© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd

Clin Transplant 2014: 28: 423–427 DOI: 10.1111/ctr.12334

Clinical Transplantation

Living kidney donation: the importance of public education Tumin M, Rasiah R, Noh A, Satar NM , Chong C-S, Lim S-K, Ng K-P. Living kidney donation: the importance of public education. Abstract: A sample of Malaysians in the Klang Valley indicating their decision on becoming unrelated living kidney donors was surveyed regarding huge amounts of financial incentives to be rewarded to them. From the 1310 respondents, 72.1% said “no” on becoming a living donor. The reason “I don’t think humans can live with only one kidney” scored the highest (35.6%), and from the 27.9% of the respondents who are willing to donate their organ with the right financial incentive, most of the respondents picked the reasons “I want to do something noble in life” (50%), and monetary reason scored the lowest (6.2%), indicating that financial incentive is not a major reason guiding individuals’ decision on becoming living donors. We suggest that the government should put priority at targeting public education to raise the understanding on the risk, safety and the quality of life of donation and transplantation, and improving the public trust on the donation and the surgical methods to carry out transplantation.

Makmor Tumina, Rajah Rasiahb, Abdillah Nohc, NurulHuda Mohd Satard, Chin-Sieng Chongd, SooKun Lime and Kok-Peng Nge a

Department of Administrative Studies and Politics, Faculty of Economics and Administration, University of Malaya, Kuala Lumpur, bDepartment of Development Studies, Faculty of Economics and Administration, University of Malaya, Kuala Lumpur, cTun Abdul Razak School of Government, Universiti Tun Abdul Razak, Kuala Lumpur, dDepartment of Economics, Faculty of Economics and Administration, University of Malaya, Kuala Lumpur and e Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia Key words: financial incentives – living kidney donors – Malaysia – organ donation – public education Corresponding author: Makmor Tumin, PhD, Department of Administrative Studies and Politics, Faculty of Economics and Administration, University of Malaya, 50603 Kuala Lumpur, Malaysia. Tel.: +603 79673690; fax: +603 79673719; e-mail: [email protected] Conflict of interest: The authors hereby declare no conflict of interest. Accepted for publication 28 January 2014

There is a serious deficit in the supply of human organs for transplantation. In Malaysia, conventional methods aiming at increasing organ donation are bearing little effect. Policies based on the altruistic model have hardly been successful as donations from the deceased only came to 0.48 per million people (1). Such a low donation rate is definitely not helping Malaysia’s growing list of people who are waiting for organs. In fact, the waiting list for kidney transplants in Malaysia has almost tripled – from 5542 in 1999 to 15 489 in July 2012 (2). To put into perspective, Malaysia’s record in organ donation has been dismal. Only 1302 living

kidney donations have been performed in the country between 1975 and 2011 (3, 4). Understandably, the deficit in the supply of human organs for transplantation has prompted the government to explore various initiatives. For instance, the government introduced a policy on unrelated living organ donation in 2007 to address a shortage of organ donors (Article 6.2.3) (5). Malaysia strengthened this policy in 2011 by making the procedures more specific (6). Talks are already underway since 2013 to fine tune the policy to encourage organ donation through offering compensation to donors.

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However, what is in question is whether we have a superior option than compensation-based donation to overcome the mismatch between the demand and supply of organs? One study suggests that the right financial incentive can solve the problem as it will help raise organ supply from living donors to match organ demand (market equilibrium [7]). But even if compensation can increase organ supply, introducing such a policy may raise other problems. At the heart of the problem are questions of whether societies are ready for an incentive-based organ donation system? Will providing financial incentives to unrelated donors be socially and ethically acceptable? Can compensation in the form of financial incentives to unrelated donors address the low rate of organ donations in Malaysia without any abuse of such policies? Finally, are there other alternatives? There is always the fear that using compensation to attract donors would cause problems. Governments fear that compensation, especially to unrelated donors, will invite organ trafficking. The World Health Organization insists that financial reward should be excluded from the equation. Critics view that a policy allowing compensation for organ donation is a convenient way for governments to commercialize organs. The WHO argues providing compensation for donors contravenes the Oviedo Declaration, the Strasbourg Protocol, and the Declaration of Istanbul. For instance, the Istanbul Declaration does not support financial incentives for donors. The declaration calls for “comprehensive reimbursement” as it stipulates: “Comprehensive reimbursement of the actual, documented costs of donating an organ does not constitute a payment for an organ, but is rather part of the legitimate costs of treating the recipient. . .” (8). How best then can the government solve the problem of low organ donation rate in this country? Hence, using a survey, this paper aims to find out about the importance of incentives as a policy instrument to solve the problem of organ shortage in Malaysia. Materials and methods

A survey to gauge public opinion on becoming deceased and unrelated living kidney donor was carried out in the Klang Valley (Kuala Lumpur and its conurbations) from October to December 2010. Klang Valley was chosen as the study area because of its demographic profile that mirrors Malaysia’s ethnic profile. We control the data by ethnicity in which the enumerators were told to adhere to the ethnic breakdown when approaching

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potential respondents. They were also told to stop approaching people from a particular ethnic group, once the quota was met. Self-administered questionnaire was developed, in which pilot-tested questionnaire was used to collect information on respondents’ willingness to become donors (enumerators were expected to provide assistance to the respondents should they have any inquiries). We approached 1420 people, and 1310 agreed to participate on the unrelated living kidney survey, giving a response rate of 92.5%. Three designated areas were chosen: university campuses (well suited to take in young peoples’ views), hospitals (a captured area for potential organ donors and for those with strong views on health issues), and eateries (a wider spectrum of respondents) for the purpose of data collection. It is almost impossible to get unrelated living kidney donors in this country, in which there are no unrelated kidney donors. Knowing this, we started the living donation section by soughting the hypothesis that “a huge amount of financial incentives from the government will raise organ donation from the living.” We raised the amount of financial incentive (used as an instrument) to Malaysian Ringgit (MYR) 50 000 (U.S. Dollar 16 233) (the highest amount of financial incentive to living kidney donors under government-compensated system is in Saudi Arabia – U.S. Dollar 13 300). The respondents were also informed of scientific assurance that humans with one kidney can also lead a normal life (9). For this purpose, the respondents were asked to respond to the question: “Would you be willing to donate one of your kidneys if the government comes up with a policy to reward you with a huge amount of incentive?” We then probed those who said “no” by the level of their income and examined their reasons for citing so. Six options were presented, and they were allowed to choose more than one of them. Our experience dealing with related kidney donation suggested that giving more options will give a more meaningful response to understand the reason why people are unwilling to become living donors. The six options were selected from a list of questions that the group developed from our experience dealing with related kidney donation. The options were as follows: (i) I’m not medically fit; (ii) I’m not convinced that humans can live with only one kidney; (iii) I don’t think religious authorities will allow it; (iv) I’m not convinced that I will receive the financial incentives when I donate my kidney; (v) I’m scared of surgery/operation; and (vi) Others. We also investigated the reasons for saying “yes” to donation by their level of income by presenting them with five options from which they

Living kidney donation were allowed to choose only one. Our pilot survey indicates that respondents have little reason to say “yes” over the issue of living donation. The options were as follows: (i) I badly need the money; (ii) I really want to help kidney patients; (iii) I want to do something noble in life; (iv) I just do not know why; and (vi) Others. Results

Of 1310 who responded to the survey question “Would you be willing to donate one of your kidneys if the government comes up with a policy to reward you with a huge amount of incentive?,” 365 (27.9%) said “yes,” while 945 (72.1%) of the respondents said “no,” which is similar to the result in another study (10). The sample ethnic breakdown of the respondents is 57.9% Malays, 26.9% Chinese, 11.7% Indians, and 3.5% others, which resemble Malaysia’s ethnic composition. The breakdown of the total respondents by age group is as follows: Slightly more than half of respondents were females (56.3%), 626 (47.8%) were 25 yr old or below, 381 (29.1%) were aged between 26 and 35 yr, 156 (11.9%) were between 36 and 45 yr, and the rest were 46 yr old and above (11%). Six hundred and eighty had tertiary education (51.9%). Almost 45% of respondents had secondary education (590) with the rest having primary education or religious or non-formal education. Seven hundred and seventy-eight (59.4%) earned MYR2000 monthly or less (about half of them were fresh graduates still searching for better jobs), and 398 (30.4%) earned between MYR2001 and 4000, with the remaining 134 (10.2%) earning above MYR4000.

The study then sought the reasons for respondents’ unwillingness to become donors, and they were allowed to choose more than one reason. Table 1 presents the results. The results indicate that most respondents, from across all income levels, cited that the prime reason why they were not willing to donate was due to doubts over their ability to lead a normal life after organ donation. The reason “I don’t think humans can live with only one kidney” scores the highest (35.6%), followed by two medical reasons, “I’m not medically fit” (23.3%) and “I’m scared of surgery/operation” (14.3%). The lowest score is recorded for “I don’t think the religious authority will allow it” (94 or 8.9%), suggesting that the respondents are somewhat sure that there are no restrictions for organ donation in their religions. Respondents who indicated willingness to donate organs if given the right financial incentive were then asked for their reasons in citing so. The findings are presented in Table 2. It appears that there is no significant difference across the income groups (p = 0.764). The results show that respondents’ decisions are influenced more by altruism and sympathy rather than monetary incentives. Among all the reasons, “I want to do something noble in life” (50.0%) and “I want to help kidney patients” (24.9%) scored the highest, while the monetary reason (6.2%) scored among the lowest. The rank of the reasons follows through across all income groups. These results are interesting because it indicates that, contrary to popular beliefs, monetary incentive is not a major reason that guides individuals’ decision to donate.

Table 1. Reasons for citing “no” to donating kidneys by level of income (n = 945)

Level of income (MYR)

Factors I’m not medically fit I’m not convinced that humans can live with only one kidney I don’t think religious authorities will allow it I’m not convinced that I will receive the financial incentives when I donate my kidney I’m scared of surgery/operation Others

2000 and below

2001–4000

4001 and above

Total n = 1052

150 222

78 113

17 40

245 (23.3%) 375 (35.6%)

47

32

15

94 (8.9%)

82

44

15

141 (13.4%)

83 26

45 14

22 7

150 (14.3%) 47 (4.5%)

Source: Authors’ database. n – refers to number; although there were only 945 respondents who replied “no” to the question on becoming kidney donors in return for government-coordinated financial incentives, the total score of the reasons given by them received 1052 times as they were allowed to choose more than one reason.

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Tumin et al. Table 2. Reasons for citing “yes” to donating organ by the level of income (n = 354) Level of income (MYR)

Factors I badly need the money I really want to help kidney patients I want to do something noble in life I just do not know why Others

2000 and below

2001–4000

4001 and above

Total n = 354

16

6

0

22 (6.2%)

53

26

9

88 (24.9%)

105

55

17

177 (50.0%)

27

18

3

48 (13.5%)

9

8

2

19 (5.4%)

Source: Authors’ database. n – refers to number; 11 persons did not respond to this question.

Discussion

The results from the Malaysian survey reveal an interesting, perhaps, surprising fact that financial incentive alone is not enough to address the shortage of organ donation. The majority of the respondents answered “no” to organ donation even when offered financial incentives and presented with scientific assurance that humans with only one kidney can live an equally healthy life as those having two kidneys. This is interesting as it means that Malaysia still has the luxury and latitude to explore new and creative ways at enticing organ donation other than resort to financial incentives. Unlike Pakistan, Iran, and Saudi Arabia, Malaysia can put the incentive option on hold and use the following two approaches: (i) raise public awareness with evidences showing that organ donation procedures and methods are safe, and living donors can live a normal life with only one kidney; and (ii) raise the effectiveness of organ donation procedures, and improve the public trust on the donation and the surgical methods required to carry out transplantations. What is glaringly lacking in Malaysia’s organ donation drive is public education. Indeed, more needs to be done in the way of public campaigns to send the message that one can enjoy similar quality of life after donation. Perhaps, the government can make use of evidence from a number of literatures which concludes that one can live with one organ and that making living donation does not compromise one’s lifestyle, except black market and vendor donation (9, 11–14). In fact, Malaysia can tap on another set of studies that look at the psychosocial of

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kidney donors in drawing up its campaign strategy. A systematic analysis of 51 studies, which examined the psychosocial health of 5139 kidney donors, found that the majority of the donors (77–95%) did not experience any depression (15). Malaysia, in fact, can draw on its examples in organ donation campaign. It can highlight the condition of Malaysia’s 1302 living donors who are living a healthy normal life with only one kidney. To help in the campaign, it can pull the help of the medical community, religious bodies, and civil society organizations. Public education also means that Malaysia should embark on a string of policies that help build trust and confidence in the state’s ability to carry out organ donation. The state needs to convince the public of its resolve in incorporating best practice procedures and regulation (16). One way to do this is to take the cue from a recent study on Malaysia’s living donors where all 80 living donors pointed out the need for the state to implement confidence-building procedures and processes relating to organ transplantation. Public education should also be on the state’s continuous incorporation of best medical practices especially in addressing ethical and safety issues. Public confidence on organ donation can be boosted if the state can come up with a comprehensive legal framework and medical oversight that keeps close to the spirit of the Declaration of Istanbul, which places safeguards on potential organ abuse. Malaysia can also come up with a competitive reimbursement policy to entice would-be donors. To date, Malaysia is among the few countries that have no reimbursement policy and free treatment for donors, unlike more developed economies such as Norway and Canada. Finally, all donors should be granted free access to secondary and tertiary care in all public hospitals including teaching hospitals. Although Malaysia does have lifetime medical benefit for donor, the policy only applies on donors who had donated their organ after November 2012. Moreover, access to such benefits is limited; currently, donors can enjoy such benefits only in hospitals under the Ministry of Health, not in hospitals under the Ministry of Education (17). To conclude, there remains a lot more room for Malaysia to explore – other than outright financial incentives – in improving organ donation and reducing the growing waiting list for organ donation. Public education remains an underutilized option for many countries, Malaysia included. An aggressive exploration of public education strategies could well provide the key to

Living kidney donation improving Malaysia’s dismal organ donation rate in which there is still zero unrelated kidney donation. Acknowledgements The authors wish to thank the University of Malaya for funding the research under the University of Malaya Research Grant Scheme 2010 (Project No.: RG 195/ 10HTM) and 2011 (Project No.: RG 283/11 HTM).

Authors’ contributions

Makmor Tumin participated in the study design, wrote the manuscript, performed the research and data analysis, and revised the manuscript; Rajah Rasiah and Abdillah Noh participated in the study design, wrote the manuscript, and revised the manuscript; NurulHuda Mohd Satar and Chin-Sieng Chong participated in the research, data analysis and revised the manuscript; Soo-Kun Lim and Kok-Peng Ng participated in the study design, data analysis and provided medical sense to the manuscript. References 1. GLOBAL OBSERVATORY ON DONATION AND TRANSPLANTATION. Final Report on Organ Donation and Transplantation: Activities, Laws and Organization in 2010 Web site. http://www.transplant-observatory.org/Pages/DataReports.aspx. Accessed May 4, 2012. 2. NATIONAL TRANSPLANT RESOURCE CENTRE. Actual Donor until July 31, 2012 Web site. http://www.agiftoflife.gov. my/statistics2.html. Accessed August 10, 2012. 3. NATIONAL TRANSPLANT REGISTRY MALAYSIA. First Report of the National Transplant Registry 2004. National Transplant Registry, Kuala Lumpur: 2005: 94. 4. NATIONAL RENAL REGISTRY. 19th Report of the Malaysian Dialysis and Transplant Registry 2011. National Renal Registry, Kuala Lumpur. 2012: 185.

5. MINISTRY OF HEALTH MALAYSIA. National Organ, Tissue, and Cell Transplantation Policy. Ministry of Health Malaysia. Kuala Lumpur: 2007: 18. 6. MINISTRY OF HEALTH MALAYSIA. Unrelated Living Organ Donation: Policy and Procedures. Ministry of Health Malaysia. Kuala Lumpur: 2011: 1. 7. BECKER GS, ELIAS JJ. Introducing incentives in the market for live and cadaveric organ donations. J Econ Perspectives 2007: 2: 3. 8. PARTICIPANTS IN THE INTERNATIONAL SUMMIT ON TRANSPLANT TOURISM AND ORGAN TRAFFICKING. The Declaration of Istanbul on organ trafficking and transplant tourism. Clin J Am Soc 2008: 3: 1227. 9. IBRAHIM HN, FOLEY R, TAN LP et al. Long-term consequences of kidney donation. N Engl J Med 2009: 360: 459. 10. DE JONG W, DRACHMAN J, GORTMAKER SL et al. Options for increasing organ donation: the potential role of financial incentives, standardized hospital procedures, and public education to promote family. Milbank Quart 1995: 73: 463. 11. BOUDVILLE N, PRASAD GV, KNOLL G et al. Meta-analysis: risk for hypertension in living kidney donors. Ann Intern Med 2006: 145: 186. 12. GARG A, MUIRHEAD N, PRASAD GK et al. Proteinuria and reduced kidney function in living kidney donors: a systematic review, meta-analysis, and meta-regression. Kidney Int 1801: 2006: 70. 13. RAMCHARAN T, MATAS AJ. Long-term (20-37 years) follow-up of living kidney donors. Am J Transplant 2002: 2: 959. 14. SOMMERER C, MORATH C, ANDRASSY J, ZEIER M. The longterm consequences of living-related or unrelated kidney donation. Nephrol Dial Transplant 2004: 19(Suppl. 4): 45. 15. CLEMENS KK, THIESSEN-PHILBROOK H, PARIKH CR et al. Psychosocial health of living kidney donors: a systematic review. Am J Transplant 2006: 6: 2965. 16. Follow-up interview conducted from July to September 2012 under a project funded by the University of Malaya Research Grant Scheme 2011 (Project No: RG283/ 11HTM). 17. MINISTRY OF HEALTH MALAYSIA. Circular (64) dlm. KKM58/900/69 Jld. 7 dated 21 November 2012.

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Living kidney donation: the importance of public education.

A sample of Malaysians in the Klang Valley indicating their decision on becoming unrelated living kidney donors was surveyed regarding huge amounts of...
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