Leslie McBain advocates for those struggling with addictions and the families who love them.
THE FIRST NINE MONTHS OF 2017 saw more than 1,100 British Columbians die due to a suspected illicit drug overdose. In 2016—another depressingly bad year—there were 981 deaths. In fact, BC is leading the country in such deaths. The whole of Vancouver Island, along with some Lower Mainland areas, have the highest rates of death from illicit drugs in BC.
So it was welcome news in December that the new BC government has a plan. It will establish an Overdose Emergency Response Centre in Vancouver with dedicated, expert staff working with five regional response teams (starting in January) to co-ordinate and strengthen addiction and overdose prevention programs. Provincial Health Officer Dr Perry Kendall was pleased, pointing out that, up until recently, the crisis had been handled mostly by people working “off the side of their desks.” In all, $322 million in new funding was committed.
Fentanyl is the main cause of the spike in deaths related to illicit drug use. It was involved in 83 percent of deaths in 2017, often combined with drugs like heroin, cocaine or methamphetamines. And now there are deadly variations like carfentanil and cyclopopyl fentanyl being detected. Keeping up to date on the evolving realities of the opioids in circulation will be one of the main tasks of the new provincial centre.
One of the most effective groups lobbying all levels of government for action on the opioid crisis is Moms Stop The Harm, formed by three Canadian women who have lost children to a drug overdose. Besides offering support and resources for families affected by addiction, these women and their now 300 members have developed into a highly knowledgeable and professional all-volunteer organization. They have fought for free access to the overdose-reversal drug Naloxone, the implementation of supervised consumption services and needle exchange programs, and accurate health data that is public and shared in a timely manner. Rather than the failed “war on drugs” or “just say no” approach, the organization urges good-quality education as the best protection.
The stories of the Moms (and some dads—see their website) are heart-breaking. Smart, funny, beautiful young people are dead, sometimes after years of struggling with drugs, sometimes after a one-off recreational use. The deaths occur despite families pulling out all stops to help their child. Of course they ask themselves if they had understood more, or if the doctors had, or if more support had been available—would their child still be alive? They work to ensure others don’t end up with the same grief and questions.
One of the co-founders of Moms Stop the Harm, Leslie McBain, lives on Pender Island. She tells me her only child Jordan grew up on Pender and had a happy childhood. He went on travels to foreign lands with his parents, who ran a small plumbing business and had a loving extended family. In his teens, however, he started drinking and smoking pot and had difficulty controlling his use. His parents, always close to him, tried everything they could think of to help him. “His need for drugs is still a mystery—the biggest mystery of my life,” reflects McBain. Still, at that early stage, he had lots of support and was not in danger of dying from the drugs he was taking.
Leslie McBain (Photograph by Rachel Lenkowski)
After a back injury on the job, however, Jordan’s doctor prescribed Oxycodone. His parents tried to tell the doctor that this was a mistake, that some less addictive treatment should be offered, to no avail. Jordan’s addiction soon became all-consuming. Eventually, his prescription was cut off—without support for withdrawal or recovery. He turned to the street for drugs. He was obsessed with his next fix, yet he knew he had to get off the drug. “He really wanted to get clean. He researched and found a detox facility and went,” says McBain. But he was released after 12 days despite still being in painful withdrawal. “We could find no post-detox support,” says McBain, who helped him settle into an apartment in Victoria. “Withdrawal is ugly and painful. There are digestive, intestinal issues, nerves are affected, there are muscle spasms.” Jordan knew about Suboxone, now widely accepted as a form of “medication-assisted treatment,” but four years ago could not access it. Seven weeks after detox, still in pain, Jordan sought out illicit drugs to medicate himself. He died at age 25.
That was in 2014. A year later, McBain connected with two other women who had lost sons to drugs, and they formed Mothers Stop the Harm. They have since been joined by many more parents all across Canada.
“The worst has happened to us,” says McBain. “It allows us to be brave. Nothing much scares us.” They give speeches, they meet with Prime Minister Trudeau and his cabinet, they try new awareness campaigns. Whatever it takes.
Besides her work with Moms Stop the Harm, McBain has a half-time job with BC Centre on Substance Use, an organization dedicated to developing evidence-based approaches to substance use and addiction. She also teaches memoir writing to adults and story writing to teens. She spoke to me from her Pender Island home.
Q. You lost your son Jordan through an opioid addiction in 2014. Looking back, what are a few key things that could have altered his path and prevented his death?
A. Three key things that could have potentially saved my son Jordan from an opioid addiction and overdose death are these: parental education (mine) on signs and risks associated with problematic drug use; the remediation of our family doctor’s dismal lack of knowledge around the risks of overprescribing opioids; and the existence of medical and psychological support for Jordan after he came out of the detox facility.
Q. Was your growing understanding of the issues around his death what prompted you, along with two other moms who lost children, to form Moms Stop the Harm in 2016? How has it grown and evolved since then?
A. Generally we moms blame ourselves when we lose a child to drug use. But I also knew without a doubt soon after Jordan’s death how the system had failed us. Or to be more precise, the lack of a system. I saw the great gaps in the continuum of care here in BC and the apparent lack of accountability for doctors’ prescribing practices. Needing answers and not wanting another family to go through this tragic and painful experience led the three of us, Petra Schulz, Lorna Thomas and me, who had all lost sons, to form an advocacy group before heading to the UN General Assembly Special Session on Drug Use. Hearing our then Minister of Health Dr Jane Philpott speak to the UN General Assembly on progressive reform of policies and perspectives on problematic drug use prompted us to formalize and intensify our advocacy—this grew into Moms Stop the Harm (MSTH). Our membership has grown to well over 300 families across Canada who have either lost a loved one or still have a loved one in active addiction. We give some emotional support to these families and show them how to be advocates to support drug users if they so choose.
Q. In December, the BC government announced new measures to help with the opioid crisis, primarily to establish a new Overdose Emergency Response Centre (OERC) that will link to regional and community action teams in BC communities. How do you think this will help? Would it have helped you and your son?
A. I am pleased to see action taken that is concrete and progressive. It is far too early to tell exactly how the OERC will roll out for those on the ground. We advocate for families being at the centre of treatment for people in mental health and addictions crises, and so far families have been included, on paper. I believe this approach will begin to help the under-served communities around the province.
I am cautiously optimistic that Minister of Mental Health and Addictions Judy Darcy and her excellent team will use the wisdom of the BC Centre on Substance Use and Moms Stop The Harm to address addictions and the fentanyl poisoning epidemic. She has been very consultative so far. The minister has promised rapid response to people who need and want treatment. However, rapid response and help needs an infrastructure that is not yet in place. There is always a waitlist for recovery beds. From the Liberals to the NDP we have been promised “more beds,” yet we have seen very few new sudsidized facilities. There is a lot of work to be done.
Q. What else is missing—what more would you like to see from the provincial government?
A. We need to see the funding that will allow existing front line organizations to do their work (which I see as government’s work). We need to see many more dollars go efficiently into bolstering the number of addictions doctors and training existing medical personnel. We need the Ministry of Education to engage in a meaningful way with real, science-based education on mental health and addiction in schools. There are so many ways that the provincial government can mitigate this crisis. If the OERC works the way the government intends, it will be immensely helpful to the cause. It is being worked on, but not quickly enough. People are dying in the meantime.
Q. Your organization has lobbied the federal government to decriminalize possession of illicit opioids and establish safe consumption sites. What progress has been made in such areas? What else should the federal government be doing?
A. All the harm reduction initiatives we have advocated for in the past few years have been aimed at keeping people who use drugs alive. Safe consumption sites have saved countless lives. The Good Samaritan Law, which protects those who call 911 in an overdose situation, has saved lives. The widespread, low barrier access to the opioid reversal drug Naloxone has saved thousands of lives. MSTH is proud to have been one of the voices to effect these changes.
Decriminalization still seems a way off, but we ask for this policy change every single time we have access to a federal official.
The act of decriminalizing drug possession and drug use would have so many positive effects. People with substance use disorder have a disorder like many others on the medical front. They must have the drug or they will become very ill. Criminalizing this disorder, sending people to jail for possessing and using the “medicine” they need, is inhumane and absurd. Jail does not end addiction. Decriminalizing illicit drug use and treating people instead—as is done in Portugal—is the humane way to approach addiction.
In my opinion, decriminalization is seen as a radical hot potato for politicians. They are simply afraid to wade into it because they might lose their jobs. It is a big but necessary step.
We have met with Prime Minister Trudeau and with the two most recent Ministers of Health (Dr Jane Philpott and Ginette Petipas Taylor), as well as MPs across the country, asking them to move quickly towards decriminalization of certain drugs. This does not mean legalization; it means that people who carry and use drugs are not arrested and prosecuted because of their drug use.
Prime Minister Trudeau indicated in a meeting we had in March that he is working hard on decriminalizing cannabis. The implication was that this is enough for now. Decriminalizing drugs is a long, arduous process and controversial, too. It is a political quagmire, so I think this is why the government continues to stall on this.
MSTH has also asked repeatedly for an anti-stigma campaign to be rolled out by the Feds. The newly created Federal Opioid Response Team requested a teleconference with the MSTH leaders in early December to consult with us on the best approaches. We are optimistic that a campaign will land quickly. Until the public is educated on the nature and science behind addiction, and about evidence-based treatments, it won’t fully support changes in drug policy.
Q. What measures can local and regional governments take to help?
A. I think that first and foremost, people need to know and understand what addiction is, what it feels like, how it manifests when people who are addicted cannot get the drug they need. So, an education campaign in the form of social and print media, town hall meetings, and simply talking about the issues surrounding drug use will help move harm reduction measures closer to reality. Regional and local governments must hear from their constituents that they are in favour of supporting the lives of people who use drugs. This is the only way we can move the problem toward the solutions, move people with substance abuse disorder forward into recovery and treatment.
Recently there was a news item that neighbours bought up a house in their community [in Penticton] to prevent it becoming a treatment centre. This shows a lack of understanding and a lack of willingness to learn. We need to address this kind of thinking.
Many municipalities in BC are independently on the move around this crisis, setting up de facto safe consumption sites. Governments move at a glacial pace, as we know. Thousands of people have died in the meantime. As the federal and provincial governments partner on this crisis, we see lowered barriers to opening safe consumption sites, we see health authorities receiving some funding and training on responding. There is a tremendous amount of work to be done on coordinating the best practices across the province.
Q. A lot of people all over North America initially got hooked on opioids through a legal prescription for pain management, to oxycodone, which is highly addictive. The US and Canada prescribe more opioids per person than any other nation in the world. Is the number of such prescriptions for opioids at least declining—is the medical profession now wiser about issuing such prescriptions? What still needs to change on this front?
A. My son Jordan is one of those statistics. Much of the medical profession has been made aware of the risks of over-prescribing opioids. As of November 1, 2017, over 2,000 clinicians have been reached through 54 seminars across BC to support the implementation of new clinical guidelines for treating opioid use disorder. This has been one of the initiatives of the BC Centre on Substance Use. All new and existing medical personnel should be trained or retrained. This again takes funding and the political will to support and mandate the training.
Q. On Moms Stop the Harm’s website it’s noted that we need to address the reality that three out of four people who die by overdose are men. Why do you think this is and what does it mean in terms of policies?
A. There are so many factors that lead men to use drugs, and to use drugs alone: stigma around drug use, economic pressures, mental health issues, family pressures, trauma. The same set of factors apply to women, but men traditionally take higher risks than women.
The appearance of lethal, illicit fentanyl is what is killing people. Stigma drives people, especially men, to use alone. Thus we find the largest number of overdose deaths are men using alone indoors. It is a tragic circumstance of the war on drug users.
The data being collected on these deaths can help inform anti-stigma campaigning and let us know how to target messaging. It will tell us who and how people will access harm reduction services.
Q. One of the eight keys mentioned on Moms Stop the Harm website is “redefine recovery.” Can you elaborate?
A. Over many years the term “recovery” has come to be associated with abstinence-based treatment for people who are addicted to drugs and alcohol. Abstinence-based recovery works for some, but for the vast majority of people with substance abuse disorder, and over the long term, it has a very low success rate.
Let’s face it, we all want all people with substance abuse disorder to recover. So we are saying, let the term “recovery” include all forms of treatment. We advocate for evidence-based, medically-assisted treatment and therapy for all who need and want it. This means if a person should need and want abstinence-based treatment, they should have it. There is an alternative: The BC Centre on Substance Use, in cooperation with the College of Physicians and Surgeons, have rolled out injectable opioid agonist treatment (iOAT) guidelines. It may not be the end-all answer, but if people with substance use disorder could safely and easily receive the drugs they need to help them recover, they would be much further ahead in recovery.
Recovery is recovery, no matter the pathway.
Q. The toll the crisis is taking on families and communities seems immense. How have you coped and what gives you hope?
A. We use a “soft” statistic to show the impact of an overdose (or drug poisoning) death to illustrate the impact on families. When an overdose death occurs, the number of people potentially impacted in a very tragic way is about 135 (family, extended family, friends, co-workers, health workers, church congregations, etc.). Given that over 4,000 people have died in the past 2 years in Canada from drug poisoning and overdose, that is about 500,000 people affected by preventable deaths. I see that as a profound rent in the fabric of our Canadian culture.
How do I cope? Working towards mitigating the crisis, stopping the deaths and seeing some progress does help to cope. Advocacy for us moms who have lost children is very difficult, as our grief is renewed every time we have a new member join MSTH. The ultimate goal is to have no more preventable drug-related deaths. We still dream, we still hope. Someone once asked me if I do this work for my son. I replied that no, I do this work for your son. That is the truth of it.
Leslie Campbell is the founding editor of Focus Magazine.