ORGAN DONATION: TIME FOR LIFE SAVING CHANGES KINGA STANKOWSKA. Integrated Studies Project. submitted to Dr. Angela Specht

Transcription

1 ORGAN DONATION: TIME FOR LIFE SAVING CHANGES By KINGA STANKOWSKA Integrated Studies Project submitted to Dr. Angela Specht in partial fulfillment of the requirements for the degree of Master of Arts Integrated Studies Athabasca, Alberta May, 2012

2 Abstract In 2010, 247 Canadians died before an organ became available (Canadian Institute for Health Information, 2010). For those patients that do not want to die waiting, they turn to a dangerous alternative of illegally obtaining an organ abroad, in what has become an alarming trend known as transplant tourism (Berhmann & Smith, 2010). Each year, roughly 20 Canadians seek organs for transplant on the black market in countries such as India, China and the Philippines (Fayerman, 2010). Transplant tourism has a variety of implications not only on the individuals involved, but it poses a major burden on the Canadian healthcare system (Fortin, Roigt & Doucet 2007). Therefore I have identified three steps to improve the current organ donation system in Canada, so that Canadians can avoid turning to transplant tourism. These improvements including changing the consent options, creating a national registry and increasing public awareness will require the cooperation of not only national and provincial leaders, but Canadian citizens as well. 2

3 Table of Content Introduction... 4 Organ Donation... 5 Defining a Phenomenon... 5 Historical Evolution... 6 Types of Donation... 6 Governing Influences... 9 The Ontario Experience Canada s Current State of Donation Transplant Tourism Key Terms Factors Contributing to Transplant Tourism Key Players International Response Improving Organ Donation at Home Changing Consent Options Creating a National Registry Increasing Public Awareness Final Thoughts Sources

4 Introduction Imagine being one of the thousands of Canadians waiting at home for that one call that would change your life. Hello? Mam? We have an organ available for you. Canada has embraced this fast moving area of medicine involving organ transplants, and has been fortunate enough to develop the necessary tools it needs for organ donation. For many that call never comes. In 2010, 247 Canadians died before an organ even became available (Canadian Institute for Health Information, 2010). For others, the call may just take too long. In Ontario, there were 1509 individuals waiting for an organ in 2010, and 4529 individuals waiting through out the rest of Canada (Canadian Institute for Health Information, 2010). For those patients that do not want to die waiting, they may turn to a dangerous alternative of obtaining an organ abroad, in what has become an alarming trend known as transplant tourism (Berhmann & Smith, 2010). Each year, roughly 20 Canadians seek organs for transplant on the black market in countries such as India, China and the Philippines (Fayerman, 2010). There is also data to suggest that approximately 215 Canadians sought transplants outside Canada between 1995 and 2004 (Fayerman, 2010). Transplant tourism, however, has a variety of implications not only on the individuals involved, but it also poses a potential major burden on the Canadian healthcare system (Fortin, Roigt & Doucet 2007). To understand why Canadians may choose to seek organs abroad, I analyse Canada s current Organ Donor System in order to identify what we as a country can do to help prevent transplant tourism from becoming a popular alternative by improving our own system at home. 4

5 As such, the following essay is separated into three parts. The first portion of the essay provides readers with an understanding of organ donation in Canada and in Ontario. A brief introduction of what organ donation is, its history, as well as the different types of donors is provided. I also examine who governs organ donation by focusing on the federal and provincial. Lastly I provide a current view of organ donation in Canada, and in Ontario. The second portion of the essay reviews Canada and its association with transplant tourism. First key terms associated with the dangerous phenomenon are addressed. Secondly the factors influencing Canadians to participate in transplant tourism are presented. Additionally, the main players associated with transplant tourism are identified and closely examined. Lastly, the international community s response to transplant tourism is presented. The last portion of the essay looks at possible solutions to improve organ donation in Canada in order to try to limit Canadians from participating in transplant tourism. I examine three possible steps that can be taken by government leaders from both levels of government as well as by the public. The ultimate aim of this essay is to provide a general discussion with respect to improving organ donation in Canada with a focus on Ontario. Organ Donation Defining a phenomenon Organ donation and transplantation is a worldwide phenomenon with a relatively recent historical evolution (Ashcroft, 2009). Organ donation is allowing a healthy organ or tissue to be removed from one person (the donor) and given to another (the recipient) 5

6 for transplantation (Taranto, 2010). Therefore, organ transplantation is defined as the surgical removal of an organ or tissue from a donor and placing it in the recipient (Taranto, 2010). A Historical Evolution The first successful solid organ transplant was in 1954 when American doctors performed a kidney transplant between identical brothers (Ashcroft, 2009). Shortly thereafter in 1958, the first successful Canadian solid organ transplant occurred in Montreal, when Dr. John Dossetor performed a kidney transplant between identical twins (Unger, 2011). As of the late fifties, transplantation has become an intricate science due to the rapid enhancement of knowledge, techniques, and technologies. The sixties were marked by the world s first successful lung transplant performed in Toronto in 1963, as well as a liver transplant in Denver in 1967 and a heart transplant in the same year in Cape Town (Ontario Ministry, 2009). Pancreatic and small intestine transplants eventually followed (Ontario Ministry, 2009). With time, the success of transplant procedures has increased over the last few decades and patient recovery rates have improved significantly (Ontario Ministry, 2009). Types of Donations There are several reasons why a person may require a transplant. For one, there are hundreds of diseases that could affect an organ to the point that a transplant is required (Trillium, 2012). Organ transplants are an option when an organ is failing. A transplant may be the best course of action for a person with kidney failure and is the only therapy for patients with end stage heart, lung or liver disease (Ontario Ministry, 6

7 2009). Therefore, depending on which organ that is needed, a person may receive the organ from a deceased or living donor (Ontario Ministry, 2009). Deceased Organ Donation In most cases, organ donation occurs after the donor has died. The two criteria for deceased organ donation are: Neurological Determination of Death Donation after Cardiac Death 1) Neurological Determination of Death Deceased organ donation takes place when an individual has been declared brain dead. A doctor determines that the organs can be used for transplantation, and the individual s family agrees to artificially maintain vital organs by a ventilator to keep them suitable for transplantation (Trillium, 2012). This type of donation is referred to as donation after neurological determination of death (Trillium, 2012). Neurological determination of death is the final end point of any form of brain injury that results in uncontrollable intracranial hypertension and the arrest of cerebral blood flow (Trillium, 2012). The most common causes of neurological death are traumatic brain injury, cerebrovascular accidents and hypoxic-ischemic injury after cardiac arrest (Trillium, 2012). The time from injury to diagnosis of neurological death varies from hours to many days, depending on the severity of initial injury and the response to therapy (Trillium, 2012). 7

8 2) Donation After Cardiac Death Donation After Cardiac Death refers to the donation of vital organs after the death of a donor that is defined as a cardio-circulatory death, and not a brain death. These donors are sometimes called non-heart beating donors (Unger, 2011). Donation after cardiac death allows families the option of donation in cases where the neurological criteria for death have not been met, but the decision to withdraw life-sustaining treatment has been made (Trillium, 2012). In these situations, the patient has no hope of survival or meaningful functional status. Organ donation is only considered after an independent decision by the patient or family to withdraw life support has been made (Trillium, 2012). While in many countries outside of Canada, donation after cardiac death has been an option for families for over thirty years, Canada has only recently started accepting donations following cardiac death (Ammann, 2010). The first donation after cardiac death procedure in Canada was performed in Ottawa, in June 2006 (Unger, 2011). Currently, a deceased donor is able to donate his or her lungs, liver, pancreas, and kidneys. The heart however can only be donated in cases of neurological determination of death (Trillium, 2012). Living Organ Donation In some cases, an organ may be donated from living donors. Living donation occurs when a living person donates an organ or part of an organ for transplantation to another person in need (Trillium, 2012). It is one of the most important sources of organs for transplantation accounting for 231 transplants in Ontario alone, and is a significant portion of the increase in organ donation over the last ten years (Trillium, 2012). 8

9 Living donors are most often relatives or close friends of the recipient. However, other types of living donation are available, including anonymous donation, list exchange, where a donor who is incompatible with his or her intended recipient offers to donate to a stranger; and paired exchange, where two donors who are incompatible with their intended recipients, exchange recipients (Ontario Ministry, 2009). The most common living donation is the kidney and it is the most successful of all transplant procedures, however it is now possible for a living donor to donate a part of their liver (lobe), lung (lobe), small bowel and pancreas to a recipient (Trillium, 2012). Furthermore, the long-term transplant survival rates tend to be higher for recipients who receive an organ from a living donor that from a deceased donor (Trillium, 2012). The Governing Influences Organ donation is a complex phenomenon that involves participation from a number of individuals, organizations and levels of government in order to serve the public. In Canada, providing health care is mostly managed at the provincial level, but the federal level does maintain some important responsibilities. The Federal Influence The federal government is the overall protector of Canada s national health system. It must ensure that it forms partnerships in health with the provinces and territories (Health Canada, 1999a). It is also the federal government that ensures public safety, by creating the legislations, and ensuring that health programs and standards are in place to protect and promote the health of the Canadian population (Health Canada, 1999a). Health Canada is the federal department in charge of establishing a sound set of 9

10 guidelines to assist members of the health community in keeping up with the changes in organ donation. In 1995, Health Canada sponsored the National Consensus Conference on the Safety of Organs and Tissues for Transplantation (Ashcroft, 2009). What evolved was the first draft version of what would later transform into the National Standard (Ashcroft, 2009). In 1996, Health Canada established a working group to assist in the development of safety standards for organ donation. In 2000, Health Canada made strides to address various aspects associated with donation by drafting the first national guidance document to assist health care professionals in the compliance of the existing standard (Ashcroft, 2009). The Cells, Tissues, and Organs Regulations came into effect in December 2007, falling under the Food and Drugs Act (Health Canada, 1999a). "The regulations outline requirements for the registration of transplant establishments; donor suitability assessment; and operating procedures" (Ashcroft, 2009). As science and technology continue to evolve rapidly, it has become much easier to update standards and guidelines, rather than updating regulations, as such, the guidelines document was updated in 2009 under the title Guidance Document for Cell, Tissue and Organ Establishments Safety of Human Cells, Tissues and Organs for Transplantation (Unger, 2011) to account for the evolving changes. The Provincial Influence Each province is responsible for the overall direction and operation of its health systems. While the province has a dual responsibility to ensure that it maintains a national partnership with the federal government, it is the province that is responsible to preserve, protect and improve the health of Canadians and must ensure the long term 10

11 sustainability of the organ donation system within its province, by monitoring and assessing the effectiveness of its donation programs (Health Canada, 1999a). As health care is largely managed at the provincial level, each province had its own organ donation and transplant system, which creates its own policies for organ allocation, and these allocation protocols are then implemented by organ procurement organizations (Unger, 2011). Depending on the province, there may sometimes be more than one organ procurement organization in a single province, such as in Alberta, and sometimes there are multiple provinces serviced by one organ procurement organization, such as in the Atlantic Provinces (Unger, 2011). Currently matching donors and recipients is done provincially through these local registries (Unger, 2011). The Ontario Experience In Ontario, organ donation has experienced an evolution in how it is managed and includes a number of organizations that have assisted the province in developing a system to assist the public with donating organs. Organ Donation efforts originally began in Ontario with the Metro Organ Retrieval and Exchange Program in 1976 (Ontario Ministry, 2009). The Toronto General Hospital and the Kidney Foundation of Canada (Ontario Branch) supported four Toronto hospitals involved in kidney transplantation in their efforts to not only increase the number of kidneys for transplant but to also increase the number of organ donations by non-transplant centers (Ontario Ministry, 2009). The Metro Organ Retrieval and Exchange program was eventually expanded beyond the Toronto area, to include Hamilton, London, Kingston and Ottawa (Ontario Ministry, 2009). In 1984, the Metro Organ Retrieval and Exchange program changed names to 11

12 Multiple Organ Retrieval Exchange Program and became responsible for facilitating organ donation throughout Ontario (Ontario Ministry, 2009). In 1999, Multiple Organ Retrieval Exchange Program became known as Organ Donation Ontario and was responsible for promoting organ donation (Ontario Ministry, 2009). Organ Donation Ontario s main duties were to operate computerized transplant waiting lists, promote organ donation, and oversee the implementation of standards and guidelines (Ontario Ministry, 2009). In early 2000, the Advisory Board on Organ and Tissue Donation was created by Ontario s Premier, and was tasked with developing a comprehensive plan and strategy to double the organ donation rate by 2005 (Ontario Ministry, 2009). The Board made 16 recommendations that addressed: legislative and organizational requirements to increase donations; supports for living donors; tissue bank structures and funding; promotion and advertising; education and communications; and donor cards (Ontario Ministry, 2009). The Advisory Board on Organ and Tissue Donation recommended that Trillium Gift of Life Network be created as a stand-alone entity with statutory authority, who would be accountable to the Minister, led by a CEO and board of directors, and supported by a head office and regional offices (Ontario Ministry, 2009). The Board further recommended that Trillium become Ontario s organ procurement organization to manage organ and tissue donation efforts (Ontario Ministry, 2009). The Ontario Government agreed to the Board s recommendation and created the Trillium Gift of Life Network in December 2000, to be Ontario s central organ and tissue donation agency (Ontario Ministry, 2009). Trillium is an Act corporation established under the Trillium Gift of Life Network Act (Ontario Ministry, 2009). In March 2002, a 12

13 Memorandum of Understanding between Trillium and the Minister clarified the operational, accountability, financial, administrative, auditing and reporting relationships (Ontario Ministry, 2009). Ultimately, Trillium s vision is to be a world-class organization that enhances and saves lives through organ donation. Its mission is saving and enhancing more lives through the gift of organ donation in Ontario (Trillium, 2012). Canada s Current State of Donation Becoming a Donor Under the current system in Ontario, Canada, to become a donor one must express consent, or choose to be a part of the organ donor program. Any citizen of Ontario, with a valid health card, and who is over the age of 16, is able to donate (Service Ontario, 2012). An individual who wishes to donate can sign a donor card, and must also register their consent online with the Ministry of Health and Long-Term Care (Service Ontario, 2012). The Ministry will disclose information about the donor s decision to the Trillium Gift of Life Network, to ensure that the decision to donate is known and respected (Service Ontario, 2012). It seems easy enough to be come a donor in Ontario, yet a 2004 survey illustrated that while 73% of Canadians intended to donate their organs, only 34% actually signed their donor cards (Unger, 2011). Additionally, a similar survey in 2005 identified that only 54% of Canadians had signed donor cards and only 17% had registered with a provincial registry (Unger, 2011). A potential reason for these numbers may be that under the current system there is little incentive for someone to sign a donor card (Ammann, 2010) or register their consent online. 13

14 Donations by the Numbers As Canada has kept up with this quick paced side of medicine, Canadians are able to benefit from receiving transplanted organs, but the technological capability has drastically outpaced the availability of organs (Ashcroft, 2009). This has become a problem, as there are more patients waiting for organs, than individuals willing to donate, as seen by the above two survey results. When compared to other countries, Canada is barely keeping up with their donations rates. The most commonly employed statistic in characterizing organ donation is donations per-million-population (PMP) (Unger, 2011). Donation rates tend to vary drastically from 39 PMP in Spain to 0.6 PMP in Japan (Unger, 2011). Currently Canada's rate of organ donation is approximately 14 donors per million, which is less than half that of the best performing countries, compared to Spain and the United States of America, which has a rate of 32 per million (Connor & Lem, 2010). Furthermore, there are stories from all over the country, of patients waiting years for organs that never arrive. In 2010, 247 Canadians died before one even became available (Canadian Institute for Health Information, 2010). Ontario, alone has one of the longest wait times for patients, in 2010 there were 1509 individuals waiting for an organ, compared to the national wait list of 4529 individuals waiting (Canadian Institute for Health Information, 2010). The wait lists differ across the country, and as such a patient may have better luck if they live anywhere else in the country except Ontario (Connor & Lem, 2010). In Ontario there is evidence that while organ donation awareness is on the rise, organ donation itself is not (Wile, 2010). A study identified that the number of deceased 14

15 organ donors rose from 420 in 1999 to 492 in 2008, which is still considered well below international standards (Ogilvie, 2009). "This has been such a festering problem in Canada and in Ontario that organ donation, and deceased organ donation in particular, is very poor," according to a medical director of the transplant program at Toronto General Hospital (Ogilvie, 2009). A report by the Canadian Institute for Health Information (CIHI), release on February 13, 2012, indicates that donor rates have stagnated in the country since 2006 and in 2010, there was an increase of only 5 donors and 29 transplant procedures from 2006 (Ogilvie, 2012). Unfortunately the CIHI report does not offer an explanation of why organ donation rates have not increased, and why Canada is having a hard time finding donors in Canada, and especially in Ontario. Nor does it offer any solutions as to how to increase organ donation for Canadians. These long wait times, shortages of organs, and in some cases a desperate fight to continue living, motivates 20 some Canadians every year to travel abroad and search for life saving transplants on the black market. Transplant Tourism Key Terms While it is not unheard of for patients to travel for medical reasons, there is an emerging evolution of terms distinguish when such travel is safe and legal, and when it is not. Medical tourism is a general term that describes patients traveling to obtain health services (Behrmann & Smith, 2010). Medical tourism encompasses a large number of growing specializations and services which has been divided into sub-domains, one of which is organ transplant tourism (Behrmann & Smith, 2010). 15

16 It is important to note that travel for transplantation is solely the movement of organs, donors, recipients or transplant professionals across jurisdictional borders for transplantation purposes (Behrmann & Smith, 2010). Travel for transplantation becomes organ transplant tourism when the resources (organs, professionals and transplant centers) devoted to providing transplants to patients from outside a country undermine the country s ability to provide transplant services for its own population (Behrmann & Smith, 2010). For clarity s sake, I refer to organ transplant tourism as transplant tourism, only. Additionally, transplant tourism occurs when it involves organ trafficking and/or transplant commercialism (Behrmann & Smith, 2010). Organ trafficking is defined as the recruitment, transport, transfer, harbouring or receipt of living or deceased persons or their organs by means of the threat or use of force or other forms of coercion, of abduction, of fraud, of deception, of the abuse of power or of a position of vulnerability, or of the giving to, or the receiving by, a third party of payments or benefits to achieve the transfer of control over the potential donor, for the purpose of exploitation by the removal of organs for transplantation (Behrmann & Smith, 2010). Lastly, transplant commercialism is a policy or practice in which an organ is treated as a commodity, including by being bought or sold or used for material gain (Behrmann & Smith, 2010). It is estimated that approximately 10% of organ transplants performed throughout the world involve these practices (Honey, 2009). Essentially transplant tourism can be simply defined as individuals turning to other means that are not available in their home jurisdictions and ultimately buy the organs they need for lifesaving transplants in other jurisdictions. It is important to note that in Canada, such transactions are illegal, with fines and jail terms for all parties 16

17 involved (Jonas, 2011). Of course, some Canadians would rather risk the jail terms and fines than die waiting for an organ transplant (Jonas, 2011), so much so that within an eight-year period, 93 Canadians from British Columbia bought purchased kidneys overseas (Unknown, 2010a). Factors Contributing to Transplant Tourism There are a number of factors that seem to influence Canadian s willingness to participate in transplant tourism. While it is impossible to list all of them, I have identified some key factors that are important and relevant in addressing why Canadian patients may seek treatment outside of their respective home jurisdictions: Long Wait Times A key problem that patients encounter when requiring transplants are long wait times. As previously discussed, in 2010, 247 Canadians died before an organ became available (Canadian Institute for Health Information, 2010). Ontario alone has one of the longest wait times for patients, with an average of over 1500 individuals waiting for some type of organ, compared to the national wait list of 4529 individuals waiting (Canadian Institute for Health Information, 2010). To avoid death, these patients may turn to transplant tourism. There is data to suggest that within a ten year period, approximately 215 Canadians chose transplant tourism as an option (Fayerman, 2010). Gap between Supply & Demand The reason for such long organ transplant wait times is due to a widening gap between the supply of organs and the demand for organs. As the success rate of transplantation rises so does demand, which is further boosted and complicated by the aging of the population and higher rates of kidney failure (Milne, 2009). Unfortunately, 17

18 there has been no corresponding increase in organ availability on the supply side. Many doctors report that organ donation rates can't keep up with the rise in demand (Milne, 2009). As mentioned earlier, Canada's current rate of organ donation is approximately Canada's rate is about 14 donors per million, which is low compared to that of the best performing countries, such as France (22) Spain (35) and the United States of America, which has a rate of 32 donors per million (Milne, 2009). It is this disparity between supply and demand which suggests why transplant tourism as a life saving service might emerge to meet a need, that is not being met in the patient s home country (Lita, 2008). What this scenario does not necessarily address is why people in these organ tourism destinations would offer themselves, or a part of themselves, up in exchange for money (Lita, 2008). I address the issues of why people may offer organs, in the following section, when I examine the key players in transplant tourism. Key Players With respect to Canadians and transplant tourism, I examined four key players: the donor or seller; the middleman; the recipient, and the transplant physician (Fortin, Roigt & Doucet, 2007). The Donor or Seller Researchers have determined that the main motivation for such willingness to participate in such health risk transactions is poverty (Fortin, Roigt & Doucet, 2007). Transplant tourism is believed to be a significant source of income for local economies in developing countries, (Behrmann & Smith, 2010). Studies indicate that by expanding the transplant tourism market it may encourage health professionals and governments to 18

19 focus their careers and resources towards private facilities that treat the needs of foreigners, thus helping the local economy grow (Behrmann & Smith, 2010). However there is the concern that such development risks compounding the existing health inequalities both locally (between rich and poor) and between the developed and developing world (Behrmann & Smith, 2010). Furthermore, some research suggests that the transplant tourism is unlikely to improve population health and access to healthcare for the majority of impoverished peoples within these nations (Behrmann & Smith, 2010). With respect to the donor s financial situations, there are some cases of donors being recruited in Brazil, Israel and Romania with offers of $5,000-20,000 to visit Durban and forfeit a kidney (Anonymous, 2008). However, there is little evidence that they actually received the amounts promised to them, or that their socio-economic status improves drastically after the transaction (Fortin, Roigt & Doucet, 2007). It has also been reported that sellers do not receive any follow-up care, however, whether the issue of after-care is discussed with the donor is not always clear (Fortin, Roigt & Doucet, 2007). Where do these sellers come from? Organ sellers are mostly from vulnerable and impoverished populations in developing countries (Honey, 2009). India and Iran are known to be major hot spots for transplant tourism (Fortin, Roigt & Doucet, 2007). Until very recently, in China most organs were procured from condemned prisoners, without the required consent from said prisoners and some organs were illegally harvested from Falun Gong practitioners (Fortin, Roigt & Doucet, 2007). These sources were known to be a ready supply of organs plucked from the bodies of the thousands of people who were executed every year (Anonymous, 2008). Recently, China has modified its laws to ban 19

20 the commercial trade of organs and to make it mandatory to obtain a donor s consent before harvesting organs (Fortin, Roigt & Doucet, 2007). There are also reports of Russian, Moldovan, Ukrainian and Romanian sellers advertising organs for sale (Vakin, 2010). In some cases, sellers offer their wares openly, through newspaper ads or through Internet search engines (Vakin, 2010). Prices that are promised to the donor can reach $68,000 and compared to an average monthly wage of less than $200, this is an unimaginable fortune for some (Vakin, 2010). However, no accurate financial data exists to indicate how much of this amount the donor actually receives (Behrmann & Smith, 2010). The Middle Man or Broker In Western countries, such as in Canada, there are middlemen who set up websites, offering to make the necessary arrangements for Westerners to receive a transplant abroad (Fortin, Roigt & Doucet, 2007). In Calgary for example, it is reported that there is a firm offering to organize transplants overseas for Canadians under the URL (Fortin, Roigt & Doucet, 2007). Accessing this website now leads patients to a medical tourism website, which provides services that resemble the services offered by travel agencies specializing in traditional holiday travel. Additionally there are a number of companies located across Canada that advertise to arrange medical tourism vacation packages for those seeking medical treatments abroad (Behrmann & Smith, 2010). Currently, there is no law in Canada prohibiting these companies from advertising their services (Behrmann & Smith, 2010). In foreign countries, the middlemen tend to be the ones who recruit donors and sellers as well (Behrmann & Smith, 2010). It is important to note that there are some 20

21 instances where the individuals who have been recruited to sell or donate their organs have been exploited and coerced into selling their organs, having claimed that it is not something that they would not normally do (Milne, 2009). In other instances, these organs have been harvested from prisoners after execution (Fortin, Roigt & Doucet, 2007). There are reports of priests in Mexico, acting as a middleman for doctors, recruiting sellers to purchase organs for close to a $1 million dollars (Vakin, 2010). The Recipient: The Canadian In most cases, it has been reported that recipients in the transplant tourism process often feel they are in a win-win type situation (Fortin, Roigt & Doucet, 2007). The patient has an opportunity to free themselves from their current medical condition and save their own life. At the same time, the recipient believes that the transaction will help someone who is poor in a Third World country (Fortin, Roigt & Doucet, 2007). What is more likely to occur, is that the recipient is not as well informed about where their organ is from, or that the donor does not gain financially from the transaction, and may actually become worse off then before (Milne, 2009). In one report, a Canadian PhD student described his observation of poor organ sellers when he returned to his native Bangladesh, he had an opportunity to interview 33 kidney sellers. Of those, he reported that all were still living in poverty (Milne, 2009). Many lost their jobs after returning home because they could no longer lift heavy objects, such as a rickshaw (Milne, 2009). He also reported that of the sellers he interviewed, a kidney from one was transplanted into a Canadian (Milne, 2009). When the recipient returns from their transplant tourism excursion, the outcome isn t always known. In some cases, they return in good health and excellent organ 21

22 function. However, some patients return and end up immediately in the emergency room requiring urgent admission to hospital with severe infections or organ failure (Milne, 2009). One such example is Mr. George Archer, who at the age of 78, travelled to Pakistan, in May 2006, for a kidney transplant (Milne, 2009). Three weeks later he came home to Canada, with the kidney of a 22-year-old man (Milne, 2009). Within a short amount of time, Mr. Archer s transplant incision had split open. While treating him, doctors in Montreal discovered other health problems: respiratory distress, heart beat irregularity and atherosclerosis. Mr. Archer died two days later (Milne, 2009). One Canadian physician described the worst-case scenario he s encountered: One patient who contracted hepatitis from an organ donor abroad, returned home to discover she required a repeat kidney transplant as well as a liver transplant (Milne, 2009). Both of these transplants failed and she died within two years of obtaining her transplant and after having spent over 20 months in hospital (Milne, 2009). Even though transplant tourism is risky and illegal, each year, roughly 20 Canadians continue to seek organs abroad for transplantation (Fayerman, 2010). The Canadian Transplant Physician Canadian transplant physicians have found it increasingly difficult to treat patients who return from transplant holidays. Part of the problem is that transplant tourism in many ways circumvents the Canadian system. As stated earlier, many patients return from such holidays with a very high risk of contracting antibiotic-resistant bacterial infections while they are abroad, and they unknowingly bring it back to Canada (Fayerman, 2010). This places a lot of pressure on the Canadian physician and the Canadian Health Care System to try to treat these situations, which cause a strain on the 22

23 patient / physician relationship. In some cases, the physician is unable to provide treatment because the infection is too resistant and the patient doesn t survive (Milne, 2009). Canadian doctors have become the first in the world to develop an official policy in which they can refuse to treat patients bent on being medical tourists (Fayerman, 2010). The policy, created by the Canadian Societies of Transplantation and of Nephrology, allows doctors to refuse to treat patients who participate in transplant tourism. It also directs doctors to counsel their patients about the treatment of people who sell their body parts; in some cases, sellers have been taken by force, or even killed for their organs (Fayerman, 2010). If patients are determined to become transplant tourists, it is now appropriate that doctors may choose to terminate their relationship with them, and refuse to provide pre-transplant screening or prescriptions, however they must still treat emergency needs (Fayerman, 2010). International Response Transplant tourism is not just a Canadian problem it is a global problem that needs to be addressed. Whenever there is a global health issue, the World Health Organization (WHO) is the directing and coordinating authority for health within the United Nations system (World Health Organization, 2012). It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends (World Health Organization, 2012). Since 1987, the WHO has been helping countries find ways to crack down on trafficking of human organs (Fayerman, 2010). The WHO, along with the 23

24 Transplantation Society and other international transplantation groups have condemned transplant tourism (Milne, 2009). In 2004, the WHO called on its members to take measures to protect the poorest and vulnerable groups from transplant tourism and the sale of tissues and organs, including attention to the wider problem of international trafficking in human tissues and organs (Honey, 2009). The result was a published consensus statement, the Declaration of Istanbul, opposing organ trafficking and transplant tourism (Milne, 2009). The Declaration of Istanbul requires that all countries need a legal and professional framework to govern organ donation and transplantation activities, as well as a transparent regulatory oversight system that ensures donor and recipient safety and the enforcement of standards and prohibitions on unethical practices (Honey, 2009). This will include having each country strive to ensure that programs to prevent organ failure are implemented and to provide organs to meet the transplant needs of its residents from donors within its own population or through regional cooperation (Honey, 2009). While the WHO can be credited with trying to implement steps to prevent transplant tourism, it should be noted that the Declaration of Istanbul is not going to make organ trafficking disappear (Honey, 2009). Instead transplant tourism is much like drug trafficking, as long as money is involved and people need or want the service it is impossible to eradicate (Honey, 2009). Improving Organ Donation at Home While it is very ambitious to try to solve transplant tourism and improve Canada s organ donor rate with one essay, some steps can be taken to allow for a discussion on how to improve Canada s current state of organ donation to prevent Canadians for going 24

25 abroad. The final portion of this essay provides three ideas as possible steps to improve organ donation at the home. The first two steps include (1) Changing Consent Options and (2) Creating a National Registry. Evidence to support making these steps permanent can be found in supporting models from countries who boast better donor rate success than Canada. The last step (3) is to create more public awareness, which has recently shown to be quite a motivator in increasing registrants in Ontario. Changing Consent Options Currently Ontario follows a policy of informed or expressed consent where individuals must actively express a willingness to become an organ donor, as such they must opt-in (Busby, 2010). If the donor does not consent before their death, a surrogate decision maker is generally appointed by legislation to decide for the potential donor (Ammann, 2010). Surrogate decision makers are selected in order of legislative priority, with non-estranged spouses at the top and a non-family member lawfully possessing a donor s corpse at the bottom (Ammann, 2010). The key feature in an express consent system is that, without some positive consent (from the donor or surrogate decision maker), the donor will be presumed not to have consented and no organs will be removed (Ammann, 2010). When families realize their loved ones registered to donate their organs, nearly everyone honours that decision, however in the absence of consent, only 50% of families donate their loved one's organs (Aubry, 2012). In contrast, many European countries follow a policy of presumed consent: whereby people are presumed to have given consent to donate organs unless they actively decide to opt-out of an organ donation plan (Busby, 2010). On average, presumed 25

26 consent results in donation rates roughly 20 to 30 per cent higher than informed consent (Busby, 2010). The Spanish Experience Spain s rate of cadaveric donation is currently the highest in the world, and has been for some time (Ammann, 2010). As a result, Spain is often viewed as the country to emulate, especially with its adoption of presumed consent. The Spanish government enacted a presumed consent law in 1979, however the true change came into effect in 1989, when the Spanish Ministry of Health set up the National Organization of Transplants (Ammann, 2010). The National Organization of Transplants is a national body responsible for administering and coordinating Spain s system and as such they reorganized the Spanish system to allow more efficient and greater regional decision making (Ammann, 2010). These efforts bore tremendous dividends between 1989 and 2006, Spain s organ donation increased enormously and has remained at a sustained high level for years (Ammann, 2010). Can presumed consent work in Canada? One issue that seems to arise with presumed consent is that the state appears to be coercing individuals, so it may be difficult to receive public support (Busby, 2010). So much so that in a poll in the early 1990s revealed that up to 60% of Spanish citizens actually viewed the presumed consent law as an abuse of authority (Ammann, 2010). Furthermore, recent studies in Canada argue that presumed consent would be unacceptable in nations where personal autonomy is highly valued (Ammann, 2010). In 2006, Frank Markel, CEO of Ontario s Trillium Gift of Life Network, stated that he believes Ontario is not ready for presumed consent, and has indicated that presumed 26

27 consent should not be viewed as an all out solution to organ donation difficulties (Ammann, 2010). Perhaps if Ontario is not ready for presumed consent, a modification of the Spanish model could be made to improve Ontario s current expressed consent model. As such, an alternative could be called embedded request or mandated choice (Busby, 2010). Under both models Canadians are free to choose any option yes I will, no I won t, uncertain. People are frequently asked to make a choice with embedded request, whereas under mandated choice individuals are compelled to do so (Busby, 2010). In both cases, a decision is made and known. In order for these two options to be functional, the two levels of government would need to request that the individual provides their decision to donate. Further to verbal or written requests for consent upon government-issued ID card renewals, embedded requests should also appear on driver s license renewal forms and/ or tax forms (Busby, 2010). This, along with the easy-to-use donor registration website, could improve donation rates (Busby, 2010). Another bolder move would be for governments to adopt a partial mandated choice model whereby individual adults have a mandatory box in their driver s license or health-care card renewal form asking them their decision to donate (Busby, 2010). Each model would also include the families of the deceased a right of refusal (Busby, 2010). It is important to note that because roughly 10 per cent of organ donors in Canada come from children under the age of 18, which is below the registration age, their parents would still maintain the power to consent (Busby, 2010). 27

28 Ultimately, if Canada wishes to improve donor rates at home, looking at Spain s consent option making slight adjustments could be a possible solution and should be taken seriously. Creating A National Registry In Canada, providing health care is mostly managed at the provincial level, but the federal level does maintain some important responsibilities. While this has served Canadians well in most cases, when it comes to organ donation, the long wait times from across the country indicate that this is a part of the health care system that needs help. The organ donor system as a whole seems to be fragmented, with each province handling its own flux of patients. Perhaps what is needed is one central national registry, to help remove duplication of work among provinces and become a more efficient system. As a result, not only would a national registry become a helpful governing tool, it would also allow for patients waiting for organs in one province, become eligible to receive them from other provinces should they be available. Research shows that a national registry for allocating organs, similar to the United States United Network for Organ Sharing; and a nation-wide wait lists for all available organs; mandatory organ sharing should be seriously considered (Kondro, 2008). Such an initiative would require the various levels of government to collectively work together to develop a national donor registry (Kondro, 2008). One central registry could help to find organs on a national basis, and prevent Canadians from going abroad. Based on such high wait times it is very clear that provinces and the federal counterpart need to get their collective act together to create a national system and to provide national support 28

29 mechanisms to the local and provincial transplant programs that don't exist today (Kondro, 2008). National registries currently exist in other countries such as in Spain, in the United States, in the United Kingdom and Australia, and these countries have seen success once the various levels of government were able to work collaboratively to optimize their donation and transplantation opportunities (Kondro, 2008). In August 2008, Canadian Blood Services was mandated by the federal, provincial and territorial governments outside Quebec to develop recommendations on the design of an integrated organ and tissue donation and transplantation system in Canada (Kirkup, 2011). The national organization's final report was submitted to the ministries of health at all levels of government in April 2011 (Kirkup, 2011). Increasing Public Awareness In order to implement any change to Canada s organ donor system, it will require support from not only the levels of governments, but also from the public. In most cases, the public can be the first step to create change, by bring awareness to the issue. In October 2011, Hélène Campbell, a young 20 year old woman from Ottawa was informed that she needed a lung transplant (Pape, 2012). As a result of her upcoming journey, Hélène had turned to social media to not only tell her story but also to raise awareness of the importance of organ donation (Pape, 2012). She ended up catching the attention of some celebrities such as Justin Bieber, Ellen DeGeneres, and Howie Mandel, all of whom started to spread the message of becoming a donor (Pape, 2012). As a result of her use of social media, and generating public awareness about the importance of organ donation, registrations for organ donations in Ottawa have skyrocketed by more 29

30 than 8,000 since December 2011 (Aubry, 2012). The Trillium Gift of Life Network attributes it to the "Helene Campbell effect" (Aubry, 2012). Furthermore, on a provincial level, the registration numbers jumped by 2% since Campbell launched her public crusade, and Trillium explains that is quite significant because it takes 115,000 registration to move the dial one percentage point (Aubry, 2012). At the same time, in April 2012, Helene found a donor and is currently recovering from her lung transplant What Helene s story proves, is that spreading more awareness about the cause, can help to improve some of the problems with organ donation. While it would be naïve to say that all one has to do is take to social media, and the problem would be solved, it is important to note that these little steps of increasing public awareness, along with policy changes to include a change in consent and creating one national registry, can all link together to make a positive solutions for all Canadians everywhere waiting for an organ. Final Thoughts While it may be ambitious to try to solve the issues with organ donation with only a few words, the aim was to provide a general discussion about organ donation in Canada, with a focus on Ontario. Organ donation is a complicated subject that needs to be addressed, if for the sole reason to allow more Canadians an opportunity at a longer life. A review of what organ donation is, its history, as well as the different types of donors was provided to demonstrate how far Canada has come. The various governing influences have been identified, to allow us to understand how and where one can go to try to improve aspects of the donor programs. For those that feel there is no improvement needed, a look at the current donor rate in Canada and in Ontario was provided to place a numeric value to the emerging problem. Even though Canada has come long way from 30

31 the first transplant procedure in 1958, more is still needed in order to save the 3500 plus patients still waiting for an organ (Ogilvie, 2012) and to prevent from the roughly 20 Canadians that choose to participate in transplant tourism. As such, I introduced a discussion as to how transplant tourism affects Canadians, by identifying what possibly motivates them to go abroad for organs. Unfortunately there may not be one simple solution to prevent transplant tourism, but what is clear that work is required from not only Canadian leaders in both levels of government but also from the public. While the international community has taken steps with creating the Declaration of Istanbul, more is still needed. As such I reviewed models from countries, which have higher donor rates than Canada, and presented steps that should be taken by government leaders to improved organ donation. As well, a recent story regarding public awareness should not be dismissed, but rather be viewed as a powerful third step in improving organ donation in Ontario and in Canada. I do acknowledge that organ donation as a whole is a very complicated phenomenon and one that requires a lot of study. I also acknowledge that transplant tourism is a very dark and illegal alternative for Canadians who choose to pursue it. Lastly I acknowledge that my three step solution may seem naïve to fix both of these issues, but I think they are substantial stepping stones for improvement. In the meantime, I hope that the life saving call comes for the close to 4500 patients still waiting. 31