in the national consultation workshop process held in 2012.

You can read the submission here.

Consultation response to NSW Government regarding organ donation.
November 2012
This submission presents our initial comments regarding the following topics: Deceased Organ and Tissue Donation – Consent and Other Procedural Requirements; Practice Guidelines for when doctors accede to a family’s objection to donation; and Designated Officers – Procedures and Guidelines.

You can read the submission here.

Submission on ACT Government’s Strategy for Improving Care and Support for those Living with Chronic Conditions.
November 2012
This submission presents our views and recommendations on the ACT Health Directorate’s ‘Strategy for Improving Care and Support for those Living with Chronic Conditions 2012–2017’. The submission outlines the state of kidney disease in Australia, provides specific feedback on the previous ‘2008–2011 - ACT Chronic Disease Strategy’ and comments on the six key goals and priorities outlined in the plan.

You can read the submission here.

Submission to the Pharmaceutical Benefits Advisory Committee – The need for second line treatments for kidney cancer.
October 2012
In light of our work as the national peak body for people living with kidney disease, this submission supports the view that Australians with kidney cancer should have equitable, timely access to the necessary range of subsidised treatment options available internationally, which includes both first and second line treatments for kidney cancer.

You can read the submission here.

Submission to the Independent Hospital Pricing Authority (IHPA) Consultation Paper for the Pricing Framework for Australian Public Hospital Services 2013–14.
October 2012
This submission outlines a number of points regarding the delivery of dialysis services and the current varying rates of uptake of the different modalities and settings in which it is undertaken, particularly regarding home dialysis. We put forward the view that there should be a more holistic accounting of home dialysis, including the costs faced by people in undertaking dialysis at home, when looking to determine the ‘efficient price’ for the delivery of these services.

You can read the submission here

Calendar year 2011

 

Position Statement: Water fluoridation.
Kidney Health Australia - Position Statement on Water Fluoridation September 2011

Read the Kidney Health Australia Position Statement here.

National Kidney Foundation (USA) - review April 2018
The National Kidney Foundation USA has not issued specific recommendations regarding fluoride intake and kidney disease due to the limited available research on the topic. The benefits of water, and dental products containing fluoride, is the prevention of tooth decay and dental cavities in people of all ages. The potential health risks are a rare bone disease called skeletal fluorosis, bone fractures and severe enamel fluorosis.

Read their statements on this topic here.

Position Statement: Drink water instead.
2008  - KHA review of its Position Statement, first published in 2003

There is a lack of evidence that drinking water in excess of thirst is beneficial for the health of Australians living in temperate regions and not exercising strenuously. To satisfy thirst, water is the recommended fluid. Drinks containing sugar or caffeine or alcohol may cause or worsen health-related problems and should be avoided except in modest quantities.

You can read the Kidney Health Australia Position Statement here.

You can read our Drink Water Instead fact sheet here.

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