The Selkirk Liver Society was founded because of the stigma attached to alcohol use disorder. Our fight began to end a policy based on stigma, not solid, historical medical research. The many challenges we faced along the way only served to convince us there was much more work to be done. In 2018, the 6-month wait for liver transplant imposed on persons with alcohol use disorder will be placed on hiatus. But in the rest of Canada, the policy remains solidly in place. People in other provinces will continue to die, because doctors don't understand and don't like the disease called alcohol use disorder. We believe it is time for change in every province.
Persons with substance use disorders continue to face stigma and discrimination by many people - in the general public, and in the medical community. The Selkirk Liver Society advocates for the human rights of all persons living with alcohol use disorder. These rights must guarantee equal access to healthcare - every program and service available to every other person in Ontario.
The fear that poor public perception of persons living with this disease would impact liver donation rates kept the 6-month wait in place for over 30 years. The American Medical Association recognized substance use disorders as diseases in the 1970s. Addiction specialists call them a 'treatable disease'. Research shows it is a disease of the brain, with the newest studies looking at a broken liver-brain communication path. Yet, every day, people call it a 'habit', a 'lifestyle choice', their 'own fault'.
We are working to end stigma wherever we find it.
Stigma and Discrimination
This T-shirt was available on the Zulily website. We contacted them to let them know it made light of a crippling disease. The T-shirt was removed from their website.
Not a character flaw.
MESSAGES FROM OTHERS
These are real email messages have come from different members of Canadian families. They are great examples of both the desperation families have faced and the stigma attached to the disease. While we believe in talking out loud about alcohol use disorder, we did not ask the people who sent the emails if we could use their names. We believe it is more important that the comments be judged on their merit.
"The surgeon said that there are other transplant patients that are more worthy than my husband and that he made the choice to drink and he caused this to himself."
"He had been sober since October and very limited in September. We had 10 donor applications submitted in Feb and he died March 20! ...They wouldn't even test them."
"I knew when I spoke to the transplant doctor he had preconceived notions of the type of person he felt she was...But to tell me that she now has to die because of a one week difference in her six month sobriety date goes against everything a doctor is supposed to do."
"We care for patients who overdose/abuse drugs and alcohol everyday, we also care for the people who are affected by people with addiction, everyday. I am referring to the thousands of people killed every year by drunk drivers."
"This type of widowhood is the only one I can think of where people have the callousness and audacity to tell me my husband did it all to himself."
"We told the doctors that he would binge drink on the weekends. I believe because of this he was given a death sentence and denied a transplant even though we have several family members that offered to be tested, which were all nondrinkers." (20 years old)
Watching someone you love struggling in the throes of alcohol use disorder causing liver failure is like watching a tortured soul standing on a ledge, ready to jump. Their death just happens in slow motion.
When someone is standing on a ledge, we are allowed to intervene. Sections 16 and 17 of Ontario’s Mental Health Act allow police officers to intervene if someone is threatening or attempting to cause bodily harm to themselves. If someone has lost control of their drinking, there is nothing a friend or family member can do.
Families should have tools to get the person they love into timely and effective treatment. There is nothing more painful than watching someone struggle with their alcohol use disorder, whether in the context of liver disease or the development of an unborn child.
The Selkirk Liver Society has a strong interest in partnering with other organizations to develop a made-in-Ontario solution that mirrors the intervention powers of the Marchman Act, while ensuring compassion and respect for human rights.
The Marchman Act is a substance use disorder program of the Florida Department of Children and Families. The act, written in 1993, “provides an array of statutorily protected rights of persons seeking and or receiving substance abuse services as well as due process rights of those persons for whom involuntary interventions are sought". Section 397.675 allows concerned family members to go before a judge and present arguments that someone has lost control of their ability to control their substance use disorder:
A person meets the criteria for involuntary admission if there is good faith reason to believe the person is substance abuse impaired and, because of such impairment:
(1) Has lost the power of self-control with respect to substance use; and either
(2) (a) Has inflicted, or threatened or attempted to inflict, or unless admitted is likely to inflict, physical harm on himself or herself or another; or
(b) Is in need of substance abuse services and, by reason of substance abuse impairment, his or her judgment has been so
impaired that the person is incapable of appreciating his or her need for such services and of making a rational
decision in regard thereto; however, mere refusal to receive such services does not constitute evidence of lack of
judgment with respect to his or her need for such services.
If the judge finds their arguments credible, they can order a mandatory assessment that evaluates the person’s physical and mental health. If the assessment recommends treatment, the person may be taken to treatment for up to 60 days.
A Marchman Act-type assessment would have revealed a dangerous level of liver failure in Mark Selkirk and provided an opportunity to get him to a treatment centre before it was too late. In 2012, a petition for this type of legislation was read aloud in the Ontario legislature. Several months later, the Ministry of Health responded that the government already had an alcohol policy. It remains unknown exactly what that document is.
In December 2015, Premier Kathleen Wynne announced that Ontario would be releasing a new alcohol policy in the spring of 2016. That document remains outstanding.