By Jennifer A. Chandler and Vanessa Gruben
Delilah Saunders, a young Indigenous woman with life-threatening liver failure in an Ontario hospital, has been in the news over the last several weeks because she has been refused a potentially life-saving transplant. The media has reported that she is ineligible for the liver transplant wait list due to the provincial requirement for six months of alcohol abstinence in cases involving a history of alcohol abuse.
This rule has been raised in other public cases as well – with tragic consequences.
Mark Selkirk was denied access to the transplant wait list, and died two weeks after being diagnosed with acute alcoholic hepatitis. Similarly, Cary Gallant was not listed this past September 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? And why Trillium Gift of Life Network (TGLN) – the provincial body responsible for organ donation in Ontario – needs to revisit the wait list rules to make sure our most marginalized citizens are not excluded.
A transplant is the only life-saving option available in many cases, and one that depends upon the compassion of deceased donors and their families, and, where possible, living donors.
There are 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, but at the end of that year, 329 people were still waiting, and 78 had died while waiting for a liver transplant.
The unfortunate reality is that when one person in Canada receives a life-saving organ, 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 waitlist. 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.
These other exclusions 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 their own health and 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.
There are several problems with these exclusions.
First, the criteria do not exclude people on the basis of socio-economic status, but 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 to 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 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.
And what about evidence?
The evidence is unclear on whether six months (or more or less) of alcohol abstinence is associated with post-transplant success. Evidence is also lacking 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 waitlists. 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 Canadian National Transplant Research Program Researchers.