HIV Patients' Rights to Kidney Transplants and Medical Tourism

Introduction: HIV/AIDS, Organ Shortage, and the Case for Equal Access

Poor socio-economic conditions combined with the HIV/AIDS crisis can only produce further socio-economic and political upheaval, the regression of development, and the collapse of societies — beginning with families and communities and extending into broader economic and social systems. As one analysis of medical decision-making notes, "one can rank the importance of quality of care and seriousness of condition for the insured and uninsured, respectively. The quality of care clearly matters differently for the various levels of seriousness. Excellent care evidently matters more for self-selected medical tourism than for government-sponsored medical tourism" (Medical Tourism: Outsourcing Surgery). Therefore, the outsourcing of expensive medical care — mainly costly surgeries — to Asian countries can be achieved by promoting medical tourism as a means of overcoming escalating healthcare costs and long waiting periods for underinsured and uninsured Americans.

The disease has reached pandemic proportions worldwide, based on the immense devastation it has caused. In 2006 alone, HIV/AIDS-associated illnesses caused the deaths of approximately 3 million people worldwide, including a reported 500,000 children younger than 15 years (NIAID online; Bennett and Whiteside, 2002). However, the situation is not entirely bleak. Effective and decisive leadership in developed countries, and in Uganda as a ray of hope for the developing world, has illustrated that the disease can be contained. While containment through preventive strategies and modern treatment technologies may offer possible solutions, the reality is that in many countries — from Eastern Europe to Asia and Africa — the disease continues to spread. In regions such as Sub-Saharan Africa, HIV/AIDS spreads so rapidly and so devastatingly that, setting aside human pain and suffering, it threatens not merely to disrupt but to fundamentally alter and regress the region in terms of human development. This context also highlights the fact that kidney transplantation is often prioritized through a location-based criterion, where patients are selected partly on the basis of where they live (Bennett and Whiteside, 2002).

Organ transplants can vastly improve patients' quality of life and benefit their families and society in general by restoring an ill and dependent individual to health. On a cost-benefit basis, transplants prove ultimately cheaper than long-term dialysis by an average of $350,000 per patient. However, there are fewer donors than there are needy patients — a situation that should not persist, given that the percentage of people willing to donate lies in the 70s. This gap further undermines the prospects of those suffering from HIV. Actual donation rates, however, languish in the 20s. It has been argued that this disparity is due to a misdirected and incoherent legal structure. To increase the number of organs available for transplantation, a presumed consent system should be implemented to close the gap between willing and actual donations. Combined with improved coordination, this would ameliorate the severe shortage (Williams, 1999). Such a system is both ethically and morally justified. Other options — such as increased investment in coordination without changing the default position of deference to relatives, or alternatives such as partial transplantations — are problematic both ethically and practically, such that even if the law formally ensured that all who need organs receive them, certain approaches would remain normatively wrong (Neyhart).

The sheer lack of organs — and kidney organs in particular — in circulation is a critical problem. The poor supply of donor organs does not meet the ever-increasing demand. Compounding this are the illegal and unethical procurement of organs from developing countries and the enormous costs incurred from caring for people on the waiting list. The evidence strongly suggests that all these problems stem from an insufficient rate of kidney organ donation and the stigma attached to HIV itself. This raises a pressing question: why are compassionate members of society not cooperating and donating?

First, there is a significant lack of awareness regarding how to go about organ donation (Neyhart, 2007). The general public remains largely ignorant of the benefits of organ donation and the methods by which to donate. Patients with Human Immunodeficiency Disease should have equal access to kidney transplantation. Denying them this access constitutes discrimination — which is both morally indefensible and, in many jurisdictions, illegal. A life is a life, and if an HIV patient needs a kidney, he or she should receive one regardless of others' discomfort. The facts speak for themselves: each day, 120 people are added to the ever-growing organ waiting list, and kidneys are critically short in supply. An astonishing 41% of those on the waiting list — approximately 50 people per day — will die due to the lack of donor organs in circulation. This translates to approximately 18,000 deaths per year. Many of these deaths involve HIV patients who could not obtain a kidney transplant (Goss and Adam-Smith, 2006).

The Organ Donation Crisis: Supply, Demand, and Economic Consequences

This inequality between supply and demand has led to illegal practices and the unethical procurement of organs from poorer countries, occurring in two main ways (Goss and Adam-Smith, 2006):

— Illegal organ trafficking from poorer countries in the East to the West.
— Increasing medical tourism, where wealthy individuals travel to other countries to find a donor.

In such cases, one cannot always be certain whether donor organs have been legally obtained or whether donors have been coerced through blackmail or financial desperation. Is it right that poorer people should be compelled to sell their bodies as a direct result of dire social circumstances? And what of those who cannot receive the organs they so desperately need? People with kidney failure must rely on dialysis machines and are forced to lead very limited and unfulfilling lives (Neyhart, 2007). Kidney dialysis also imposes enormous costs on the healthcare system, as machines require constant maintenance and replacement.

The added economic burden is severe. Patients on dialysis are frequently unable to work and therefore cannot pay taxes, creating a double blow to the economy. Kidney dialysis alone costs an estimated $200 million per year from the taxpayers' pocket. The total cost of caring for people on the organ waiting list is believed to be approximately five times that amount — $1 billion per annum (WHO, 2003). Enough, it has been noted, to feed the entire population of Ethiopia for a year.

The terms of the relevant law must be subject to critique, because healthcare workers must ultimately operate within existing common law and legislation, even as they seek to save patients from an avoidable early death. The definition of death is itself problematic. Today, the concept of brain death has been adopted by most Western countries. Some scholars suggest, however, that when the capacity for sentience is irrevocably absent, the minimum criteria for personhood no longer exist, despite the presence of a functioning brain stem. Perhaps it is best to acknowledge that it is impossible to define the moment of death with any certainty or precision, and that the more important task is to determine at what point in the dying process organ retrieval becomes legitimate (Williams, 1999).

Legal Framework and the Definition of Death in Organ Retrieval

The law specifies that a doctor must be satisfied that life is extinct before organ retrieval may take place, but there is no statutory definition of death, leaving that to a matter of clinical judgment. Standard practice requires two independent doctors to perform two sets of tests to determine brain stem death.

The law is somewhat outdated and prevents the facilitation of a successful donation program. The current system attempts to accommodate all possible scenarios. An opt-in system provides a framework, but there is no clear definition of who the person "lawfully in possession of the body" is, and a verbal intention to donate is only legally valid when it is made during the course of the last illness (Day and Klein, 1989). Furthermore, even if a patient is a willing donor, there is no legislative obligation to establish a lack of objection on the part of relatives. In practice, however, any objections raised by relatives are given priority over the donor's wishes.

This creates what appears to be a discriminatory and weak system. Under the existing opt-out scheme, which applies only where the deceased has left no recorded expression of their wishes, the person lawfully in possession of the body is authorized to remove organs for transplantation if reasonable enquiry shows that neither the deceased nor any surviving spouse or relative objected. Although it is understandable why spouses are invited to express their views, this does not reflect the reality in which many adults now live — where cohabitees or long-term partners fulfill this role but may not be legally recognized (Williams, 1999).

More practical considerations also apply. First, there is a need for sophisticated infrastructure to maintain an opt-out register that does not discriminate against HIV patients. This challenge, however, belongs to a previous era. Today, only Internet access and a computer are necessary, making an opt-out register no more difficult to maintain than an opt-in register. If 70% of the population is truly willing to donate, it is in fact more efficient to maintain a shorter list of the 30% who do not wish to donate. Second, there is concern about adverse publicity if organs are taken over relatives' objections — but as argued, relatives' views can still be considered, and public education could persuade the public of the need for such a system, shifting social values accordingly. When the presumed consent system was implemented in Singapore, statistics showed that more people came forward as donors under a separate legal scheme as a result of heightened public awareness. Even Muslim families — whose religious tradition holds that the cadaver belongs to the family, and who were formally exempted from the presumed consent system — showed increased donation rates due to public awareness and the support of religious leaders. Third, one might question whether resources could be better employed elsewhere — but if the system solves the organ shortage and alleviates life-threatening medical conditions, it represents a small price in terms of opportunity cost (Ferlie and Pettigrew, 2004).

Historically, doctors were thought reluctant to approach the families of deceased patients about organ donation. However, research by Gentleman et al. found that request rates were in fact reasonably high, suggesting that a failure to request donations is no longer the primary cause of organ shortages. Rather, the problem with the opt-in system is its inability to enforce deceased individuals' preferences, because grieving families — unaware of the deceased's wishes — tend to veto donation out of uncertainty. For a bereft family, agreeing to organ donation is difficult when they can only guess at what the deceased would have wanted. If any doubt exists, the natural instinct is to refuse. If relatives had severe objections, those should be taken into account; forcing organ retrieval against strong family opposition raises serious ethical concerns. Nevertheless, the key point remains: by changing the default position on organ donation, a family veto that runs contrary to the deceased's wishes becomes far less likely than one that results from a simple lack of recorded information. The presumed consent system is not ethically unsound (Hatfield and Walker, 1998).

Conclusion: HIV Patients' Rights and the Path Forward

In today's world, HIV/AIDS is at a crossroads where economic and political conditions provide both the possibility of advancing scientific research toward effective pandemic management and the risk that the forces of globalized capital may serve only to extend HIV/AIDS into the most significant social crisis in human history. There is a profound and urgent issue with donor transplantation, and with kidney transplantation in particular. Some patients with Human Immunodeficiency Disease are denied equal access to kidney transplantation and are not afforded the same priorities as those suffering from other serious diseases. The evidence presented in this paper demonstrates that HIV patients have the same rights as all others to receive a kidney transplant, regardless of their disease status.

Anti-retroviral drugs (ARTs), designed to halt the deterioration of the body's immune system, have been developed but remain largely inaccessible in the developing world. HIV/AIDS prevention strategies have even lost momentum in some industrialized centers because of the availability of treatment options there. The developing world, however, has no such recourse. In largely traditional societies, indecisive leadership, intense stigmatization of HIV/AIDS status, and poor health infrastructure have created a regressive cycle with no clear exit. This clearly demonstrates that HIV is a condition serious to both the individual infected and to society as a whole, and that people living with HIV must not face discrimination when it comes to organ transplantation (Alemu, Abseno, Degu, Wondmikun, and Amsalu, 2004).

For countries facing a bleak socio-economic future due to the devastation of HIV/AIDS, the response of some governments has been startling in its inadequacy. HIV/AIDS has transcended its origins among relatively small groups such as intravenous drug users and homosexuals in wealthy nations to become arguably the greatest threat to life and prosperity in the developing world. It is estimated that approximately 53 million people worldwide are HIV-positive (Garbus, 2003). The outsourcing of expensive surgeries to Asian countries, promoted through medical tourism, represents a pragmatic and demonstrable path toward overcoming escalating healthcare costs and long waiting periods for underinsured and uninsured Americans — while upholding the principle that every patient, regardless of HIV status, deserves equal access to life-saving treatment.