Aboriginal patients are significantly less likely than non–Aboriginal patients to get a transplant.67 There are challenges to increasing their likelihood of transplant particularly existing high levels of co–morbidity, poorer transplant outcomes, both in terms of degree and duration of graft function, substantially higher mortality rates and difficulty in predicting the post–transplant course based upon typically available biological and demographic measures.
Nevertheless Aboriginal patients themselves have a high interest in transplant and choose to have transplants. In the IMPAKT study, over 150 Aboriginal dialysis patients – primarily remote area patients – were asked about their interest in transplant.7 Only ten were either not–interested or definitely against the idea. Transplant appealed because it is a treatment that can potentially return people home and give them back a ‘normal’ life:
If I could get one, maybe, I’m happy to go back home (IMPAKT interview 3–009)
I’d be happy to get up and move around and do things (IMPAKT interview 4– 016)
Why do I want to get one [transplant]? Because of my health, I don’t want to suffer the whole time. I don't want to be in a sick state, I want to get back to normal, get a kidney and get back on with life. I don't want to suffer too long, that’s what it’s all about, getting a new kidney, that you can move on from that and just to not to be on [it] too long. (IMPAKT JD178)
Patients’ comments suggested some discomfort about the origin of transplanted kidneys and misgivings about taking another person’s organ. Many reported difficulties discussing the topic with family members and other non–patients. Some Aboriginal health workers expressed surprise and curiosity that Aboriginal patients were so interested in transplantation. Where patients met reservations from their family, most were prepared to negotiate acceptance of their decision.
And I’ve talked to people from outside, like, who’s got good kidneys, and they said, Don’t go on it, don’t put yourself on the list. And they kept talking me the other way. It’s a one–way thing, they say, if you have an operation, you’re finished, that’s it. They refusing me [to do it]. They don’t like the idea, especially the family... I’m keen to have it, I’m excited to have it. They told me, Oh, you’re going to be away for a long time in hospital ... I said that’s alright. (IMPAKT 3–086)
From the patient perspective, people who are not on dialysis are unable to fully understand the position of the patient and the opportunity, rather than the danger, that transplant presents.
Currently, patients though to be suitable for transplantation by their caring nephrologist in Alice Springs are referred for assessment by a team from the SA Renal Transplant Service. A nephrologist and transplant surgeon visit Alice Springs to perform these assessments. Patients from the CA region, whether from WA, NT or SA, are treated equally in the allocation process. Considerable discussion has occurred recently about addressing the barriers to successful transplantation. However, progress in this field has been limited. From the perspective of the Central Australian region, transplantation is likely to remain an option for only a minority of people and is not likely to impact on the numbers of people requiring dialysis treatment over the next 5 years.