Out-of-pocket costs in Australian healthcare

Submission 49

Victoria www.kidney.org.au
125 Cecil Street [email protected]
South Melbourne VIC 3205 Telephone 03 9674 4300
GPO Box 9993 Facsimile 03 9686 7289
Melbourne VIC 3001

Patron-in-Chief Patrons
His Excellency General Sir Jack Brabham, AO, OBE
The Honourable Sir Peter Cosgrove AK MC Lady Margaret Brabham
(Retd)

Senate Standing Committee on Community Affairs: Out-of-pocket costs in

Australian healthcare

Introduction

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 CKD1. Approximately 1.7 million Australians – a striking 1 in 10 – over
the age of 18 years have at least one clinical sign of CKD. And the situation is much worse for at ‘risk
groups’.

Yet to date, CKD has received little attention, particularly when compared to other chronic diseases.
The treatment of those with CKD continues to cost governments in Australia approximately $1
billion2, per year, and an economic study by Kidney Health Australia estimates that the cumulative
cost of treating all current and new cases of end stage kidney disease (ESKD) from 2009 to 2020 is
between approximately $11.3 billion and $12.3 billion. It is clear that kidney disease is a measurable
cost to the health system, not to mention a considerable cost in forgone productivity. The Australian
Institute of Health and Welfare estimates that the number of people on dialysis is expected to
increase by 80 percent by 2020 – rising from 11 to 19 per 100,000 of the Australian population3. The
burden of CKD is distributed unequally and unfairly, as evidenced by the high rates of the condition
in the lower socio-economic groups and in the Aboriginal and Torres Strait Islander community4.

Kidney Health Australia therefore presents this submission on a range of issues to Senate Standing
Committee on Community Affairs inquiry into ‘Out of Pocket Costs in Australian Healthcare’, as they
relate to those at risk of developing, or living with kidney disease. As the peak national body
representing the needs of those with kidney disease in Australia, Kidney Health Australia is well
placed to identify the current policy impediments to improved health outcomes, and offer evidence
based, sensible and cost effective solutions for consideration by government. First among those is
the need to stem the future tide of kidney disease through early detection, supported by primary
health care organisations5. It is also the most logical location for such an intervention – 83 percent of
Australians visit their GPs at least once a year6.

1
Chadban SJ, Briganti EM, Kerr PG et al. Prevalence of kidney damage in Australian adults: The AusDiab kidney
study. J Am Soc Nephrol 2003 July;14(7 Suppl 2):S131-S138.
2
Cass A et al. The Economic Impact of End Stage Kidney Disease in Australia: projects to 2020. Published 2010.
Available at: http://www.kidney.org.au/LinkClick.aspx?fileticket=vave4WFH73U%3d&tabid=635&mid=1837
3
AIHW 2011. Projections of the incidence of treated end-stage kidney disease in Australia, 2010-2020. Cat. No.
PHE 150. Canberra.
4
Kidney Health Australia, Chronic Kidney Disease Summit: The Need for Action in Australia, 2007. Available at
http://www.kidney.org.au/HealthProfessionals/PublicationsforHealthProfessionals/tabid/635/Default.aspx
5
To see Kidney Health Australia’s further views on this, please refer to our ‘Submission into the Review of
Medicare Locals – December 2013’ at www.kidney.org.au
6
BEACH Report, 2011-12, p.7
 Out-of-pocket costs in Australian healthcare
Submission 49

Kidney Health Australia advocates on matters relating to the welfare of kidney stakeholders and the
delivery of services to people affected by CKD in all its stages. Furthermore, Kidney Health Australia
has close ties with consumers, the medical community, renal units around the nation and is a
member of the Australian Chronic Disease Prevention Alliance (ACDPA) and the National Vascular
Disease Prevention Alliance (NVDPA). Kidney Health Australia is committed to achieving its mission
through engaging with renal sector professionals and consumer stakeholders in all initiatives and
linking with other key chronic illness programs in an integrated way. Kidney Health Australia’s work
is carried out in consultation with the nephrological community and with significant input from our
national network of consumers.

In its 46-year history, Kidney Health Australia has built a substantial evidence base to support its
activities, and strong support from the community to continue to initiate efforts to reduce the
incidence and impact of CKD. This submission represents areas where we believe current out of
pocket costs are negatively impacting improved treatment of those with kidney disease, as well as
the more efficient use of our limited health dollars.

The Cost to the Health System

Approximately 1.7 million Australians - a striking 1 in 10 - over the age of 18 years have at least one
clinical sign of existing CKD, such as reduced kidney function and the presence of proteinuria
(protein in the urine) or haematuria (blood in the urine)7. Perhaps even more startling is that an
estimated 1.5 million Australians are unaware they have indicators of CKD8.

In addition, 1 in 3 Australians is at an increased risk of developing CKD9. Australians are at increased

risk of CKD if they:

 Are 60 years or older

 Are of Aboriginal or Torres Strait Islander origin
 Have diabetes
 Have a family history of kidney failure
 Have established heart problems
 Have high blood pressure
 Are obese
 Are a smoker

As outlined above, CKD continues to cost governments in Australia approximately $1 billion10, per
year, and the cumulative cost of treating all current and new cases of end stage kidney disease
(ESKD) from 2009 to 2020 is estimated to be between approximately $11.3 billion and $12.3 billion.
In addition, a study from the UK confirmed the sizable funding required to support treatment for
kidney disease highlighting that the National Health Service (NHS) in England’s annual spend on
kidney care was estimated at £445 million in 2002 (£566 million in 2009-10 prices, or $852 million
Australian dollars). Furthermore the study indicated that program budget analysis by the

7
Australian Bureau of Statistics. Australian Health Survey: Biomedical Results for Chronic Diseases, 2011-12.
ABS, Canberra; 2013.
8
Australian Bureau of Statistics. Australian Health Survey: First results 2011-12. 2012. Report No.
4364.0.55.001.
9
Chadban SJ, Briganti EM, Kerr PG et al. Prevalence of kidney damage in Australian adults: The AusDiab kidney
study. J Am Soc Nephrol 2003 July;14(7 Suppl 2):S131-S138.
10
Cass A et al. The Economic Impact of End Stage Kidney Disease in Australia: projects to 2020. Published
2010. Available at:
http://www.kidney.org.au/LinkClick.aspx?fileticket=vave4WFH73U%3d&tabid=635&mid=1837

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Department of Health in England estimated that ‘the total NHS expenditure on kidney care, including
CKD, at £1.64 billion in 2009-10’ ($2.4 billion Australian dollars)11.

The nature of kidney disease with its complex co-morbidities dictates that it needs health initiatives
to be ingrained across the full spectrum of the health policy making sphere, and done so in
consideration with other chronic diseases, such as diabetes and vascular disease. Indeed, diabetes is
the top cause of end stage kidney disease in Australia at 36%, while hypertension causes an
additional 12% of cases.

The most recent data from the Australian Bureau of Statistics (ABS)12 shows that kidney failure is a
significant cause of death. Around 56 people die every day with kidney related disease. And in 2012,
diseases of the kidney and urinary tract were the 9th leading cause of death in Australia, with 3,711
deaths. The number of deaths from kidney-related disease has increased 17% since 2002. While
there has been significant progress over the past 15 years, kidney-related disease still kills more
people a year than breast cancer, prostate cancer or even road traffic accidents13.

Sadly there has been a 45% increase in deaths chronic disease since 2000. More people die
from diseases of the kidney and urinary tract each year than breast cancer, prostate cancer
and even road deaths.

The most recent data that is available from the Australia and New Zealand Dialysis Transplant
(ANZDATA) Registry14 shows that 2,543 people started kidney replacement therapy (dialysis or
transplant) in 2012. The number of people on dialysis has increased by 4.1% from 2011 to 2012,
resulting in 11,446 people receiving dialysis treatment at the end of 2012.

With dialysis costing up to $79,072 for hospital haemodialysis, $65,315 for satellite, home
haemodialysis $49,137 and peritoneal dialysis $53,112 (2009 prices), it is clearly an expensive
treatment. Current breakdowns indicate that 22% of Australians receive dialysis at a hospital, 29%
were dialysing at home and 49% in satellite centres. However, despite the cost effectiveness to
government and potential health benefits of home dialysis for the patient, there are significant
state-by-state variations, ranging from 37% in NSW to as little as 13% in the Northern Territory.
Furthermore, in Australia there is an overall lack of dialysis capacity – with Australia ranking 10th of
42 countries listed in the incidence of new end-stage-renal-disease patients in 201115, with the rate
of new patients coming onto dialysis programs significantly lower than many of our international
counterparts.

Even when averaging out the different modalities and their respective usage, Kidney Health Australia
estimates that the average cost of supplying dialysis is still a considerable $65,000 per person (based
on 2009 prices), per year. And of course, this does not take into account the lost productivity
dividend resulting from these patients either being forced to reduce their work hours, or leave
employment altogether.

11
Kerr M, Bray B, Medcalf J, O’Donoghue DJ and Matthews B. Estimating the financial cost of chronic kidney
disease to the NHS in England. Nephrol Dialysis Transplantation
12
Australian Bureau of Statistics. Causes of death, 2011. 2013.
13
Causes of Death, Australia 2010, published 2011
(http://www.abs.gov.au/ausstats/[email protected]/Lookup/3303.0.55.001main+features42010)
14
ANZDATA. Australia and New Zealand Dialysis and Transplant Registry 2012 Interim Summary. 2013.
www.anzdata.org.au
15
U.S. Renal Data System. Annual Data Report: Atlas of Chronic Kidney Disease in the United States. 2013.

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Submission 49

Out-of-Pocket Costs for those living with kidney disease

For those living with kidney disease, there are a number of out-of-pocket costs incurred. These costs
create a burden on those already suffering physically, mentally and financially. Recognising the
scope of the Terms of Reference outlined above, Kidney Health Australia would like to raise the
following areas where these costs are most acute:

 Transport costs to, and from, dialysis

 Home dialysis costs
 Costs associated with being a live donor

Each of these is expanded upon below.

Transport costs associated with dialysis

End stage kidney disease requires dialysis or transplantation as a long-term treatment to stay alive.
Transplantation is limited by the age and health of the person and the availability of kidneys for
transplantation. Dialysis is available as a self-managed home therapy or in a centre (hospital or
satellite) where health professionals perform the dialysis. The majority of these patients require
three haemodialysis treatments per week. This requirement for transport to in-centre based dialysis
is a major hurdle for many Australians. It is exacerbated in the elderly, those with poor social
networks and those who live great distances from dialysis units, such as rural and regional
Australians.

“Dialysis for in-centre patients is characterized by a never ending cycle of travel – at minimum,
three times a week, every week, to stay alive”

In 2007 Kidney Health Australia (KHA) undertook a consumer survey that determined the distances
being travelled, the associated costs and the preferred modality of transport.16 In 2010, KHA
undertook the Consumer Perspectives on Dialysis survey which included questions regarding
transport.17 Both surveys confirmed an ongoing issue with transport availability and the financial
commitment required to attend dialysis. Both of these can be provided to the committee upon
request.

Going to dialysis treatment therefore requires a high degree of commitment, and for many people
this may mean utilising different modes of transport throughout the week, with a strong reliance for
many on the State and Territory run Patient Assistance Transport Schemes (PATS). Indeed our survey
has shown that overall it is private transport by car that accounts for 74.4% of transport to life saving
dialysis – 39.5% being driven by another person and 34.9% driving themselves. For dialysis patients
however, unlike patients who may travel less regularly for treatments of other illnesses, dialysis for
in-centre patients is characterized by a never ending cycle of travel – at minimum, three times a
week, every week, to stay alive.

“It is private transport by car that accounts for 74.4% of transport to life saving dialysis –
39.5% being driven by another person and 34.9% driving themselves”

The fact that such regular treatments often means reduced working hours, or unemployment, and
on top of the added associated medical costs, it soon becomes very clear that the level of financial
reimbursement available to patients for travel becomes very significant to their ongoing financial
viability. It should come as no surprise that our survey highlighted that for the nearly 75% of

16
Kidney Health Australia 2007 Dialysis Consumer Transport Survey
17
Kidney Health Australia 2010 Consumer Perspectives on Dialysis, p38

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Submission 49

consumers who drive or who are driven, incur costs for travel that comprise approximately 15% of
their pension. Furthermore, those who pay the most for travel – over $50 per week – are
disproportionately represented in regional areas18.

As PATS is administered by State and Territory Governments, each state has a differing scheme,
payment rates and eligibility requirements. Currently, Queensland and Tasmania offer the lowest
overall thresholds for the distance to be travelled, before patients are considered eligible to be able
to access the payments – with 50 kilometres the minimum one way threshold. This one way
threshold ranges up to 200km per week in the Northern Territory.

Queensland also offers the current highest rate of payment, providing from 1 January 2013 a
doubling of the vehicle mileage subsidy from 15 cents per kilometre to 30 per kilometre. However,
South Australia and Western Australia offer 16 cents per kilometre, and the remaining States and
Territories at differing levels between these two thresholds19.

It should be noted that the NRMA estimate that the actual cost of running a small car is at minimum
56 cents per kilometre, and large car can be in excess of 97 cents per kilometre20. For taxation
purposes, the Australian Tax Office currently offers claiming rates of 63 cents for a small car and 75
cents for a large car21. Both of these figures far exceed the rates of even the most generous State
and Territory schemes, highlighting that these schemes are at best, a contribution to assisting in the
covering of costs, rather than representing a true measure of reimbursement.

For patients on dialysis, as outlined above, travel for in-centre dialysis is at minimum three times a
week, resulting in patients travelling a great deal, often much more than many other patients
receiving less regular treatments for other chronic conditions.

However, for some States and Territories, unless each trip exceeds the one way threshold, patients
cannot obtain financial assistance. As a result of this, dialysis patients who may travel short of a 100
kilometres one way threshold, but who still travel well in excess of 100 kilometres per week for
dialysis treatment are rendered ineligible under the scheme.

For example, a patient who travels 80 kilometres each way for dialysis treatment would therefore
travel 160 kilometres per dialysis session, which when dialysing three times a week, would result in
480 kilometres travelled for essential medical treatment. However, they would not, under current
guidelines for schemes such as that in South Australia, be able to claim for travel assistance, where
as someone travelling much less for other forms of medical treatment would be able to do so.

Some States and Territories have recognised the unique circumstances and regular travel of dialysis
and introduced weekly threshold figures, alongside one way distance thresholds. However, again
they range from 200km a week, through to 500kms per week (after 5 weeks) depending upon the
state – again creating wide variation and inequity for patients nationally.

As demonstrated above Kidney Health Australia’s concerns are that the current schemes simply do
not adequately reimburse dialysis patients for the true cost of their travel. Furthermore there is no
national consistency in the level of the payments, the distance thresholds and in particular, the
introduction of cumulative weekly distance thresholds to address the particular circumstances of
dialysis patients.

18
Dialysis Transport Survey, National Results and Recommendations, Kidney Health Australia, 2007.
19
ACT has different arrangements (noting its relative size) and has fixed rates for travelling to other cities.
20
http://www.mynrma.com.au/motoring/buy-sell/buying-advice/car-operating-costs/about-car-operating-
costs.htm
21
http://www.ato.gov.au/individuals/content.aspx?doc=/content/33874.htm

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Finally, the same applies to the payments made under PATS for accommodation, where overnight or
continued travel away from home is needed. These payment rates range from $35 per night up to
$60 (or $75 for a couple) to cover commercial accommodation22. Again both the levels of payment,
and the significant state by state variation cause issues for patients and their carers. Furthermore,
there remain a myriad of different eligibility requirements and differing rules, application and claim
procedures.

Recommendation: Work with the State and Territory Governments to increase the payment rates,
lower thresholds and work towards greater national consistency between the schemes, thereby
removing the significant inequity between the current schemes.

Home Dialysis Costs

For those with kidney disease, dialysis is a necessary, albeit high cost, treatment. Without dialysis or
transplantation, death will occur. As outlined above, an economic study commissioned23 by Kidney
Health Australia in 2010 highlighted that on average dialysis costs $79,072 for hospital haemodialysis
(2009 prices), $65,315 for satellite, home haemodialysis $49,137 and peritoneal dialysis $53,112; it is
clearly an expensive treatment.

Current breakdowns indicate that 71% of Australian’s receive dialysis at a hospital or satellite
centres, and 29% are dialysing at home. However, despite the cost effectiveness to government and
potential health benefits of home dialysis for the patient, there are significant state‐by‐state
variations, ranging from 37% in NSW to as little as 13% in the Northern Territory and 22% in South
Australia, Tasmania and the Australian Capital Territory.

Therefore, the use of home dialysis, where appropriate, results in a considerable saving to
governments – up to $30,000 per patient, when compared to hospital based dialysis. In addition to
reduced costs, dialysis in the home results in less travel for the patient, which is a considerable
benefit for those living in regional, rural and remote localities, or for patients lacking access to public
or alternative transport.

“The use of home dialysis, where appropriate, results in a considerable saving to governments
– up to $30,000 per patient, when compared to hospital based dialysis.”

Some patients undertaking home dialysis are able to return to the workforce, where previously this
was not possible as the ability to undertake dialysis outside work hours was not possible. It also
creates a cost saving as patients will not need to seek travel reimbursements, or accommodation
assistance, if a switch to dialysing at home is made, resulting in potentially further savings for
governments.

Clearly, increasing home dialysis in the patients for whom it is reasonable and appropriate will
potentially not only improve their quality of life and productivity, but also the cost to State, Territory
and Commonwealth governments. Indeed, the aforementioned economic study notes the expected
costs to the health system in the future; Kidney Health Australia estimates that $378 to $430 million
could be saved over the next 10 years if the increased use of home dialysis was achieved24. This is
crucial not just to the State and Territory Governments who run dialysis services, but to the

22
http://www.wacountry.health.wa.gov.au/fileadmin/sections/pats/WACHS_G_PATS_GuideForPatientsAndCarers.pdf
23
Cass A et al. The Economic Impact of End Stage Kidney Disease in Australia: projects to 2020. Published
2010. Available at:
http://www.kidney.org.au/LinkClick.aspx?fileticket=vave4WFH73U%3d&tabid=635&mid=1837
24
Sted

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 Out-of-pocket costs in Australian healthcare
Submission 49

Commonwealth who under the mature model of Activity Based Funding (ABF), will be funding 50%
of these hospital costs going forward.

Yet despite this, the capital set-up costs for home dialysis machines and the associated water and
electrical costs are only partially reimbursed or discounted, in varying degrees, through differing
means across States and Territories. The present structure of accountabilities between the
Commonwealth and the States and Territories within the Health portfolio, and the differing
delineation of responsibilities in service delivery, has resulted in inequitable and inadequate
responses across jurisdictions.

Across the country at the moment there are a number of rebates available for low income earners,
those using life supporting equipment, and for electricity and water use. Again these all vary from
state to state, and in most cases fall well below the actual cost of undertaking dialysis at home.
In the case of the low income household rebate, it is for concession card holders – it is not
specifically designed for dialysis patients, nor does it cover the full cost. The current water
concessions vary across the state – and take the form of anywhere between 80 and 400 kilolitres,
without charge. This creates inequity, as the level of concession is dependent upon location. It is also
delivered through directly dealing with the water supply companies, rather than through a central
state government contact.

Another example is that the life support rebate provided by the NSW Government subsidises the
cost of increased electricity requirements through the provision of a credit, which is then deducted
from personal electricity bills by retailers. Again, there is a requirement for the patient to engage
with another entity, in this case the utility provider, and this would also presumably create a
significant transaction cost. Analysis has shown that the amount, $251.85 per year is clearly
insufficient. A more detailed breakdown of the rebates for each State and Territory can be provided
to the committee, along with an analysis of the true cost of running home based dialysis.

Utility costs for those on home dialysis – water and electricity, set-up and waste disposal – can act as
a significant barrier to increased uptake, despite the health and economic benefits of home dialysis.
As these costs rise, they could also act as a major consideration for patients to return to hospital or
satellite dialysis in an effort to defray these expenses. This is because these costs – set-up,
electricity, water and waste removal are covered in full, by the service provider for those who
undertake satellite and in-centre dialysis.

Therefore for those whom home dialysis might reduce the burden of travel, may result in better
health outcomes, may allow them to return to work, and may save governments up to $30,000 per
year, we don’t support nearly well enough. A small payment – less than 10% of what government
could potentially save, would greatly assist home dialysis patients and remove this significant
financial barrier and burden.

“for those whom home dialysis might reduce the burden of travel, may result in better health
outcomes, may allow them to return to work, and may save governments up to $30,000 per
year, we don’t support nearly well enough”

Furthermore, the current process is not an administratively efficient manner of providing financial
support. One single, direct payment from the government would thereby remove some significant
transaction costs. To that end, Kidney Health Australia would recommend adopting a model of one
single, annual payment as is currently provided in Victoria.

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The Victorian model offers:

 A $1,990 per patient per annum payment for home haemodialysis (CPI indexed).
 A $755 per patient per annum payment for home peritoneal dialysis (CPI indexed).
 A 17.5% discount on annual energy bills for concession card holders.
 Concession card holders may also be eligible to receive a rebate of up to $277 per year.
 Life Support machine concession – the discount is equal to the cost of 1,880kw per year.
 Water ‐ special dispensation rebate on water bills equal to the cost of 168kl of water per
year.

In the short term, Kidney Health Australia strongly advocates that implementation of this Victorian
model be considered and Kidney Health Australia willingly offers to assist collaboratively in providing
further analysis to demonstrate the potential savings such an incentivising model would ultimately
deliver.

Recommendation: Recognising the Commonwealth’s role in funding hospital services, work with
States and Territory to introduce streamlined and adequate payments for those who chose to
undertake home dialysis.

However, long term the introduction of ABF provides an opportunity to work with State and
Territory governments to standardise the manner in which this financial support is provided, noting
a lack of support can act as a barrier to increased home dialysis uptake, and that they are currently
unnecessarily administratively complex for both the government and the patient. By ensuring that
home dialysis is funded appropriately, including through appropriate and effective levels of support
for the costs borne by the home dialysis patient, significant savings could be potentially gained
through increased home dialysis usage and reduced transaction and administration costs.

Kidney Health Australia therefore advocates that not only should all modalities of dialysis continue
to be included within ABF, but that like hospital and satellite dialysis, the cost of running the home
dialysis machines be included in the price weightings. This would ensure consistency between the
different modes of dialysis and their respective pricing under ABF, and provide an efficient means of
funding these costs for patients. Further to this, Kidney Health Australia would advocate that the
Commonwealth ensure that the revised funding arrangements take into account rural and
Indigenous loadings for location of those undertaking home dialysis.

Recommendation: The Commonwealth ensure that the costs of undertaking home dialysis be
included in the ABF mechanism, as well as rural and indigenous loadings, and that this be used to
provide a stream of funding to home dialysis patients to remove this financial burden and barrier.

Finally, despite the significant saving home dialysis provides governments, many dialysis Carers are
currently excluded from accessing carer support. The Commonwealth can address this roadblock by
better supporting the Carer who enables home dialysis through access to Carer’s income. Mobility
and independence is dramatically reduced while undergoing dialysis. Transport to and from medical
appointments, plus attendance at appointments, is often an added responsibility, as is the need to
often limit work and recreational activities, in favour of fulfilling their role as Carer.

Carers play a particularly pivotal role in supporting an increased home dialysis uptake, especially if
the patient is a young child, has limited mobility, dexterity or movement, or has failing memory. This
contribution varies from completely performing the dialysis, to being present during dialysis to assist
during clinical emergencies which can be potentially life-threatening. During dialysis the person
undergoing treatment is connected to the machine or dialysis equipment and therefore is
completely dependent on their Carer for all support related to provision of daily living. The average

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time spent for this role is around 20 hours a week, which compromises the ability of the carer to
work. Whilst the majority of Carers for dialysis patients believe their caring role is rewarding, caring
is not always easy and comes at a cost. Carers have poorer health and well-being than non-Carers,
and their responsibilities can adversely impact on family relationships, social networks, employment
opportunities and finances.

Yet despite this, Carers of those on home dialysis are usually not considered eligible for the Carers
payment, as there is not a specific category for provision of complex medical care on the current
carers form.

Recommendation: Amend the current forms and eligibility requirements to include Carers of those
who are undertaking dialysis.

Addressing out-of-pocket costs for live donors

The work program by the Australian Organ and Tissue Authority (DonateLife) over the last four years
has seen a substantial and sustained increase in the number of kidney transplants from deceased
organ donors. This remarkable result of a 43 percent increase in the last four years25 highlights the
improvements made as a result of the Commonwealth’s investment. This change has however not
been accompanied by an increase in the total number of kidney transplant operations, due to a 23
percent fall in the number of transplants from live kidney donors over a similar time26.

While live donor kidney transplantation has existed in Australia from the earliest days of
transplantation, it peaked in 2008 when it accounted for 44 percent of the total transplant activity.
Since then the number of live donors has steadily fallen, with the latest figures showing that
transplants from live donors account for 28 percent of total transplant activity. The availability of a
live donor allows ‘pre-emptive’ transplantation to occur without the requirement to start dialysis –
generating a significant saving in dialysis treatment costs (dialysis costs are outlined above). This pre-
emptive pathway is associated with the best clinical outcome and is the most cost-effective
approach in the renal replacement pathway.

In fact, live donor kidney transplantation is associated with an increase in patient survival of 27
percent at 20 years (over that observed with deceased donors), highlighting that it is a critical
component of the wider push for increased organ donation in Australia. Again this removes or
significantly delays an ongoing high cost treatment through dialysis – a potential saving in excess of
$80,000 in direct health care costs, per patient, per year, not to mention the productivity benefits as
the individual returns to employment.

One of the barriers to live kidney donation is the financial cost to the donor, with international
experience indicating that 45% of living donors experience some form of financial hardship27 and
one international study highlighting that 24% of potential living donors choose not to donate
because of anticipated financial hardship28. The continuing tightening of economic conditions will
likely have an impact on live donors seeking to self fund their operation and time away from work.
These financial strains have be eased, to some degree, by providing donors who work with the

25
2013 645 kidneys transplanted from deceased donors, 2009 452 kidneys transplanted from deceased
donors.
26
2013 249 kidneys transplanted from living donors, 2009 326 kidneys transplanted from living donors
27
Stothers L, Gourlay W and Liu W, 2005, Attitudes and predictive factors for live kidney donation: A
comparison of live kidney donors versus nondonors, Kidney International; 67: 1105‐1111.
28
Sickand M, Cuerden M, Klarenbach S, Ojo A, Parikh C, Boudville N and Garg A, 2009, Reimbursing Live Organ
Donors for Incurred Non‐Medical Expenses: A Global Perspective on Policies and Programs, American Journal of
Transplantation; 9: 2825‐2836.

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ability to access paid leave, for a specified period, via a reimbursement to the employer through the
announcement of the ‘Supporting Leave for Living Donors’ Scheme – something that Kidney Health
Australia has advocated for quite strongly.

It is important to note however that the scheme is only a two year pilot and that no funds have been
put aside for wider public awareness and campaigning. Noting that the scheme relies upon the
awareness and education of the donor, their employer and their doctor, Kidney Health Australia
believes a longer trial period, or ideally making the scheme ongoing, noting its modest cost and
significant social and economic benefit it brings.

Furthermore, we would argue that a small amount of funds be put aside to undertake education and
communication campaigns is necessary. In the absence of that funding yet being made available,
Kidney Health Australia has undertaken our own communications campaign, advertising the scheme
online, through our newsletters, through an online forum, and by writing to State and Territory
Public Service Commissioners, major industry groups and unions, to let them know this type of paid
leave now exists. However, if this scheme is going to be widely accesses, more needs to be done.

“There are a lot of families, like those living in the country, who spend 8 hours coming up to
the children’s hospital regularly, so when the time comes they don’t have any leave left”

~ Darren McDonald, a live kidney donor at the launch of the scheme, with his son Josh, a live
donor recipient.

Recommendation: That the Commonwealth Government extend the trial of the Supporting Leave
for Living Donors Scheme, and include modest funding to support awareness, education and
support.

Kidney Health Australia would also advocate for the Commonwealth Government to work to
develop, in bilateral discussion with the States and Territories, a standardised policy as to what costs
– such as transport and medical – are covered for the patient, as there is currently inequity occurring
not only between jurisdictions, but between different renal units.

Recommendation: Work the States and Territories, as part of the wider organ donation agenda, to
create a standardised policy on what costs for live organ donation are covered, to remove inequity
across the jurisdictions.

Conclusion
Quite clearly it can be seen that kidney disease has a significant impact on the health system in
terms of direct treatment costs; in lost employment; in travel and accommodation costs; and most
importantly, on people’s ability to lead productive, healthy lives. This is the case not only for those
living with kidney disease, but for those caring for people with kidney disease, noting that the caring
responsibilities for those on dialysis are significant.

The nature of kidney disease dictates that it needs health initiatives to be ingrained across the full
spectrum of the health policy making sphere, and done so in consideration with other chronic
diseases, such as diabetes and vascular disease.

Kidney Health Australia believes that this committee inquiry provides an opportunity to consider
options to target a number of key areas within the scope of the Terms of Reference regarding out of

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 Out-of-pocket costs in Australian healthcare
Submission 49

pocket health care costs – all designed to greatly improve the lives of those with kidney disease,
while also reducing the significant and increasing burden on our health system.

Kidney Health Australia would be happy to expand upon the views outlined in here in person, should
the Committee wish to discuss further. We thank you in advance for your consideration of the issues
raised above. If you have any questions, please feel free to contact Luke Toy, National Manager for
Government Relations, Policy and Media.

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