Proposed reforms to the transplant sector in South Africa

 

The organ donation system in South Africa requires an urgent overhaul, with the steps that have been taken by the legal and medical authorities to address the problems that face this system having, as the organ collection figures so readily prove, minimal success in increasing the accessibility of transplantation in this country. The result has been an inevitable rise in the size of the waiting list for transplants with a consequent increase in the number of waiting list deaths and delays until operations are performed. This is unacceptable, for although our new legal framework does not compel our national authorities to provide organs for all potential recipients, it does nonetheless oblige them to broaden their perspectives and consider possible ways of easing the effects of this major problem. Consequently, various proposals will be offered here as to how organ supply could increase in this country.

 

The first proposal is that a change in organ procurement system be considered. Informed consent has been used in this country for many years, yet the number of organs collected on a year-on-year basis has not risen very rapidly, even though the number of hospitals conducting such procedures (and the consequent demand for organs) has increased with the recent introduction of the private sector into this area. While we can always expect organs to be lost due to factors such as refusal of family consent and the presence of undesirable medical factors, this does not mean that we cannot introduce new policies that would increase the absolute size of the potential organ donor pool. It is highly unlikely that the introduction of a presumed consent system would be favourably received in South Africa, as there seem to be too many undesirable aspects to this form of organ procurement for it to work well in local conditions. This is since technical factors, such as a poor communications system and high levels of illiteracy, mean that many people may have problems in registering their wishes on organ donation, assuming that they even find out about donation or understand the issues involved. Practically, there may also be a major public backlash against the workings of the entire transplant sector if this system is introduced, due to what may be perceived as being a lack of sensitivity to personal traditions. Here, it would not be an exaggeration to say that in this country, traditional beliefs and superstitions that run counter to the overall ethos of organ removal prevail in a large portion of the population (of all races and socio-economic classes), which would make any attempt to take organs from brain dead patients very risky.

 

Rather, mandated choice may be a better option to follow than presumed consent, with the agreement that has been struck between the Organ Donor Foundation and the Department of Transport to allow each driving license to have a space allowing for an indication of donor wishes being a commendable move. However, while the Organ Donor Foundation may receive many positive responses from drivers due to this policy, it is still too early to say how successful such consent forms are likely to be in the long run, as no data is available on how many organs were acquired from donors with these cards or what percentage of all drivers have completed them. In addition, there may be an overestimate of how many organs could be extracted, given that most national traffic deaths are related to pedestrians and passengers, not drivers (i.e. people who do not carry driving licenses). Nevertheless, these cards represent a good move, and should also possibly be considered for inclusion with the new identity cards that are being introduced into the country by the Department of Home Affairs. 

 

The one procurement system that should definitely be considered in this country is that of required request. While there are many remarks that black South Africans do not donate as many organs as their white counterparts, what nobody seems to have realised is that maybe this is possibly because blacks are not asked as often for organs as white patients are. Using the data relating to the number of referrals and actual donations provided in Table 9 provides a couple of interesting observations. While blacks make up the majority of the national population, and could thus conceivably constitute the majority of brain dead hospital patients, they do not make up the majority of the patients referred to organ procurement coordinators for consideration as organ donors. Rather, whites make up the majority of donor referrals. Now, if we wish to increase the number of black patients who are viewed for consideration as organ donors, we may have to introduce measures that increase the number of blacks in the group of donor referrals, much as affirmative action measures are used to enhance their economic status.

 

For this objective, a modified form of required request may need to be introduced. Here, instead of forcing the procurement staff to ask each and every family for the right to remove organs from their loved ones, we could instead require the staff at each hospital in this country to make an initial evaluation of the medical prospects that people have of donating organs, with all patients who meet such criteria having to be brought to the attention of the procurement services. This is very different to the situation at present, where not every potential donor is referred to the organ procurement staff for consideration. The advantage of this proposed system, which can be called a required referral system, is that it might increase the number of individuals who are seriously considered as donors without an excess amount of strain being placed on those who actually ask for organs, since an initial screening of suitability has already taken place. Even if the rate of consent is lower from black families that it is from white families, in absolute terms, the number of successful replies obtained from black donors is likely to increase if more black families are asked for organs, which obviously has a substantial impact on the number of organs collected.

 

From an economic perspective, there is not much that can be done to change the manner in which organs are to be allocated to recipients, as this is a matter that is best left to those charged with enforcing the medical criteria relating to this activity. However, it is possible to suggest that if the quantity of organs supplied increases, then there may be a relaxation of the requirements relating to entrance onto the transplant waitlists, leading to an obvious increase in realisable organ demand. This is since many patients who are currently excluded from even being considered as worthy of having an organ, due to the imposition of value judgements, finally may have a chance of receiving a transplant (such as state restrictions on the elderly having kidney transplants).

 

Unfortunately, it would be difficult for outside parties to correct some of the factors that currently inhibit organ donation amongst the South African population. For example, it would require many years and much cajoling before most people would even agree to voluntarily consider factors such as their mortality and desires regarding the disposal of their bodies after death – whether making them even consider death is a good idea is in itself a questionable topic, as it too involves a value judgement about what is right and what is wrong for people to think about. Another example is that of objections to donations using religious beliefs as the reason for such a response – even if religious bodies officially state that they have no problem with transplantation, it is up to the leadership of these bodies to inform followers of their right to donation and the desirability of doing so, not the state, which is a secular body. For some of the other factors that have been identified as impediments to donation, such as donor location and employment of organ procurement coordinators, nothing significant may be done to affect the impact that they have on the rate of organ donation, especially over the short run, although in the long-term, these factors might be improved with the provision of sufficient financial resources to tackle their main flaws. 

 

Where possible, greater consideration should be given towards using marginal donors to provide organs for transplantation. Currently, only some transplant centres in the country will consider patients who are outside their normal medical recruitment parameters as donors, which means that in large parts of the country, organs that could be obtained from individuals who do not meet normal donation standards are not even extracted, even though they could be used in recipients elsewhere where different donation criteria apply. Now, while it may be publicly impressive from a quality control point of view to state that recipients receive only the best possible organs, to recipients, who are dying, these may hardly be comforting words. Indeed, there is always a possibility that some of waitlisted candidates may be more than willing to receive organs from marginal donors that, no matter how bad they seem by outside standards, are still better than their own failing organs. The main types of marginal donors that should at least be considered here are non-heart beating donors, who already make up a fair percentage of the annual referrals to organ procurement coordinators (and who could possibly provide kidneys at least), and older donors, whose physical age may often be lower than their chronological age.

 

With respect to anencephalic infants and vegetative state patients, the less said the better, as the use of these patients may lead to more problems than any effort to use them may be worth, especially since their numbers in South Africa are quite low. Given that the death penalty is constitutionally barred in South Africa, organs extraction from executed convicts is impossible, with the option of giving prisoners who have been sentenced to life imprisonment a remission of sentence in return for a donation of a kidney also being unlikely to take place locally due to human rights concerns. As most organ substitutes, such as xenotransplants and artificial organs, are currently still under development, it would be impossible to state what would happen to the supply of normal, donated organs in South Africa if they were to eventually become available. However, it is unlikely that large numbers of these substitutes would be imported into the country due to their high costs, so human donors will most probably continue to be the most important local source of organs, with substitutes only being considered during emergencies.

 

The role of the government in the transplant sector should also be re-examined, with a view to its eventual withdrawal in all but a regulatory capacity being a possibility that would probably be of great benefit to the country as a whole. As funds are steadily being allocated to other areas where a greater priority has been assessed to exist, such as in the provision of primary health care and the combating of diseases such as HIV and tuberculosis, transplantation is unlikely to benefit from any increases that may be made in the national health budgets, with the provinces having serious problems meeting their current commitments, hence the wide-scale rationing placed on the use of transplantation related facilities such as dialysis units. To prevent further financial strain, the state sector transplant services should be consolidated. While this already happens, to some extent, with state heart and liver transplants being performed in Cape Town, the same is not so with kidneys. Instead, there are several public sector medical centres that perform this type of surgery in the country, with some provinces having more than one state transplant centre each, representing an unnecessary duplication of resources. 

 

Alternatively, the state transplant services could be privatised, with state patients being transferred onto the private sector waiting lists, whereupon they can be treated by private medical providers according to a negotiated fee. If privatisation takes place, then a single coordinating agency may need to be created in order to ensure that organs are adequately collected and allocated in the best manner possible through a single national waiting list, thereby avoiding the conflict that currently takes place between some transplant centres. In this agency, all ancillary functions relating to organ donation may be administered by it, with organisations such as the Organ Donor Foundation being given greater funding to carry out their activities than they currently receive.

 

Finally, serious consideration should be made given to allowing for a dual system of organ procurement to develop, with people being allowed to serve as both unpaid altruistic donors and paid organ sellers, regardless of whether they are dead or alive. To achieve such an objective would entail a change in the current organ donation laws, as the Human Tissues Act states that the provision of payment for all tissues and organs is not allowed, with the Director-General of the Department of Health confirming this position in recent years by stating that “organs may not be bought or sold, nor should there be any financial; incentive to find an organ for a particular patient, surgeon or institution” [1]. In this case, the law may need to be modified to accommodate the changing circumstances we find ourselves in, which is possible and justifiable due to the emergency that is currently faced by the national transplant system. While organs that are altruistically donated may be subject to one set of rules based along current guidelines, a different set of regulations can be set up in order to allow those people who wish to buy and sell organs to do so. Indeed, there is a local precedent for organ purchases, for in past years, corneas that had been voluntarily donated in the USA were imported into this country at a cost of R7,500 per cornea [2]. Thus, it would be hypocritical of the authorities to argue that organ selling would be unethical if they had personally engaged in such activities overseas, at a price that was substantially greater than the local price would conceivably be.

 

In South Africa, there is, at present, an untapped market for organs, with there being people who are willing to sell their organs to another person in return for some form of monetary benefit and, quite possibly, individuals who would be wish to purchase these organs. This can be seen by the fact that at different times, in both Kwazulu-Natal [3] and in Gauteng [4], individuals have offered to sell a kidney for transplantation, with a possible buyer allegedly expressing interest in purchasing an organ in one of these cases, thus demonstrating that demand also exists. 

 

While the price asked by the hopeful sellers for a kidney, which was generally set at the R50,000 range, may seem low to some critics of paid organ donation, who would probably not wish to part with one of their kidneys for anything less substantial than R500,000, to poor people, this sum of money may seem like a fortune that is greater than they may otherwise see in their lives. Here, it should be noted that the per capita income in South Africa is about R18,000 per annum, with several million unemployed people living with less than R1,000 per month. Even if these people could manage to find employment, their low skills levels could mean that they would only be able to enter sectors such as the mining, security and construction industries, where, in return for meagre wages, they would have to face immense risks of personal injury or death. Thus, if they were to make a calculated assessment of the relevant risks of dying from renal damage versus the reward of an immediate payment that approximates almost 3 times the annual national income for what appears to be a very quick bit of work, they may rationalise that selling an organ could secure them a better lease of life than any other opportunity they have. With the money they receive, they could eliminate their debts or start a new business that would provide them with a new direction in life [5].

 

Even if a market using direct forms of trade and compensation between parties does not develop, then alternative methods of compensating patients for the acquisition of organs may be worth examining. As South Africa is characterised by a high degree of income inequality, a large portion of the disapproval that may be expressed over organ selling may be because the poor are unable to afford the prices required by organ sellers and might thus be discriminated against in a publicly unacceptable manner. To overcome this problem, the use of the tied purchase option that was mentioned in the previous section may eliminate some of the doubts that exist, by ensuring that a person can only purchase an organ if another organ can be provided to someone else who is deemed less fortunate on the waiting list as well. Alternatively, the provision of indirect financial incentives can be used, with the provision of a funeral benefit having prospects of being seen as a particularly good way of helping the family in saying farewell to a loved one, while in the case of living donors, the range of indirect payment options that were previously covered can all be considered for use.

 

If all ways of contracting with organ sellers are prohibited, then alternative methods of utilising financial incentives could be introduced, even though these are likely to be less efficient than direct trades. For the year ended 31 March 1998, the Organ Donor Foundation spent almost R500,000 on fulfilling its mandate of informing the South African public about organ donation, which amounted to 10 cents for each person in the Republic, which is definitely an insufficient budget. During this period, around 300 organs of all types were transplanted, which means that it cost about R1,500 to “acquire” an organ through the publicity efforts of the Organ Donor Foundation, even though it played only a marginal role in the actual procurement of the respective organ. Now, one possibility to increase the donation of organs could be to ensure that for each organ that is transplanted, the recipient could pay a nominal sum, say R250, that could be used by the Organ Donor Foundation solely for its publicity campaigns. With such an incentive, staff at this organisation would have less of a need to devote their attention to raising funds for their work and could rather concentrate on directly promoting the concept of organ donation. As money is being ploughed into the Foundation, it is possible that the public awareness of this topic could increase as their would be a great budget for publicity, leading hopefully to an increased willingness to donate organs.

 

An alternative approach would be to provide financial incentives to the medical units that initially refer possible donors to organ procurement coordinators, with this system being especially useful if a system of required referral was in place. Here, a set amount, say R100, would be paid over to a medical centre for each patient referred to the procurement staff that meet predefined referral criteria, with an additional payment being provided to the centre for each one of their referrals that leads to actual organ removal. The value of this system is that it would provide the staff at medical centres with a motive to identify patients that could be organ donors and inform transplant teams of such news. As in the previous case, a procurement charge could be levied on organ recipients to only cover the charges associated with providing incentives to the medical centres, which thus ensures that no third parties make a profit out of this part of organ procurement.

 

One issue that may arise if organ sales become successful is that foreigners could be tempted to come to South Africa as organ tourists in order to receive a transplant here that they are unable to receive at home. Under current rules, they would not be able to receive an organ in this country because of an official ruling stating that all cadaver organs donated in this country are to be treated like a natural resource for use in South African citizens and permanent residents only [6]. This measure is so strictly applied that in spite of the political discussions on regional integration and co-operation, even patients from neighbouring SADC countries have, in recent years, been prevented from coming to this country to receive a transplant of local organ, except when Ministerial approval is granted (although this does not stop local authorities from attempting to procure cadaveric organs from foreign nationals). If organ selling proves to be successful and something approaching an organ surplus is generated, then a relaxation of these allocation rules may be warranted, with patients from neighbouring states being allowed into the country for a transplant on condition that their home countries also allow for organ sales to take place, which would substantially increase the size of the possible donor pool. For foreign patients from developed states, a slightly different set of rules may need to be used, with one option of dealing with such customers being to force them to pay an additional surcharge for any organs that they have transplanted locally, with the funds collected being used to buy several organs for local recipients or pay for their immunosuppression. Here though, it should be clearly noted that the primary purpose of allowing organ trade in South Africa should serve not as a means of allowing foreigners to benefit from the grafting of local organs, no matter what benefits can be gained from trade, but rather to ease the present shortage in this country and help national patients. 

 

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