Abstract
The rate of living kidney donation from 2006 to 2012 was roughly the same in Australia and New Zealand, but the rate of Good Samaritan donation was significantly higher in New Zealand (1.49 donors/million) than in Australia (0.23 donors/million). Three possible reasons for New Zealand's high rate of Good Samaritan donation are explored: (1) since 2005, New Zealand has offered a tax-free financial safety net for living donors; (2) unlike Australia, New Zealand is not carved into jurisdictional segments with multiple policies on Good Samaritan donation, lending to a streamlined approach; (3) New Zealand embraces e-technology to communicate the concept of Good Samaritan donation to the public. Additionally, New Zealand's recent initiatives to increase the rate of living donation are described.
As with most parts of the world, chronic kidney disease in the Oceania region is a significant health problem. The Oceania region comprises 14 countries; however, only 2 offer organ transplants: Australia and New Zealand. One in 3 Australians are at an increased risk of chronic kidney disease developing, 1 and the incidence of those receiving renal replacement therapy is projected to increase by at least 54% in 2020 from levels in 2008. 2 In New Zealand, approximately 1000 adults have end-stage kidney disease diagnosed each year, and about half of those persons will start dialysis. 3 End-stage kidney disease is clinically serious, burdensome, and financially costly. Although various forms of dialysis are available such as peritoneal dialysis and hemodialysis, existing international evidence and local costs indicate that for those patients who are suitable candidates, kidney transplant is more cost-effective than any form of dialysis. 2 Kidney transplant is also associated with improvements in survival and quality of life when compared with dialysis. 2 Consequently, increasing the kidney transplant rate would result in not only considerable health sector savings but also markedly improved health outcomes.
Australia and New Zealand have dismal rates of deceased organ donation (see Table) but both permit living donation, including Good Samaritan donation (living organ donation to a person with whom there is no genetic, legal, or emotional relationship), in an attempt to increase transplant opportunities. Additionally, living donation provides better outcomes than deceased donor transplants provide. 8 New Zealand pioneered the first Oceania region Good Samaritan donation in 1998, with Australia following in 2004.
Oceania donation and population statistics
Australian and New Zealand live donor data sourced from ANZDATA Registry 2011–2013 Reports.4–6 Australia and New Zealand deceased donation data sourced from the Australia and New Zealand Organ Donation Registry 2013 Report (Figure 1.1). 7
Australian data provided by the Australian Bureau of Statistics. New Zealand data provided by Statistics New Zealand. Good Samaritan donors are usually age 18 years and older; however, population data were not available for the age range 18 to 64 years.
New Zealand outperformed Australia yearly in Good Samaritan kidney donation (donors per million) as follows: 2006, P = .001; 2007, P = .202; 2008, P < .001; 2009, P < .001; 2010, P < .001; 2011, P = .105; 2012, P = .021.
Exploring Oceania living donation rates from 2006 to 2012, we identified that the rate of living kidney donation is roughly the same in Australia and New Zealand, but the rate of Good Samaritan donation is significantly higher in New Zealand (see Table). Herein we explore 3 possible reasons for New Zealand's high rate of Good Samaritan donation: (1) since 2005, New Zealand has offered a tax-free financial safety net for living donors 9 ; (2) unlike Australia, New Zealand is not carved into jurisdictional segments with multiple policies on Good Samaritan donation, lending to a streamlined approach; and (3) New Zealand embraces e-technology to communicate the concept of Good Samaritan donation to the public.
Financial Assistance for Living Donors
Although both Australia and New Zealand have similar rates of living kidney donation, New Zealand has provided financial assistance to donors since 2005 (up to 12 weeks nontaxable financial assistance due to lost income and/or extra childcare costs), 9 and this may be a mediator in facilitating Good Samaritan donation. In a recent Australian study 10 of public attitudes and beliefs about living kidney donation, including Good Samaritan donation (conducted before the July 2013 implementation of Australia's pilot 6-week taxable paid leave program), 11 researchers found financial concerns as a data theme. Specifically, study participants considered the burdens of taking time off work, medical expenses, and travel and housing costs as negative financial consequences. They also worried about career disruption and the potential for elevated health insurance premiums.
In another Australian study, 12 a Good Samaritan donor commented to the research team,
They should have done that [financial reimbursement] years ago really, it might encourage more people to do it. Because I think the financial burden is probably a stumbling block for people who are thinking, yeah I've got one, I'd like to do it but I can't afford to.
Before Australia's 2013 implementation of the pilot paid leave program, the only other donor funding options were limited travel assistance offered by select states: Victoria, 13 Western Australia, 14 New South Wales, 15 South Australia, 16 and Tasmania. 17 These travel programs are still available to living donors; however, in general, residency requirements restrict access to those who reside within the respective state. The programs exclude financial assistance for nonresidents to travel to those states to participate as living donors. The only exception is the Patient Assistance Transport Scheme 16 offered by South Australia, which does permit financial assistance for nonresidents to travel into the state for the purpose of donation. Tasmania's Patient Travel Assistance Scheme 17 provides financial assistance to residents to travel out of state to participate as donors, and the Australian Capital Territory offers a travel assistance program for residents planning to travel out of state to be living donors to their domestic partners or spouses (but not to strangers). 18 Neither Tasmania nor the Australian Capital Territory have transplant hospitals in their regions, so travel assistance programs can be helpful to those who qualify.
The lack of a robust financial assistance program in Australia could have potentially been holding back individuals from donating to a stranger (compared with uncompensated donation to a relative). We speculate that donors are more willing to make financial sacrifices in the setting of donating to a friend or relative (eg, in order to preserve relationships or family lineage) but less willing in the setting of strangers. In other words, financial assistance programs might be less of a variable in decision making about donations to friends and relatives, but more significant in decisions about donating to strangers because these donors are perhaps less willing to make financial sacrifices when there is no emotional connection to the recipient. Along these lines, New Zealand's financial assistance policy has not boosted general living donation above the rate in Australia. Research should be undertaken to monitor the impact of Australia's 2-year pilot program on both directed and nondirected living donation.
New Zealand Geopolitics
Unlike Australia, a nation divided into various states and territories, New Zealand lacks these divisions, facilitating uniformity in donation policy across the country. In Australia, for example, the state of Queensland does not permit Good Samaritan donation and residents must travel out of state (or country) if they desire to donate to a stranger. 19 Policy hurdles such as this (and those evidenced by Australia's multiple, restrictive travel assistance programs)13,14 create logistical barriers that can derail potential donations.
Our hypothesis is supported by data from a recent study 10 in which Australians across 3 states were asked about their attitudes and beliefs about living kidney donation, and the theme of “decisional autonomy” was revealed in their responses. When asked to provide their thoughts on “altruistic anonymous donors” [the permissibility of the practice], some participants felt that there are “too many laws [in Australia] about their own body.” 10 As one participant stated, “It's your [my] kidney and if I wanted to donate so badly and if I couldn't do it here, I'd fly to Thailand or fly somewhere where I could do it.” 10 Another participant stated,
It's totally overlegislation, nanny state, big government stuff; people should have a choice to give a kidney. We shouldn't have all these regulations; people should be able to make their own choices in these matters. 10
e-Technology in New Zealand
Patients and potential donors do not merely search the Internet when looking for donation and transplant information, they specifically aim to reach out to hospital websites.20,21 Three transplant hospitals in New Zealand are involved in Good Samaritan donation, and each hospital's website mentions the concept. Christchurch Hospital lists “altruistic donation” and Auckland City Hospital and Wellington Hospital list “not related,” although it is unknown when this content originated on each site. In a recent study 22 examining Australian transplant hospitals' websites, researchers reported that only 2 of 15 mentioned this type of donation. Perhaps such hospital disclosure creates community awareness in New Zealand.
Across New Zealand, there are numerous examples of Good Samaritan donors discussing their donation experiences. In March 2006, the Canterbury Research Foundation sponsored a community lecture at the Christchurch School of Medicine (at Christchurch Hospital) during which a Good Samaritan donor was the guest speaker. This lecture was advertised in the local newspaper 23 as well as the Canterbury Medical Research Foundation's online newsletter. 24 Another Good Samaritan shared her 2012 donation experience in photos on Facebook (www.facebook.com/shelley.taotala). Similarly, Kidney Health New Zealand has promoted the donation experience of a 2011 Good Samaritan donor on its Facebook page. 25 The Auckland District Health Board promotes the 2011 donation experience of another Good Samaritan New Zealander on their website. 26
Additionally, the website of Organ Donation New Zealand, the national organization that coordinates the donation of organs and tissues across the country, devotes a page to the 2011 kidney donation story of a Good Samaritan donor from Hamilton, New Zealand. 27 The organization also posts the donor's story on their Facebook page. 28 This multiplicity of Internet content sends a strong signal of Organ Donation New Zealand's support for Good Samaritan donation. By contrast, DonateLife (Australia's national organization that coordinates organ and tissue donation) presents no Good Samaritan donor stories on its website (www.donatelife.gov.au) or Facebook page (www.facebook.com/DonateLifeAustralia). Although we cannot make formal claims that such Internet presence is the cause of increased donation rates, we also cannot underestimate the power of the Internet, social media outlets such as Facebook, and clinical narratives to potentially influence human behavior in the matter of organ donation.29–31
Moving Forward in Oceania
We explored donation rates from 2006 to 2012. Since that time, New Zealand has continued its efforts to inform the community about the opportunity of living donation to strangers. A new initiative was recently launched in New Zealand; namely, Live Kidney Donor Transplantation Aotearoa (kidneydonor.org.nz). Aotearoa is the Māori name for New Zealand. Started in 2014, this program aims to educate, promote, and facilitate live kidney donation (including Good Samaritan donation) in New Zealand. Their targets are to develop culturally appropriate educational resources that build health literacy within the community and engage community leaders to increase community health awareness. The program focuses on reducing the waiting list for kidney transplants by education and addressing inequalities in Māori and Pacifica populations. The program targets a yearly increase of 20 living donor kidney transplants in Māori and Pacifica patients, 10 of which would be predialysis transplants, as well as increased awareness of chronic kidney disease, improved educational resource allocation for community and professional development, and cost reductions due to dialysis avoidance. In conjunction with Live Kidney Donation Aotearoa's various educational programs, it increases community awareness through its website and media campaigns. The website provides easily accessible information on kidney disease, multimedia narratives, and links to relevant sites including Kidney Society Auckland (www.kidneysociety.co.nz) and Kidney Health New Zealand (www.kidneys.co.nz).
Another recent New Zealand initiative is Give a Kidney NZ (www.giveakidney.co.nz, www.facebook.com/GiveaKidneyNZ). Founded in 2013 by 2 Good Samaritan kidney donors and a Good Samaritan kidney recipient, the organization promotes such donations by sharing the experience of donors and recipients in New Zealand. By sharing these experiences, the narratives enhance the informed consent process for those considering donation. The organization also provides educational content, resource links, and contact information for transplant coordinators across New Zealand.
Simple (and low-cost) enhancements to Australian transplant hospital websites could potentially increase community awareness about Good Samaritan donation. 22 Also, Australia's DonateLife website could include enhanced content about Good Samaritan donation, such as donor stories. Additionally, New Zealand and Australian transplant hospital websites could be enhanced by linking website viewers to their national paired exchange program, linking to their national agency that records donor status, and linking to and displaying the logo of their national organ donation agency. Currently, these linkages do not exist.
Benchmarking against other successful programs, Australia and New Zealand could each establish (and potentially share) a living kidney donor registry similar to that which operates in the United States (www.kidneyregistry.org). Also, the current national organizations that coordinate deceased donations in Australia and New Zealand could establish formal entities focusing entirely on living donation. This model also currently operates in the United States (livingdonationcalifornia.org).
Future research to identify the reasons for the low rate of Good Samaritan donation rate in Australia (as compared with its New Zealand neighbor) could potentially include a national community survey regarding awareness of the topic, as well as personal views about such donations.
Lastly, the international standardization of 1 term to represent living organ donation to a person with whom there is no genetic, legal, or emotional relationship would be beneficial for researchers, clinicians, patients, and donors. Currently, multiple terms are used to describe this type of donation (eg, stranger donations, nondirected, altruistic, unrelated, nonrelated, not related, Good Samaritan, benevolent, anonymous, unspecified), and this can potentially cause confusion. 32
Footnotes
Acknowledgments
Portions of this manuscript were orally presented at the 12th Congress of the International Society of Organ Donation and Procurement (Sydney, Australia, November 24, 2013).
Data reported here have been supplied by the Australia and New Zealand Dialysis and Transplant Registry and the Australia and New Zealand Organ Donation Registry. The interpretation and reporting of these data are the responsibility of the authors and in no way should be seen as an official policy or interpretation of the Australia and New Zealand Dialysis and Transplant Registry or the Australia and New Zealand Organ Donation Registry.
None reported.