Program: Indigenous people less likely to be waitlisted for a kidney transplant

Norman Swan: And coming up here on the Health Report, we're going to be talking about the human exposome project, the next thing after the Human Genome Project, which looks at the universe of exposures that we're exposed to and what the effects might be on our health or our children's health. 

And you've got a story, Olivia, on another gap between Indigenous and non-Indigenous Australia over a disease where Indigenous people, First Nations people, have the highest burden of this disease. It seems an incredible inequity.

Olivia Willis: Yeah, that's right. So we're talking about kidney disease, and we know that for people with end-stage kidney disease, or also called kidney failure, that getting a transplant offers the potential for a longer, healthier life, in contrast to if you're on dialysis.

Norman Swan: And just before you go on, I mean, dialysis is involved. There is mobile dialysis for Aboriginal communities, but dialysis is hard in the best of circumstances, and it's so much harder for First Nations people outside major metropolitan areas.

Olivia Willis: And I guess in addition to that, Aboriginal and Torres Strait Islander people also face the barrier of actually getting onto wait lists for kidney transplants. So just 2% of Indigenous dialysis patients are wait-listed, compared to 8% of non-Indigenous patients. And there's some new research that has set out to understand really what's driving those delays, what's driving this inequity. And to learn more about it, I spoke with Professor Jacqui Hughes, a kidney specialist and one of the leaders of the National Indigenous Kidney Transplantation Task Force, and Professor Stephen McDonald, a specialist in the epidemiology of kidney disease at the University of Adelaide.

Jacqui Hughes: This is a long piece of work led by the National Indigenous Kidney Transplantation Task Force. Many Aboriginal and Torres Strait Islander families are affected by kidney disease, and that includes a journey with kidney failure, for which in Australia we know that transplantation is a very important opportunity. It's a method of care which has less interference. You know, you could be more independent in your living and living well by having transplantation.

Olivia Willis: Okay, and my understanding is, prior to the research, it was well understood that there were inequities in disparities in terms of Aboriginal and Torres Strait Islander people actually getting on a wait list for a kidney transplant. And what the research did was try and understand what are some of the factors contributing to that. So what were the most common reasons cited for why wait-listing wasn't happening?

Stephen McDonald: The delays were getting onto the kidney transplant list, and once you're on the waiting list, there wasn't that much or any difference between Indigenous and non-Indigenous people. So this piece of work is really asking now more detailed 'why' questions. So what is it about what is quite a complex process of getting onto the waiting list that leads to the delay? The answer to the question does vary with age, so that if you look at the younger age groups, it's more common to have people who are not listed because they haven't been able to complete the various tests on the work up, or they're still waiting for transplant assessment, or they simply haven't had their eligibility assessed. If you look at the older groups for both Indigenous and non-Indigenous people, there are contraindications, particularly temporary contraindications to transplantation, become more major factors. What these pieces of information do is inform what we need to do to address the problem.

Olivia Willis: One of the things that you raised is issues around that a lot of patients were waiting for assessment or their eligibility hadn't yet been assessed. Do we understand what's driving that? Why that isn't happening, that assessments aren't being done in a timely way, or that people aren't…you know, their eligibility isn't being assessed?

Stephen McDonald: So we didn't directly ask that question in this paper, but we do have some information about that area from other works. So we sponsored some pilot programs in WA in South Australia, Northern Territory and Queensland that trialled some mechanisms to improve access to assessment, and they included things like outreach visits, so having the physician, surgeons and the transplant team leave the capital city and go remotely. They included patient navigators. So we do know that those interventions improved the number of people who got through the various work up tests and were wait-listed.

Olivia Willis: And Jaqui, could you tell us about how you understand those reasons interact with some of the more systemic barriers that Aboriginal and Torres Strait Islander people face in the Australian healthcare system?

Jacqui Hughes: So the National Indigenous Kidney Transplantation Task Force has been working alongside a federal government requirement for us to understand our business in terms of cultural bias. So other terminology that can be used for that is institutional racism and systemised racism, which means that people aren't able to access care because the system doesn't promote that. And so we can change our systems and our models of care to better connect people who don't live close to those transplanting centres to be assessed. And then in terms of the structural racism, we can create structures of funding which actually recognises models of care that need to be delivered so that people have equity and access to transplantation. And then structural also, as well as the health is political, and having politicians being well informed about what is the work needed for a healthy community and a healthy electorate is very important.

Olivia Willis: And Stephen, one of the reasons you mentioned there was a delay or that was cited as a reason why people weren't wait-listed was because patients had co-morbidities that are considered contraindications for kidney transplant. So you mentioned obesity, I think cardiovascular disease was another one. Does that tell us that tackling this problem requires a more comprehensive approach to addressing these comorbidities, that it's not just about factors specific to kidney transplantation?

Stephen McDonald: Yes, it does. And kidney disease is a disease that affects and is associated with a wide variety of other conditions, and they all need to be tackled. We treat the whole person, not the individual disease. And there's no way to address this issue without a broad-based collaboration. And that includes, for example, dental care. Having healthy teeth is a really important part of the workout for transplantation, because if you have infection in the gums, and that can cause an enormous problem after transplantation, but accessing dental care is often a really major barrier, particularly if you live very remotely. And similarly, if you think about the measures needed to improve people's cardiovascular health, people's diabetes, as well as the individual medication, there's a really important bunch of things that need to be done around the environment people live in, the access to healthy food and so on. So it is much more than just a narrow focus on kidneys.

Jacqui Hughes: In some regards we weren't surprised by the findings because we know that when there's a high proportion of young people, that is Australians who are less than the age of 60 who have so much chronic disease that are needing to have highly intensive, frequent treatment with dialysis, which is three times a week, so high contact with complex health services, it's not surprising to have so many people there, and to have a gap into transplantation, that we would learn that there would be barriers. But we've been able to work out now that we can track when people have access to work up and they achieve work up. And so this data dashboard that's been created as legacy work from this work confirms that we should be able to report annually that we are rapidly transiting from long-term living on dialysis, try and reduce that time so they can actually move into transplantation. One area of innovative practice with accountability going forward is establishing a council of Aboriginal and Torres Strait Islander people who can actually use the data that we create through dashboards and to work with clinical expertise and technical advisors as how to promote the system going forward, and it's the right of Aboriginal and Torres Strait Islander people to require systems that work for us and for our benefit.

Olivia Willis: So the National Indigenous Kidney Transplantation Task Force, you'd like to see specific reporting of wait-listing rates for Aboriginal and Torres Strait Islander people going forward.

Stephen McDonald: Yeah. So there's a number of recommendations from the task force, and these that actually were presented to and have been incorporated in the Australian government's National Transplantation Strategy, which was released last year, around 12 months ago, has not yet been implemented, and there's an active discussion about that. What's in there includes outreach visits, patient navigators, Indigenous reference groups, but it also includes this really important need for accountability, for being transparent about how the resources are being used. And so what that boils down to is regular reporting on dashboards and similar of how individual hospitals are going, so that as a patient or as a doctor or a nurse or some worker in the system, I can have the information that says at my hospital, how am I going getting people onto the waiting list overall, and how am I going for Aboriginal and Torres Strait Islander people, for non-Indigenous people, for other groups, having that information is a really important, empowering step to closing the gap. 

Jacqui Hughes: I think it's pretty confronting as a community to see data which shows how little we've had access to treatments that are regarded as standard and best practice. We take great care in being able to communicate that well to Aboriginal and Torres Strait Islander people and our national gatherings have been very important to do that. It's really important to acknowledge that this work of the task force is being championed by the federal government, and so at our last meeting we put to them that kidney disease hasn't been put on the national agenda for closing the gap, but it affects so many families who have chronic kidney disease, so let's actually put the prevention of chronic kidney disease and that we care to actually give people the opportunity for transplantation, but it's actually something that the Australian community can have account for, that the system works well for chronic kidney disease and for promoting kidney health in Australia.

Olivia Willis: That was Professor Jacqui Hughes from Flinders University, and Professor Stephen McDonald from the University of Adelaide.