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

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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.

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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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Canada’s Current State of Donation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Transplant Tourism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Key Terms .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Factors Contributing to Transplant Tourism .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Key Players . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

International Response . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Improving Organ Donation at Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Changing Consent Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Creating a National Registry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Increasing Public Awareness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Final Thoughts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Sources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

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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.

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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)

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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,

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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).

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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).

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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

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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

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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

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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

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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.

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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

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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).

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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

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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,

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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

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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

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

http://www.uniquehospitals.com/pages/transplants (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

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

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

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

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

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

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

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).

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

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

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

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.

32

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