Calgary– October 17-18, 2016,
Edmonton – October 20-21, 2016
Petra Schulz was one of the invited speakers at the conference and presented in a session called “Health’s Side of the Fentanyl Crisis”, together with the Acting Chief Medical Examiner Dr. Elizabeth Brooks-Lim, Chief Medical Officer Dr. Karen Grimsrud, Marlisss Taylor and .Mathew Wong, from the harm reduction program Streetworks.
We lost her youngest child Danny to an accidental Fentanyl overdose in 2014. Danny was 25 years old. Through the lessons learned from my personal experience and by sharing Danny's story I have become an advocate for drug policy reform aimed at reducing the harm associated with substance use. I hope that the expansion of harm reduction services in Alberta and the rest of Canada will leave a legacy in memory of our son. Danny felt strongly about organ donation, now he is donating his story.
What I and other mothers of our network, Moms Stop the Harm, have learned can be summarized in 8 messages.
Danny was in recovery when one more pill, which he thought was a fake OxyContin, but was in fact Fentanyl, took his life two and a half years ago. We did not know about the increased risk in recovery, when the person’s tolerance for the drug is lowered and when they are less informed about the scene and dangerous drugs.
He was one of the early victims, before Fentanyl made the news, and before there were any health warnings. Those came months after Danny died, first from the RCMP and much later from health services.
Danny’s drug dependence started with OxyContin, but he had to switch to street drugs, mostly heroin, when OxyContin was made tamper proof. We can learn at lot from the reformulation of Oxycontin, and the emergence of Fentanyl, Carfentanil and W18. Every time we take a drug away and don’t help those using, we drive them to more dangerous drugs. It is like the person who struggles with OCD and compulsively washes their hands. We can ban one brand of soap after the other, but the compulsion will remain if left untreated.
After Danny died we decided to be open about the cause of his death. We wanted to end the silence and the stigma. Friends and family, his workplace were surprised. Danny did not look like an “addict” - a word I don’t care for much. How does a person who struggles with addiction look like? In most cases, it is an invisible condition. Danny came from a supportive family and he did not grow up to be a substance user. My goal was not to be a harm reduction advocate. I too was once a soccer mom.
Message 1: Overdoes can affect anyone
When Danny died he had been in recovery for a year and a half. He worked as a chef in one of Edmonton’s best restaurants, he lived in a downtown apartment and he had taken a trip to California with his dad.
What worked for Danny was substitution treatment with Methadone combined with counselling, which we paid for privately. The only thing the public health system offered was a list of 12 step groups, that would not have taken him on the methadone. What did not work was the fact that both he and we were keen to have him “drug free” and he did not stay on the Methadone long enough to be stable.
For a while seemed we had the old Danny back, the kid I knew before he became dependant on drugs. On the outside, he looked like a successful young man, but he was struggling.
His addiction started as his way of dealing with his severe social anxiety, but there were other risk factors: A diagnosis with a learning disability as a child, being gay, working in an environment were drug use is prevalent. He told me once that after he took the drug he could just walk into any room and just be himself, and I wondered if being yourself is too much to ask. Should we not help young people like Danny, so that their mental health issue is addressed and they don’t turn to dugs? In our mothers group, almost all the children who died had mental health issues.
Another important risk factor is how the user takes the drug. Danny had progressed to intravenous injection, which has the highest risk of overdose.
Message 2: Know the risk factors
We learned a lot since he died – the missing ingredient for him and for us was harm reduction, which is best kept secret in additions treatment. So much of what is done in the addictions field is based on morals or on societal norms, rather than best practice. Despite the evidence to the contrary the single focus of information for parents and users is to get “clean” - another term I don’t care for much, as people who take drugs are not “dirty. People relapse and we did not learn about potential lifesaving solutions, such as Naloxone and how substitution therapy should work, until it was too late.
I hope you will all carry Naloxone, or if you are not able to carry, at least know how it works. Naloxone does not solve the problem of substance misuse, but our rates of death from overdose would be much worse if it was not available.
Message 3: Harm reduction saves lives
As a society, we need a paradigm shift away from treating substance use as a criminal justice problem, to approaching it as a health and human rights issue.
Our mothers group calls for the decriminalization of personal use and possession of illicit drugs, so people get the help they need. This might a big shift for society, but decriminalizingpossession has been shown to save lives and reduce crime in several European countries, where it is practiced. Since decriminalization in Portugal, rates of drug use have not increased, far fewer people arrested and incarcerated for drugs, more people receive drug treatment, incidence of HIV/AIDS and drug-induced deaths have been significantly reduced.
Locking people up for using drugs causes tremendous harm to the individuals, their families and to society, while doing nothing to help those who need and want treatment. And it does nothing to reducing the supply of illicit drugs.
Message 4: Support, Don’t punish.
Danny was as safety conscious as he could be, doing something very dangerous. He always bought new needles, but that day he was home alone, so nobody could assist him when he overdosed. I can’t tell you how many times I imagine myself finding him in time with a Naloxone kit in my purse. I can visualize what I would have done, but never got a chance to do.
Message 5: Do not do drugs alone, have a safe observer
These rules are more important since the arrival of new and more toxic drugs, such as Fentanyl, Carfentanil and W18, that have changed the landscape of drug use. Before Fentanyl, the people were most at risk were people like Danny who are dependant on opioids.
It is a well-established fact that most users are not addicted to the drugs they take and that most people who use, never develop a dependence. For those individuals, the situation has drastically changed with toxic synthetic opioids being mixed into recreational drugs. These occasional users are also less educated about the risk. Human nature being what it is there will always be people who take drugs. What we need are good tools and sound education, especially for young people, not only on the dangers of drugs, but also on staying safe, much like we teach about safe sex and drinking and driving.
Message 6: Know what an overdose looks like - recognize the signs of an overdose, know how to respond. Have a Naloxone kit.
I do not need to explain to this group how important timely intervention is when someone stops breathing. I know two mothers whose children would be here today if their friends would have called 911. We need to pass Bill C-224 Good Samaritan Drug Overdose Act (currently at the report stage - House) so no one is charged or arrested when someone overdoses.
Message7: Don’t Run, call 911.
People do recover from substance use if we use the right treatment approaches, combined with harm reduction measures to keep people alive. Some people simply outgrow their dependence when they mature or life circumstance changes.
Message 7: Recovery is possible
Danny came close to that point. He had dreams of joining the armed forces. He wanted to present a cooking workshop at Camp firefly, a summer camp for LGBTQ youth that he had once attended. He wanted to talk to his head chef about creating job opportunities for marginalized youth, and he wanted to plant more fruit trees at our cottage.
He is on our mind every day and I try to think about the loving, caring son he was and the great meals he cooked. I can’t help to also think about how different the outcome could have been.
Message 8: To me as a mom harm reduction is simple – to keep them alive so they can make a better decision on another day.