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Senate Select Committee on Health

DUFF, Ms Donisha, National Manager, Indigenous Affairs, Kidney Health Australia

MATHEW, Associate Professor Tim, Medical Director, Kidney Health Australia

TOY, Mr Luke, General Manager, Public Affairs, Kidney Health Australia

WILSON, Ms Anne, Chief Executive Officer and Managing Director, Kidney Health Australia


CHAIR: I now welcome representatives from Kidney Health Australia. Thank you very much for joining us this morning. I invite you to make an opening statement. Is there more than one?

Ms Wilson : No, there is just one.

CHAIR: Thank you very much.

Ms Wilson : I would like to thank the Senate select committee for this opportunity to discuss Kidney Health Australia's supplementary submission on Indigenous kidney health, and I acknowledge and pay my respects to the traditional owners of the land, both past and present. Kidney Health Australia is a national peak body representing the needs of those with or at risk of kidney disease in Australia. Our stakeholders include individuals affected by kidney disease and their families and carers, as well as clinicians and allied health professionals working in the space, among others.

Our vision is to save and improve the lives of Australians affected by kidney disease, and this is achieved through the delivery of programs in education, advocacy, research and support. We are one national organisation, having ceased to be a confederation in 2003. Approximately 100 staff across seven office locations around the country manage our national health and medical programs. A major principle of everything we do is based on the provision of access and equity with regard to service delivery to assist those affected by kidney disease. Kidney Health Australia is proudly independent of government.

Our health services and programs are underpinned by evidence, as are all our advocacy platforms. Our strength comes from our ability to draw on the experiences of our kidney community around Australia through our national consumer participation framework, consisting of consumer committees in each state and territory, with the chairs of each committee sitting on our national consumer council. Kidney Health Australia are a funder of the Caring for Australasians with Renal Impairment Guidelines, or CARI Guidelines; a member of all jurisdictional renal clinical health networks around the country; and a founding partner of the Home Dialysis Advisory Committee, and we work hand in glove with nephrologists, the Society of Nephrology, general practice and primary health care networks, among others.

Some of our national programs include: the only national GP and allied health education program in the country that is CME-accredited—it has been going for in excess of 10 years—our kidney health information service, which is a national telephone information service; our national kidney kids programs that provide very much needed services to children with kidney disease; our Big Red Kidney Bus holiday dialysis program; our transplant housing program; and, the Australian Kidney Research Foundation that disperses half a million dollars towards kidney research each year.

The health and wellbeing of our Aboriginal and Torres Strait Islander kidney consumers is a national priority for us, and we have resourced this area through the employment of our national Indigenous affairs manager, Ms Donisha Duff. The burden of Indigenous chronic kidney disease is complex and has a devastating impact on Aboriginal and Torres Strait Islander communities. Disproportionate levels of chronic kidney disease are experienced regardless of urban, regional or rural locality. This is an issue of national significance requiring national leadership and coordination.

Major priorities for Aboriginal and Torres Strait Islanders, as presented to Kidney Health Australia by our kidney stakeholders, relate to: improving access to dialysis modalities closer to home; the adverse impact of current models of service delivery and dialysis funding on best outcomes; the critical role of carers and the lack of support programs; transport and accommodation as enablers for dialysis; and the low kidney transplant rate, amongst others.

Kidney Health Australia, in conjunction with the society of nephrology and Close the Gap, is hosting a parliamentary breakfast on World Kidney Day to focus on Aboriginal and Torres Strait Islander kidney health. Members of the select committee have been invited and I do look forward to welcoming you on that day.

Our supplementary submission on Aboriginal and Torres Strait Islander kidney health is informed by our discussions and relationships with key Indigenous and non-Indigenous stakeholders on the ground. This includes services that deliver primary health care, services vested in research in remote and Indigenous kidney health areas, and services that work with clinical professionals on the ground. There is still much we do not know about Aboriginal and Torres Strait Islander kidney health when it comes to service delivery. One thing we do know is that there is no one size that fits all.

There are many innovative models of service delivery, programs and policies that are currently working to improve kidney health and kidney outcomes for Aboriginal and Torres Strait Islander people. Kidney Health Australia will continue to work with our key Indigenous and non-Indigenous stakeholders to attain better kidney health outcomes for Aboriginal and Torres Strait Islander people.

In our submission we have outlined our comments against the terms of reference, which I hope the committee has found useful. We are happy to answer your questions regarding the key issues of access to dialysis, issues regarding transport and accommodation, models of service delivery, low kidney transplant rates and early detection, amongst others. We thank you for this opportunity to make a difference to the health of our Aboriginal and Torres Strait Islander communities.

CHAIR: Thank you very much, Ms Wilson. Indeed, we do thank you for the care in your submission, and the way in which it very effectively lines up with the inquiry's particular focus. I know that these documents take a lot of time to prepare, so your contributions—and the contributions of all those who participate in this process of the parliament—are highly valuable. How many Indigenous people do you have on board, in terms of the representation that you have within your organisation?

Ms Wilson : On board in our organisation?


Ms Wilson : They participate largely in our consumer participation committees—largely coming and represented from the Northern Territory. We have three representatives from the Northern Territory and one in Queensland.

CHAIR: The burden of disease in the Indigenous community is extremely heavy, isn't it?

Ms Wilson : Absolutely.

CHAIR: You mentioned sources of evidence in Indigenous health care. We have had some evidence this morning that indicates how fragile the collection of data is. We have also had some indications this morning, and indeed in other hearings, that evidence-based decision making seems quite absent in many of the decisions that we have seen this government take. I have indicated that this morning, particularly with regard to price-signalling access to health care, but I think that again today we have seen there is a failure to consult with people on the ground. We have heard today about the hit on prevention and early intervention programs if key Aboriginal health services absorb any costs imposed on them by the federal government.

In terms of kidney health in particular, and in managing it as a chronic disease, on page 6 in your submission you highlight two very significant issues. Can I ask you to go to those two issues initially.

Ms Wilson : Sure.

Ms Duff : With the first issue, in terms of a price barrier and accessing dialysis treatment, we know from our consumer committees and from discussions with service providers that any sort of out-of-pocket cost expense is going to have a detrimental effect, particularly when you are talking around access to renal dialysis because this is the type of service that is required to keep you alive. As a general statement, we think that any out-of-pocket costs will have a negative effect on Aboriginal and Torres Strait Islander access to dialysis services.

Mr Toy : In regard to that, I think there are a number of out-of-pocket expenses that impact on dialysis. Part of the discussion around delivering dialysis services in a cost-effective way is actually looking at the broader economic and societal costs to the way in which we are delivering dialysis. Looking at the way we deliver it in rural and remote locations, primarily we have a situation where a lot of people come in from the country and they are doing it in Darwin, Alice, Perth or Adelaide. Obviously with dialysis costs—they are coming over, they are coming with family—there are accommodation costs. The schemes themselves do not adequately cover the costs for those individuals, so there is a cost on government and a cost on the individual. The stock itself is not sufficient and where stock is available it is not appropriate in many cases—

CHAIR: When you say 'stock'—

Mr Toy : Housing stock. I think we were told anecdotally from a nurse that some of the delays for adequate housing stock are four to seven years, so then you move to a situation in some of these locations where they are in hostel environments, which are temporary. In that situation, that accommodation is not really appropriate for someone managing chronic disease and dialysis. There is a range of costs that sit around dialysis for the way that we are delivering it at the moment by bringing people in to major centres. Those kinds of costs act as a barrier to continuing dialysis and then as a barrier to being able to return home, as people find they are moving to major cities and then essentially being stranded there. Those are the kinds of costs facing Indigenous Australians, particularly in rural or remote situations where they have come in for dialysis.

More broadly on the out-of-pocket costs for dialysis, for those in regional and urban centres home dialysis should be a really effective option. It should be a really attractive option for government—it is around $30,000 per year cheaper per person—but the people who do it at home face an out-of-pocket cost on for electricity and water for running the machines. That can add a barrier.

CHAIR: How much policy consultation have you done with the former Minister for Health or the current Minister for Health with regard to the advice that you are offering here today?

Mr Toy : With the former minister, with his staff, we have certainly presented these economic case studies in person through our budget submissions and through our regular submissions to government; likewise our submission to the out-of-pocket cost inquiry that was happening in the Senate.

CHAIR: Have you had any positive response to the submissions that you have made?

Mr Toy : Yes. I think there is a recognition that we can in many ways achieve two things that are usually butting heads with each other: we can achieve better health outcomes while also achieving a better economic outcome, and we can do it through realising direct healthcare costs. We are not talking about percentage of GDP costs here; we are talking, 'This is what it costs to deliver the service and this model is cheaper.' Part of the issue with all of the issues around dialysis is, of course, the federal-state divide. That is really where we run into a few issues and I am happy talk about that.

At a federal level, we pay for a substantive portion of hospital services. But the out-of-pocket costs and the various schemes that partially rebate some of those scenarios are managed by state governments. So I think the overriding message from our submission, and particularly the latter recommendations, is that in the space of dialysis—and noting the role kidney disease plays in Indigenous health—we need to make the response to this a national response and make it, in some ways, a national priority so that the federal government is working with state and territory governments because, in this situation, it is not one of those cases where we are waiting for a cure or a solution to be developed, it is not one of those cases where the costs far outweigh the benefits, and, in many cases, it is not a case where the money is not even there. In some examples around accommodation the money is actually sitting there waiting to be spent. It is going to be a case of resolve of governments at all levels working together to remove some of these barriers because, to us at least, the social and health benefits go hand in hand with the actual economic benefits that could sit there.

CHAIR: To this second point, I want to direct you to the issue regarding the PIP incentives.

Mr Toy : This is an approach put together as part of a broader alliance called the National Vascular Disease Prevention Alliance, which is ourselves, the Heart Foundation, the Stroke Foundation and Diabetes Australia. What we are seeking to do here is recognise the relationship those four diseases have with each other. If you have kidney disease, you are far more likely to have heart attack. If you have diabetes, you are far more likely to develop kidney disease. If you have all of those vascular conditions, you are much more likely to suffer a stroke.

CHAIR: This is the combination that we are finding more pre-eminent in Indigenous and Aboriginal and Torres Strait Islander communities than in the general population?

Mr Toy : Yes. So, essentially, what we are suggesting here, at least for the GP environment, is that, rather than pursue a policy of having individual or incomplete checks, we do one simple check that measures the absolute risk of someone developing this cohort of diseases. The suggestion we have made is that currently there is a practice incentive payment review occurring. That may also be an opportunity to take, as part of that rationalisation process, an approach to saying, 'Let's look at these four diseases through one simple check.'

Ms Wilson : With previous practice incentive payments that have been put in place, kidney disease was actually excluded from those kinds of health checks that were implemented. By implementing an integrated health check, we have those three comorbid conditions checked for in one health check.

CHAIR: So, there is a pretty significant efficiency gain, and, from attending an earlier event that you had here in parliament, I learnt that kidney disease can be extremely advanced before you even get any symptoms.

Ms Wilson : Yes. You can lose up to 90 per cent before experiencing any symptoms, and it is not uncommon for us to get calls from members of the public to say that they went to their doctor, they had been feeling unwell for quite a long time, and they did not know they had uncontrolled blood pressure. They have to go onto dialysis, and they had no idea. I am sure Tim Mathew can provide further evidence of that.

Prof. Mathew : I can maybe just underline the statement that kidney disease is asymptomatic until far advanced. Just this past week in my own practice I had a 25-year-old who came in with 15 per cent of his kidney function left. It had been found because he had gone to his local doctor with tiredness and had a blood test done. So it is distressing in many ways that it does not cause symptoms earlier. I would just like to say also that the discussion around the combination of comorbidities is one to which we give our full support. We do not advocate for isolated kidney disease detection or management programs. It is intrinsically interwoven with diabetes and heart disease and other conditions. So all our teaching and education for general practitioners and others takes recognition of this. The overlap is substantial.

CHAIR: Professor Mathew, can I just ask you a question in terms of some of the evidence we have been receiving about the need to have a general review—perhaps considering blended payments, or moving away from a fee-for-service to a more population-based and holistic chronic disease management model. As a GP, as you have just declared to us, what is your view of the capacity of the sector, particularly in the Indigenous settings—rural and remote, as well the culturally sensitive ones that we need for the city—and of the ways in which engagement with long-term chronic illness can be incentivised, with the GPs at the heart of the solutions and the care in our communities?

Prof. Mathew : Firstly, I am a specialist nephrologist not a general practitioner, so I cannot speak for that sector at all. Although we work—

CHAIR: All right. But you probably talk to them a bit.

Prof. Mathew : Absolutely. The model with care for chronic disease is, I think, working its way through. Certainly, at its worst, my patients would see a nephrologist, a cardiologist, a diabetologist, a general practitioner and, on top of that, all allied health. So, at worst, they have got multiple attendances at separate individual practitioners. There is a model being worked through at the Monash Medical Centre at the moment, in the diabetic world, which is trying to get multiple practitioners sitting in the one room with one patient. Intrinsically, that is rather inefficient but at least it is addressing the multiple attendances. The other model which is being worked through is that of grouped patients with one doctor; because the issues are common, and the sharing of problems and issues in that group setting has been proven in some situations to be effective. So I do not know where we are going to go. I suspect in Australia it is going to say stay pretty much in the individual practitioner model, except perhaps in these specialist clinics which are in some way pulling together a bigger scope of specialties. But that is early days.

CHAIR: If there was an incentive for doctors in a particular region to do early identification of kidney illness—would such a model be possible? And how would it play out, not only in terms of health outcomes but also as far as cost to the Australian health dollar?

Prof. Mathew : The essentials of the diabetic practice incentive payment are in place and have been for some years—where there is an extra payment to general practitioners who identify a certain number or percentage of their population completing those items within the practice incentive. It would be my impression that that program has not been a great success in uptake. The essentials are right, but the uptake has been poor. This has, I think, led to the review of the practice incentive payment arrangements, and we are hoping that the integrated health care will become part of that and will, in one hit, be an efficient way of at least making some progress on that.

CHAIR: I would like to ask a question with particular regard to recommendation 7 in your submission, which asks for leadership in the coordination between the Northern Territory, Western Australian and South Australian governments. Could you explain what is going on in that space, and why you have made that recommendation? It is very specific.

Mr Toy : Yes. I might talk for a little bit about that one and then pass it to Donisha. One of the key issues which I alluded to earlier is that where we draw the lines on the map for state governments does not necessarily align with how Indigenous communities are grouped. To give an example, we have had a situation where someone had one sister being treated for dialysis in Perth with the other one is being treated in Adelaide, because of those regions that you have in that tri-border area. Essentially, what the Central Australian Renal Study brought forward was a wealth of information around different models that would work: dialysis back on community; looking at ways in which nurse-led and Indigenous health workforce-supported dialysis back on community could work. But at the end of all of these dialysis machines is obviously a state government, who has to run and maintain the system. And the issues in that particular region are that we need a level of agreement between the Western Australian, South Australian, and Northern Territory governments as to who is happy to bear costs when residents who are officially from WA may need to do dialysis, or it may be more appropriate to do dialysis, in the Northern Territory or in South Australia. And so—

CHAIR: For a whole host of reasons, including where they might have accommodation, I expect.

Mr Toy : Absolutely. Or where they might have family that can support them in accommodation, or where transport is actually more appropriate and easier for them to access.

CHAIR: Have you been consulted by the Department of Prime Minister and Cabinet? They seem to be holding this very close, as we have heard: people waiting for decisions—520-odd days and they still have not got an idea if they are still going to exist in several weeks. How much have you been consulted, in the government's decision making, to this point?

Mr Toy : I guess, primarily because we are dealing with areas of dialysis, the kinds of cuts that were alluded to before and spoken about deal with, essentially, the more front-end of prevention and chronic disease early detection, whereas the specific issue we are talking around is really sitting in the acute space. Certainly, it is an issue we continue to raise.

What we are waiting and hoping for is that when the Indigenous health plans are released, the implementation plan, we see some concrete measures around some of these issues. For us, with kidney disease, we are working very hard to try to see it is a continuum from prevention and early detection through to treatment issues. Throughout that continuum, whether you are an Indigenous person or a non-Indigenous person, you are jumping between federal and state governments at various points. The slip between cup and lip can be pretty profound for some of them.

Senator McLUCAS: Thank you very much for your submission. It is very helpful, from its specificity around APY lands through to 'How do we stop this?' I want to talk about prevention. What is the way that most people get diagnosed with some sort of kidney problem? Who does that first?

Prof. Mathew : In the Indigenous space?

Senator McLUCAS: Yes.

Prof. Mathew : It would be in primary care. It would be done most commonly now in the area of the chronic disease programs, which are set up—in particularly remote communities—to detect and monitor such conditions. It would be my expectation, and the facts would support it, that in a remote community of 500 people 450 would have had a urine test and blood test done in the last two years to try to detect various chronic diseases, including kidney disease.

Senator McLUCAS: Where would that be in an urban setting?

Prof. Mathew : The information there is much less clear. If urban Aboriginal people manage mainly as non-Indigenous people do, then the detection of kidney disease is a chance factor. We have spent the last decade trying to educate GPs and those in primary care on the benefits of such detection, by doing routine kidney checks in high-risk people.

We can show it is cost-effective if you have one of the risk factors, which are now well identified and which cover about a third of the adult population. The red book of the College of General Practitioners embraces that evidence, that it is cost-effective. It is so cheap to do a urine test and a blood test that it is comparatively easy to show that is true. We are bedevilled by the fact that it is not symptomatic. The minority of people present with swelling, frothy urine, headaches and high blood pressure or some symptom like that that you can pin down to a kidney. We wish many times that mild kidney disease would cause pain—it would drive you to a doctor and early detection. We know if you do detect it early we can make a difference.

Senator McLUCAS: If, by the time you know that you have a problem, 90 per cent of your kidney is not working, that is problematic.

Ms Duff : That is reinforced by ABS biomedical survey. Results came out that said 9/10 Aboriginal and Torres Strait Islander people do not know they have signs of CKD. There is a whole range of evidence around that there is not a lot of awareness in Aboriginal and Torres Strait Islander communities.

Prof. Mathew : Which is the same in the non-Indigenous score.

Senator McLUCAS: Are you saying that diagnosis is done better in remote places?

Prof. Mathew : Yes. That is now distressingly true, in a sense, for the bigger population. It is a good model, of course. It shows that if you do have programs in place in small communities they can be successful and they should be replicated in the large ones.

Mr Toy : Our view—and limited experience in this space has shown this—is that a really well-run community health service is some of the best primary care if not the best you can get in Australia.

Senator McLUCAS: In Cairns.

Mr Toy : Absolutely.

Senator McLUCAS: That was an ad!

Prof. Mathew : I would draw your attention, if I may, to an article in the British Medical Journal, in 2013, by Wendy Hoy, who is one of the acknowledged leaders in Indigenous kidney disease. It is titled, Chronic disease care in remote Aboriginal Australia has been transformed. If you have not seen it, we would be happy to supply a copy.

Senator McLUCAS: Thank you. That would be good to read.

Prof. Mathew : It is a brief summary of the good things that have happened in this space.

Senator McLUCAS: I think your recommendation to us is that the streamlined PIP payment would assist with those non-remote diagnoses.

Mr Toy : Absolutely.

Senator McLUCAS: We will keep our eye on that.

CHAIR: Professor Mathew, could I ask you, if you would not mind, to table that document?

Prof. Mathew : Yes.

CHAIR: Wonderful. Senator Cameron is going to receive it and we will get a copy pretty shortly from the secretariat. We appreciate that. Senator Cameron.

Senator CAMERON: Thank you very much for your very comprehensive submission. I suppose one of the things that you do not say in your submission but which underpins it is that kidney health is affected by poverty—isn't it?

Ms Duff : What we know, from our consultations and some of the research, is that 50 per cent of kidney disease is as a result of unmanaged or badly managed diabetes. But in remote areas it is a result of social determinants: poor housing, lack of access to water. They are indicators of poverty, yes.

Prof. Mathew : My thinking is that all the facts we know about the non-Indigenous population and kidney disease are replicated in the Indigenous people but are amplified by a factor of two or three in the urban environment but by up to 10, 12 or sometimes 30 times in the remote communities. So the answer to your question is yes. We have got evidence to prove that in the lower quintiles of socioeconomic status kidney disease is twice as common as it is in the upper quintiles. It is my personal view that we are not going to make a real difference to the incidence of early kidney disease in Aboriginal people until we affect the broader issues about lifestyle and community.

Senator CAMERON: I might come back to that, but I notice on page six of your submission you say that you are concerned that reforms to Medicare do not severely impact Aboriginal and Torres Strait Islanders. On one hand you are saying that it is very difficult to diagnose kidney disease. But are you saying that if people get regular access to medical attention then the likelihood of identifying kidney disease early is increased?

Prof. Mathew : Yes, you can only identify kidney disease by doing these tests—biomarkers, whatever you call them, the blood and urine tests. Obviously if you do not go to your healthcare system you cannot have those tests done.

Senator CAMERON: So if Indigenous communities cannot access medical support because of a co-payment, is that a problem?

Prof. Mathew : I would like to step back into the non-Indigenous area and say that with all the chronic diseases the co-payment presents a huge issue because the standard of care for chronic disease is repetitive. You need to have a check with your local doctor every two or three months, with your specialist every three to six months, and on it goes. With the example I quoted before, where an individual might be seeing 10 different healthcare providers separately, if there is a co-payment it just multiplies out to an unmanageable position. And you add to that the diagnostic issues—everyone who sees me has to have a blood test first, so that is doubling up on the potential co-payment. For chronic disease patients of all sorts, co-payments are a huge issue.

Senator CAMERON: Has anyone at the table been involved in medical research issues? I asked the department about the implications of not getting to a doctor early enough and the costs to both health and the economy of not getting access. This is what Mr Stuart said—he was the acting deputy secretary, I think, at the time; that can be clarified—to the committee on 5 February:

There are significant methodological difficulties, and significant time is required to do any kind of meaningful research on the impact of co-payments, which is why most of the commentators reflect and the literature reflects on research which has in fact been done internationally—

saying, basically, look at the international research—

and is now getting quite old and involved randomised allocation of patients to different levels of co-payment or no co-payment, in the RAND study—

I am getting a bit lost, I must say!—

that research is now getting quite old. It is very difficult to do. The logistics and perhaps the ethics of randomised allocation of patients to different levels of payment within a health system is very difficult. So I think what you are asking would be a very large national or international piece of work.

He then went on to say, about a co-payment's implications for health and costs:

The international evidence and research is very equivocal and not directly related to the current Australian situation.

I am absolutely appalled by that position of the department, when professional medical experts are coming here and telling us time and again that, if you do not get in quickly, it is a cost; it is a cost to health and it is a cost to the economy. How could anyone in a senior position in the health department come to this conclusion? Is there any other evidence out there? Because we are getting completely the opposite evidence.

Prof. Mathew : I would not deign to make a comment, but I could say that most of the text you were referring to is demanding what you might call level 1 evidence, where, to be 99.999 per cent secure, you have to spend a lot of time, have a lot of people, and spend a lot of money in a complex project. You can get a 95 per cent certain answer with a much cheaper, quicker research program than Mr Stuart is demanding.

Senator CAMERON: Okay. But your professional opinion is that the evidence we have from the department is not consistent with your views; is that correct?

Prof. Mathew : I do not know. I work in the western suburbs of Adelaide, which are in the lower part of socioeconomic status, and I never charge a co-payment or a gap. I do not do that, because I know all my patients will be disincentivised to come back when I want them to come back and when I believe they should come back for a check in a three months or six months—all that stuff. So my life has been spent with the belief that any financial disincentive would impact on best care, yes.

Senator CAMERON: That is excellent. Congratulations, Professor. I want to come back to this issue: if the department is challenging the evidence that we have in relation to the effect of a co-payment, is the department right or are you guys wrong?

Mr Toy : We ourselves have not completed in-depth research into the impact that the type of co-payment that has been put forward would have on the propensity to go to a GP. We are noting that 90 per cent of kidney function can be lost and 90 per cent of Indigenous people with signs of chronic kidney disease were not aware that they had it; and we contrast that with the fact that end-stage kidney disease requires dialysis, which in 2009 prices, when we costed it, was around $80,000 per person per year. Not detecting kidney disease early and anything that creates, I guess, a barrier, or any levels of efficiency that we cannot adopt—such as the idea of an integrated health check—are going to create a situation where we end up in a very high-cost environment very quickly.

CHAIR: Thank you very much, Mr Toy. I think, Professor Mathew, you are not on your own in the articulation of your decision-making around people's health care in your life's work and your experience, having taken an oath to be a professional. We really appreciate the service that you have given and we understand that you need to get people to come back to help them to be healthy, rather than make it harder for them to come back.

Thank you very much for your evidence this morning. If we have any further questions for you, the secretariat will be in touch.

Mr Toy : Thank you again.