Organ transplantation in South Africa

 

While organ transplantation in South Africa is often associated with the first heart transplant performed in 1967 by Chris Barnard, this form of medical intervention was initiated in South Africa in 1966, when, with the assistance of Thomas Starzl, the first renal transplant was performed at the Medical School, University of the Witwatersrand [1]. Regardless of public misconceptions on this matter, since these early transplants, the structure and sophistication of the national transplant system has gradually evolved, with increasing numbers and types of solid organs and tissues being transplanted throughout the country.

 

As clinical proficiency was being established, the specific infrastructure required for the proper maintenance and operation of a national transplant system was slowly being implemented, with such expansion going far beyond the mere training of medical staff and erection of dedicated clinical facilities. In the early 1980s, the first full-time organ procurement coordinators (OPCs) were deployed to request permission from families for the removal of organs from dead relatives - prior to this, doctors and other individuals who did not always have the appropriate training for this task were normally involved in the acquisition of organs. At around the same time, the Human Tissue Act 65 of 1983 was introduced to replace previous legislation that governed the handling of all components of the human body, with upgraded regulations being brought into effect to account for the new realities resulting from the improved clinical success of transplantation in the cyclosporine era. This was followed in 1988 by the establishment of the Organ Donor Foundation of South Africa, a NGO established primarily to increase public awareness of organ donation and to stimulate the number of organs collected for transplantation [2]. In this task, the Foundation is best known for distributing the organ donor cards that serve as an initial signal of intention to donate organs, although it is also involved in the dissemination of information to the medical fraternity and general public through various media formats, either as special events or via more general public lecturing programmes.

  

In South Africa, organs are collected according to the general system of informed consent, albeit with modifications designed to suit local conditions. With living donation, donors are restricted to direct relatives of potential recipients, with the only non-related living donors that are normally considered under the current system being the spouses of patients. With cadaveric donation, brain stem death must be declared by two certified medical professionals and the provisions stipulated in terms of the Human Tissue Act must be met before attempts can be made to acquire organs. Here, the family are always consulted before organ removal is undertaken, as they have the right to veto a person’s choice to engage in organ donation, even if a donor card had previously been completed. While these cards could be viewed as legally binding documents in a court of law, this process of seeking family consent is performed as a safeguard to ensure that no public damage that could harm the overall integrity of and support for the national transplant programme is caused.

 

Once consent is granted and organs are removed from a cadaver, they are then offered to those hospitals that might be able to make use of them, with hospitals that specialise in the transplanting of particular organs being immediately offered organs that only they are equipped to handle. With hearts, surgery has traditionally been centralised at the state-run Groote Schuur hospital, but since the mid-1990s, heart transplants have also been performed at private clinics, run mainly by the Netcare Group, in the Western Cape, Gauteng and Kwazulu-Natal. Lung transplants are performed exclusively at a couple of private hospitals in the main urban locations while liver transplants, although occasionally carried out at the Pretoria Academic hospital, are usually performed at Groote Schuur. Almost 20 hospitals nationwide have the ability to perform kidney transplants, with these organs being distributed between participating hospitals in different ways depending on province. In Gauteng, for example, where a good working relationship between private and public hospitals exist, kidneys are usually split on an even, one-to-one basis between the state and private hospitals irrespective of where they were extracted, but in areas where a less amicable relationship exists, hospitals may have a greater incentive to retain both collected kidneys for internal use. With respect to tissues such as skin and bone, these are usually sent to specialised national facilities for handling or, in the case of corneas, to the applicable regional eye banks for grafting.

 

The allocation of organs to patients on the waiting lists will depend on the centre and type of organ concerned, for even though internationally accepted best-practise rules are followed, no uniform rationing policies are applied nationally. For example, while most local centres will allocate kidneys primarily on the basis of an antigen match, some centres will also pay slight consideration to other factors, such as length of waiting time, when deciding which potential recipient should receive a kidney. Meanwhile, with hearts and livers, physical compatibility is a crucial criterion in transplant eligibility, with recipients having to be in about the same age and body size range as the people whose organs they are about to receive. Generally, children receive no priority over adults when it comes to the allocation of a particular organ, since it is felt that over their probable lifetime, these younger recipients can expect to receive multiple organs that will eventually fail in most cases as their immune systems become pre-sensitised to foreign antigens. In addition, no distinction is made on the basis of race or any other demographic characteristic in deciding which patients on the waiting list qualify for a transplant – while whites generally received most of the organs given in past decades, this was more to do with the fact that they constituted the bulk of the recipient pool than with any overt display of racial favouritism [3].

 

While no official records are available of the characteristics of cadaveric organ donors from across South Africa, a reasonably good impression of their key features can be gathered from a comprehensive examination of the details relating to patients serving as donors in the Johannesburg region. Here, Table 10 details the demographic characteristics of all patients who were initially referred to the organ procurement coordinators for possible consideration as donors, and who were eventually used as such, in 1995 and 2000 [4].

 

 Table 10: South African organ donor characteristics [5]

A) Donor referrals Year Total Male Female White Black Coloured Asian 1995 78 44 (65%) 24 (35%) 41 (60%) 19 (28%) 6 (9%) 2 (3%) 2000 93 63 (68%) 30 (32%) 67 (72%) 17 (18%) 5 (5%) 4 (5%) B) Actual donors Year Total Male Female White Black Coloured Asian 1995 30 17 (57%) 13 (43%) 23 (77%) 2(7%) 4 (13%) 1 (3%) 2000 34 28 (82%) 6 (18%) 26 (76%) 4 (12%) 1 (3%) 3 (9%)  C) Donation success rate [6 ] Year Total Male Female White Black Coloured Asian 1995 44% 39% 54% 58% 10% 67% 50% 2000 37% 44% 20% 38% 25% 20% 75%

 

For both 1995 and 2000, the proportion of male and female patients referred to organ procurement coordinators was similar, with about two-thirds being male and one-third female. The greater proportion of male referrals is due mainly to the fact that they are more likely to be involved in activities where the integrity of their cerebral systems is compromised, such as being victims of acts of violence or partaking in high-risk activities, such as travelling at high speeds without suitable protection. In racial terms, whites make up the majority of donor referrals, with their representation here increasing from 60% of all patients referred to the organ procurement co-ordinators in 1995 to 72% in 2000. This rise was achieved mainly as a result of a decline in the applicable proportion of black referrals to the organ procurement co-ordinators, from almost 30% in 1995 to about 20% in 2000, with coloured and Asian patients making up the remaining portion of referrals. Not all of these referred patients ended up giving organs though, with the number of actual donors being substantially lower than the number of potential donors. While the number of actual donors was about evenly split on gender lines in 1995, in 2000, males constituted a clear majority of the cadaver donor pool, with 82% of donors being male against 18% for females. Racially, whites made up three-quarters of the actual donor pool in both periods, with non-whites constituting the remainder of the donor pool, with the total number of donors in both periods under review being essentially unchanged [7].

 

One approach to calculate the efficiency of an organ procurement organisation (OPO) is to determine “the percentage of potential donors who become actual donors" [8]. In 1995, there were 30 actual donors out of 78 referrals, signifying an overall procurement success rate of 44%, while in 2000, this rate had fallen to 37%, with 93 referrals leading to 34 solid organ donations. Although this figure appears low, it is roughly in line with the results obtained in the USA, where different OPOs had success rates of 37-59% from referrals after accounting for differences in donor suitability [9]. While organ removal was achieved for about 40% of all males in both periods, the success rate in organ removal from females showed a major drop, with the donation rate falling from 54% in 1995 to only 20% in 2000. Meanwhile, the success rate of organ collection from whites approached by OPCs decreased significantly in 5 years (from 58% to 38%), while the corresponding rate for blacks increased from 10% in 1995 (2 donations out of 19 referrals) to 25% in 2000 (representing organ removals from 4 out of 17 referred patients). For Asian and coloured donors, no inference with respect to the success rate of organ collection can be arrived at with much confidence due to the very low number of patients involved during both periods.

 

Various factors play a role in causing this substantial difference between actual and potential donors. Obviously, a lack of family consent to organ donation is a major obstacle, with personal, cultural and religious reasons being possible factors behind refusals to donate, which is to be expected given the cosmopolitan nature of this country [10]. At other times, only restricted consent may be granted, in which case only specified organs, such as kidneys, are removed, with removal of other body parts that have a symbolic meaning, such as the corneas ("the windows to the soul") and heart ("the home of the soul"), being prohibited. Alternatively, consent may be denied entirely or partially restricted if the family want organs to be donated to only certain categories of recipient, such as patients of a particular racial group or child recipients. This particular type of restriction has proven to be a controversial issue elsewhere, with one British politician proclaiming: “to attach any condition to a donation is unacceptable because it offends against the fundamental principle that organs are donated altruistically, and should go to patients in the greatest need" [11]. In such circumstances, what may happen is that the family will be informed that while an attempt will be made to find suitable recipients meeting their requirements, no guarantee of fulfilling such a request can be given, with such an assurance sometimes being enough to result in consent being granted.

 

Failure to meet medical requirements is also a major factor in the lack of cadaveric organ removal, with non-heart beating patients and others who cannot be certified as having brain stem death being referred to organ procurement coordinators even though they will always be turned down as donors [12]. In cases where the family consents to donation, removal of organs may still not be performed if outside restrictions are imposed on such an activity. In South Africa, all people who die of unnatural causes must be examined by a state pathologist to determine the full nature of their deaths, which might occasionally result in a veto being imposed by these authorities if they wish to investigate a particular death more intensively - once the body is released, very little use can be made of the organs therein. Organs are also not removed if they have significant noticeable defects and infections, such as poor general function brought about by disease and physical damage. While it has been noted that “HIV and viral hepatitis pose significant limitations to the future of transplantation in this country” [13], very few cases exist of referred patients being passed up for donation due to the presence of these two main diseases (or other transmissible diseases such as CMV). To a large extent, this is because infected patients are filtered out beforehand by the medical units that make the referrals to the procurement staff, since these institutions are often able to find out about a patient’s medical profile when they are admitted, either through interviews or via general diagnostic testing.

 

As Table 11 shows, a general analysis has also been performed to determine the underlying cause of death of actual organ donors. While the figures under investigation relate to individuals in Johannesburg only and may thus not reflect the situation that elsewhere, they nonetheless provide a useful guide to donor death (as well as an indirect commentary on the nature of South African society). While victims of traffic accidents provided about 20% of cadaveric organ donors in 1995, by 2000 they made up almost half of the donor pool, with victims of assaults, usually caused by firearms, also providing relatively more donors in 2000 than they did in 1995 (20% versus 10% respectively). In contrast, a significant decrease was registered in the number of self-inflicted deaths leading to organ donation – while these deaths are mainly suicides caused by gunshot injuries to the head, they also cover a small number of cases of negligent firearm handling, as may occur via accidents at home or through playing Russian Roulette. Finally, the remaining one-third of donors had either died of medical conditions such as cerebral haemorrhaging or through miscellaneous accidents, such as drowning, falling or having a head injury.

 

Table 11 Organ donor causes of death [14]

Year	Total	Traffic accidents	Assault	Self-inflicted death	Medical factors	Other
1995	30	6 (20%)	3 (10%)	12 (40%)	6 (20%)	3 (10%)
2000	34	15 (44%)	7 (20%)	3 (8%)	4 (12%)	5 (15%)

  

In Table 12, a summary of annual statistics relating to solid organ transplantation in South Africa from 1991 to 2000, as compiled by the Organ Donor Foundation, is provided [15]. From the data provided, we can see that over the past decade, the number of transplants performed has risen at a slow rate, with almost all the transplants performed involving hearts or kidneys. This is more or less in line with the unofficial national policy of specialising in the transplantation of these particular organs, with other organ types having a lower priority amongst transplant teams. If we go back to Table 9 though, then it becomes apparent that by world standards, the number of organ transplants in South Africa per million population is relatively low, with most states collecting far more organs than this country regardless of the system that they employ. Thus, it is clear that the local organ donation system is far from efficient, with this country failing greatly in its efforts to increase organ supply as can be seen by both the local year-on-year procurement rates and in the international cross country evaluation.

 

Table 12 Organ transplants in South Africa (1991-2000) [16]

Year	Heart	Heart-Lung	Lung	Liver	Kidney	Total
1991	27	0	0	7	248	282
1992	33	0	0	8	241	282
1993	35	0	1	17	313	366
1994	37	0	0	15	316	368
1995	47	4	0	14	339	404
1996	46	2	0	10	308	366
1997	36	1	0	10	286	333
1998	47	0	4	8	284	343
1999	37	1	8	4	319	369
2000	41	0	2	12	359	414

 

Although there are significant differences in the year-on-year figures, the number of heart transplants performed has been growing at a steady rate, with the overall quantity in 2000 being about 50% greater than the equivalent value for 1991, although it is still substantially off the peak figure achieved in 1995. Here, the private hospitals have succeeded in capturing a large share of the market even though they only entered this field in the mid-1990s. To all intents and purposes, the number of heart-lung and lung transplants has remained static in the period under observation, although it must be conceded that the programmes that have been established to deal with lungs have only been running for a few years. Meanwhile, although the number of liver transplants has fluctuated over the years, the average number of such operations performed has remained at a general level of about a dozen transplants per annum (which is nonetheless substantially lower than the peak numbers achieved in the early 1990s).

 

By far the most common type of organ to be transplanted in South Africa is the kidney. While kidney transplants are performed throughout the country, the key centres are Cape Town and Johannesburg, with Groote Schuur hospital being the location where the most operations of this type are performed. In 2000, where a breakdown of donor sources was made available for the first time, we are able to ascertain that of the 359 kidneys transplanted throughout the country, 251 were obtained from cadavers, 99 were provided by related living donors, and 9 came from non-related living donors. For a country where legal restrictions suggest that only brain dead donors should be seen as a dependable source of organs, this is a remarkable figure, as it means that about one-third of kidneys were obtained from living donors, with the norm in most countries being a much lower ratio of living to dead donors unless there are significant difficulties in obtaining sufficient organs from conventional cadaveric sources.

 

In addition, a wide range of tissues, including corneas, skin, bones, bone marrow and heart valves have been acquired and transplanted [17]. Here, the most common type of tissue to be grafted is the cornea, with doctors being able to remove this tissue at much greater leisure from a larger pool of dead people than is possible with solid organs. In 1999, 686 corneas were grafted, with the quantity jumping substantially in 2000 to stand at 854 grafts carried out at the various eye banks around the country. By comparison, far fewer transplants of other tissues have taken place, with the number of bone marrow transplants, for example, which always involve living donors, standing at fewer than 300 operations in a period spanning over 20 years [18].

 

As no multi-centre data pertaining to waiting list numbers has been compiled in South Africa, no equivalent 10 year figures can be provided of organ demand to correspond with the data concerning organ supply. The most that can be achieved is shown in Table 13, where details are provided of the number of potential organ recipients at the start of 2000 and 2001 only [19]. At the start of 2000, the total number of solid organs required in South Africa numbered 963 organs, while 1,052 organs were required in 2001, signifying an increase in demand of 89 organs, or 9% of the total, in one year [20]. What is not revealed here is that far more South Africans could benefit from transplantation than are reflected by the official numbers on the waiting lists, in which case, there is a vast unexpressed national demand for organs as well. For example, one estimate holds that up to 5,000 South Africans could potentially benefit from a solid organ transplant [21], while as many as 20,000 individuals who are currently blind could benefit from having a corneal graft [22]. 

 

Table 13 Waiting list numbers for all organ types in South Africa at start of year [23]

Year	Heart	Heart-Lung	Lung	Liver	Kidney	Total
State sector 2000	22	0	0	18	743	783
Private sector 2000	-	-	-	-	-	180
State sector 2001	15	0	0	35	744	794
Private sector 2001	21	6	8	0	223	258

  

While statistics relating to the amount of time that potential recipients have to wait before they can finally receive an organ from a cadaver are not officially recorded, a rough estimate of patient waiting times can nonetheless be gained by a simple calculation using available data. Here, the expected waiting time of a random patient for a particular organ is derived by dividing the number of patients on a waiting list at the start of a year by the number of transplants performed for that particular organ in the previous year, with the data being segregated to account for whether patients are on the state or private sector waiting lists. The results, provided in Table 14, show that between 2000 and 2001, while the expected waiting time for heart and liver transplants in the state sector fell substantially, the opposite effect occurred with kidneys, where renal patients were expected to wait for literally one extra year before a suitable organ was made available. Meanwhile, a cross-section comparison demonstrates that in 2001, for hearts and kidneys, patients in state hospitals would wait about 75% longer for a transplant than their counterparts on the private sector waiting lists. Possible explanations for this major time difference could be that private sector hospitals had relatively fewer patients in their waiting lists or else were less willing to engage in transplants for certain types of patient that state hospitals would agree to undertake.

 

Table 14 Expected waiting time before receiving a cadaveric organ transplant (in days)

Organ	State sector (2000)	State sector (2001)	Private sector (2001)
Heart	[22/8] = 1,004	[15/12] = 456	[21/29] = 264
Heart-Lung	[0/0] = N.A.	[0/0] = N.A.	[6/0] = indefinite
Lung	[0/0] = N.A.	[0/0] = N.A.	[8/2] = 1,460
Liver	[18/4] = 1,643	[35/12] = 1,064	[0/0] = N.A.
Kidney	[743/224] = 1,211	[744/163] = 1,666	[223/88] = 925

 

Of course, the times that have been calculated are generalised results, with individual patients having substantially different waiting times for a transplant – while some may be lucky to receive a new organ within a few weeks of listing due to a good antigen or physical match, others may have to wait for substantially longer than the average time indicated before a transplant is performed on them. Location is also of importance, with patients waiting far longer for an organ in some areas than they do in others, with the best places (sometimes the only places) to receive an organ being Johannesburg and Cape Town. Nonetheless, these high waiting periods are obviously undesirable, as patients face greater pain and medical complications, as well as an increased risk of mortality, as their period of waiting on these lists increases. Although no records are kept of the number of patients who actually die while waiting for an organ in South Africa, it has been estimated that one-third of heart and liver candidates will die before an organ is made available to them [24]. For kidney patients, the corresponding proportion is lower, as they can wait far longer for a transplant since they can receive ongoing therapy via dialysis or, where possible, a kidney from a living donor. However, as there are many more patients with ESRD, the aggregate number of kidney deaths is much greater, with one estimate holding that the number of ESRD patients sent home to die due to a lack of transplantable kidneys stands at about 10 individuals per week [25]. Therefore, if we add the number of waitlisted patients for different organs who die before receiving a transplant, it would be reasonable to surmise that several hundred people could expect to die per annum in South Africa due to the organ shortage that exists (with many more people not even being considered if they do not make it to the transplant waiting lists).

 

Several issues relating to transplantation in South Africa are worth discussing. The first concern relates to the manner in which the role of government, through the Department of Health, has changed over the past decade. With the change of government in 1994, the objectives of the national health strategy shifted from a system of secondary care, based on a capital and labour intensive medical infrastructure, towards a primary service model, where the emphasis was on the widespread provision of basic services and prevention of common ailments. This change has major implications for the transplant sector, which, along with associated services such as renal dialysis units, consume vast resources relative to the number of patients treated due to its high-tech nature [26]. As the priorities of the state have slowly changed, individuals in this sector have had to lobby with increasing difficulty to maintain sufficient public funding to carry out their work, although they have been fortunate that the private sector has been allowed to operate in this sector at about the same time that the state was scaling back on its activities. Despite this, the state continues to act in a manner that belies its decreased importance in this sector, and may thus be an unwelcome presence here, given its ability to play a dominant role through its coercive ability to unilaterally impose policies on all relevant parties.

 

The conflict between the intention of the state to play a role in the transplant sector and its ability to do so is clearly demonstrated by the debate surrounding the granting of access to renal dialysis and transplants to state patients. While the guidelines issued by the Department of Health proclaim that “all South African citizens and permanent residents must have equitable access to chronic renal dialysis in the public sector” [27], it concedes nonetheless that meeting such a goal is beyond its own abilities, stating that “it will not be possible, within the foreseeable future, for chronic renal dialysis patients to be provided for all patients who could potentially benefit from this treatment” [28]. Rather, the state has worked to limit access to dialysis by declaring that in the public sector, “the main criterion for chronic dialysis is suitability for a renal transplant” (original emphasis) [29] – patients who attempt to by-pass this restriction by first enrolling at a private dialysis unit with the hope of then transferring to a similar facility in the public sector are prevented from doing so by being forced to remain the responsibility of the private doctors or hospitals that initially accepted them. To medical practitioners in the state sector, this type of restriction can be ethically disturbing, as it prevents them from acting in the best interests of their patients, with the possibility existing that some patients might be enrolled by doctors in dialysis units even though it is believed that they have little hope of actually receiving a transplant [30]. A few years ago, this restriction was challenged by a plaintiff with ESRD who could not get entry to state dialysis unit, with the Constitutional Court eventually ruling that this restriction was acceptable given the lack of resources in the public sector, even if many patients who could benefit from dialysis were to die from organ failure induced diseases or infections (as happened to the plaintiff).

 

There are also other signs that the state is unable to play a meaningful role in transplantation (or simply does not wish to do so). Here, the state has, in recent years, been successfully free-riding on the private sector, with state hospitals being able to get many of their organs thanks to the efforts taken by private agencies to acquire them without ever compensating them for their work. For example, while the state does not provide the Organ Donor Foundation with any funding, it benefits nonetheless from the increased public awareness created by this body about the benefits of transplantation. In addition, the state benefits when organs that have been retrieved from donors in one area are flown to hospitals in other areas where they can then be transplanted. While these organs are sometimes flown on corporate jets whose services have been sponsored by firms such as Richemont and SAA, this is not always attainable, in which case an airplane must be privately chartered to move the retrieved organs, at a cost of about R20,000 per flight. Here, transplanting hospitals, in both the state and private sectors, do not cover these costs, which must be borne privately by the Organ Donor Foundation even though it can ill-afford to bear such expenses [31]. The state also benefits through the services and supporting infrastructure provided by the organ procurement coordinators who, even though formally employed in the private sector (by Netcare), collect organs from patients in the state sector as well, given the lack of such suitably qualified individuals there, with no charges being levied on the state for the provision of these essential services.

 

A second major issue relates to the racial composition of the organ donor pool, which is, as the figures in Table 10 demonstrate, not representative of the composition of the South African population as a whole. As the majority of the people in this country are non-white, their low organ donation rates, relative to the white minority, serves as a substantial obstacle to the expansion of transplantation in the country, with any efforts to increase the donor pool having to concentrate on increasing the number of non-white organ donors. While efforts to increase the number of black donors have been implemented, they have so far not been very encouraging, with appeals for altruism having very little value in the face of traditional cultural opposition to organ removal. Here, a double-standard seems to be in effect, for although non-whites make up the minority of organ donors, they make up a rising proportion of recipients. Therefore, if altruism fails at increasing the number of organs collected, alternative policies may need to be considered to ensure that the number of black donors increases.

 

Finally, as with blood donation, there are major concerns about the prevalence of infectious diseases in South Africa, with almost 5 million HIV carriers and about 2 million people with HBV living at present in this country. The problem here is not that people with these diseases could actually infect recipients, as they are likely to be discovered through medical testing before even being referred to the organ procurement coordinators, but that they cannot be considered as organ donors in the first place, which thus has a negative impact on the size of the organ donor pool. Once again, alternative measures may need to be implemented if healthy donors are no longer available due to the ravages of disease, although here, the value of altruism has never been an issue since even if these people wanted to donate organs, they would not be allowed to do so.

 

We now end our discussion of the problems faced by transplant systems when it comes to the collection and allocation of organs. As was seen, the common problem worldwide is a lack of available organs, with various approaches being used to overcome the shortages that exist and thereby alleviate the mass suffering brought about by the large number of deaths suffered while awaiting a transplant. While some of these methods have been denounced as being unethical and contrary to the spirit of altruism, they have nonetheless been adopted, with the fact that patients from countries where altruistic systems prevail have, in their desperation, travelled to areas where unorthodox ways of acquiring organs are used serving as both a sign of the failures that exist with altruistic donation as well as of the successes that can be achieved with market based solutions in acquiring organs. In the following sections, we examine ways in which organs can be provided to recipients through market-oriented channels, where the emphasis on provision is based on the concept of self-interest rather than communal interest.

 

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