We like to think the rules guiding organ transplant eligibility are fair and equitable. They're not

Exclusion criteria leave room for considerable discretion. Stereotypes based on social status, gender and race could play into a health care practitioner's conclusion that a person lacks sufficient social support to ensure adherence to follow-up care, for example, meaning a patient could be denied a spot on the transplant list.

The criteria do not exclude people on the basis of socio-economic status, but that may be happening indirectly

Exclusion criteria leave room for considerable discretion. (Shutterstock)

Delilah Saunders, a young Indigenous woman with life-threatening liver failure, has been in the news over the last week because she has been refused a potentially life-saving transplant. Sauders is ineligible for a spot on the liver transplant wait list due to Ontario's requirement that would-be recipients abstain from alcohol for six months in cases involving a history of alcohol abuse.

This rule has been raised in other public cases as well – often with tragic consequences.

Mark Selkirk was denied access to the transplant wait list, and he died two weeks after being diagnosed with acute alcoholic hepatitis. Cary Gallant launched a court challenge back in September after he, too, was blocked from the wait list because he did not meet the six-month alcohol abstinence rule.

Fortunately, the latest news suggests that the health of both Delilah Saunders and Cary Gallant is improving. But these cases raise the question of how society should allocate organs for transplant: who is included and who gets left behind? It is important that the wait list rules set by the Trillium Gift of Life Network (TGLN) – the provincial body responsible for organ donation in Ontario – are fair for everyone. TGLN should revisit these rules to make sure our most marginalized citizens do not end up excluded.

Not enough organs

In many scenarios, a transplant is the only life-saving option available, and it's one that depends upon the compassion of deceased donors and their families, and, where possible, living donors.

There are simply not enough transplants to go around. The Canadian Institute for Health Information reported that in Canada (excluding Quebec) in 2016, there were 474 liver transplants performed, but there were 329 people still waiting for transplants at the end of the year, and 78 people had died waiting.

The unfortunate reality is that when one person in Canada receives a life-saving organ transplant, another person will die waiting. Fairness in access is paramount for these life or death decisions.

TGLN has established publicly available criteria for who can be put on the transplant wait list. Some factors cannot be used to exclude people; the criteria state that eligibility should be determined on "medical and surgical grounds" and should not be based on "social status, gender, race or personal or public appeal."

Other factors may exclude a person from the wait list. They involve situations where it is believed the candidate is unlikely to survive or to be able to follow the necessary medical post-transplant regimen to safeguard his or her own health and that of the transplanted organ. For example, these exclusions rule out people who are not expected to survive five years after transplantation due to another illness, such as cancer; people with a recent history of drug or alcohol abuse; people with unstable psychiatric conditions; or those who lack social support and who are likely to have trouble adhering to the post-transplant medical regimen.

Indirect exclusion

There are several problems here. First, while the criteria do not explicitly exclude people on the basis of socio-economic status, that may be happening indirectly in practice. For example, intravenous drug use is often associated with a background of socio-economic deprivation; this same group is more likely to require an organ transplant due to Hepatitis C, yet will be excluded on the basis of drug misuse.

Second, the exclusion of people whose self-care abilities are compromised due to unstable psychiatric conditions or lack of social supports will, of course, disproportionately affect people living with psychiatric and mental disabilities.

Finally, some of these exclusion criteria leave room for considerable discretion. Stereotypes based on social status, gender and race could play into a health care practitioner's conclusion that a person lacks sufficient social support to ensure adherence to follow-up care, for example.

Why Delilah Saunders believes she should get a liver transplant

6 years ago
Duration 1:45
The Indigenous rights advocate was denied access to a liver transplant wait list based on a history of alcohol use disorder.

The evidence is mixed on whether six months (or more, or less) of alcohol abstinence is associated with post-transplant success. In addition, we need evidence on how those living with psychiatric conditions or mental disability will fare post-transplant. Critically, we do not know how these groups would do if given adequate access to social supports, addictions treatment and mental health care.

TGLN is launching a study this summer to evaluate the six-month alcohol abstinence rule. In our view, similar scrutiny of the exclusion of those considered unable to manage the post-transplant medical requirements due to psychiatric or mental disabilities is also sorely needed.

In the meantime, transparency in the system is essential. To evaluate the impact of race, gender and disability, the public should have access to demographic information on who is included or excluded from the transplant wait lists. The province must also take further steps to promote transplant success for all Ontarians by providing these patients with adequate access to drug and alcohol abuse treatment, mental health care and social supports.   

Jennifer A. Chandler and Vanessa Gruben are professors of law at the Centre for Health Law, Policy and Ethics, University of Ottawa, and researchers with the Canadian National Transplant Research Program.

This column is part of CBC's Opinion section. For more information about this section, please read this editor's blog and our FAQ.