Participants ranged in age from 27 to 60, with an average age of 42. A majority were White, with a minority of participants identifying as Indigenous. All participants were low-income and several had less than high school education. Each participant had been living with at least one mental or physical illness and most participants had multiple chronic conditions, including PTSD and/or chronic pain. Nearly all participants were taking at least one non-opioid medication, with some concurrently taking five or more medications.
The most commonly used opioid reported by participants was heroin, followed by Percocet, Oxycontin, and morphine. Participants also mentioned other opioids including Tylenol 3’s, codeine, fentanyl, methadone, hydromorphone, Dilaudid, or unspecified pills. The majority of participants used more than one type of opioid with many having used three or more in their lifetime. Participants reported that cocaine and crack were the most common substances combined with opioids, followed by alcohol. The most frequently cited reasons for combining opioids with other substances was to experience new sensations, to come down from a high, manage pain, or numb negative emotions. Nearly all participants knew at least one person who had experienced an opioid overdose.
Knowledge and experience with Naloxone was influenced by opioid use patterns and pathways
Each participant described a unique initiation into opioid use, with many experiencing more than one extended phase of opioid use over the course of their lives. Some participants experienced an initial period of prescription opioid use for illness or injury, followed by a phase of injecting heroin. For instance, one participant was prescribed Percocet in her mid-20’s, ceased use, then began injecting heroin in her late 20’s with a partner. Other participants used heroin and opioids recreationally and later were prescribed these drugs to address health conditions; one participant had smoked heroin while younger, then was prescribed opioids in middle age for degenerative disc disease. Participants who experienced only one phase of opioid use were initiated through prescriptions, pressure from romantic partners, or using with friends.
Participant awareness of and possession of naloxone appeared to be influenced by how recently they had used an opioid and the type used. Many participants were using opioids at the time of study or during the preceding year, and most participants with recent opioid use were aware of naloxone. Only one participant who had recently used opioids reported not ever having a naloxone kit; this participant had taken a low-dose prescription opioid and did not display a pattern of recent illicit use. All other participants engaged in current or recent opioid use, and aware of naloxone or in possession of it, had been using opioids illicitly, primarily heroin. Most participants engaged in illicit opioid use since the 2016 down-scheduling of naloxone had received a naloxone dose, though not always during an opioid overdose. Many were knowledgeable of both injectable and nasal forms of naloxone and had used naloxone on another person at least once.
Conversely, participants not engaged in recent illicit opioid use at the time of interview, who in some cases had not used opioids in several years, either did not know about naloxone prior to study recruitment, or had only heard of it in passing, such as on the news, without pursuing additional training or knowledge. No one in this group had administered naloxone to another person, and when asked, many were not interested in acquiring a kit. One participant who had not used opioids in more than a year at the time of interview had previously been prescribed Narcan but had not used it.
Participants engaged in illicit opioid use since 2016 described obtaining multiple naloxone kits and information from a variety of sources: primarily friends, partners, community or public health services, methadone clinics, and pharmacies. Some participants turned to the news or online research for additional information on naloxone. No participants reported initially learning about naloxone at a pharmacy. The decision to seek out naloxone training was often a product of the initial awareness of naloxone they had gained from peers:
"I lived in a house where a lot of people were using IV drugs. A lot of people came there to use IV drugs, so- and nobody was being careful. So, I took it upon myself that I always had- I was the one to call [public health service] to get clean kits, fits, everything.” (Participant 6)
Despite a lack of knowledge of naloxone, a few participants with earlier-life heroin use who were later prescribed opioids for medical reasons consciously limited their prescription use. These participants tapered off their prescriptions or avoided taking them unless absolutely necessary, citing a fear of becoming addicted, the desire to pursue Indigenous spiritual and mindfulness-based pain management practices, and side effects as reasons for their self-imposed restrictions. These participants had not experienced accidental opioid overdoses (though one had intentionally overdosed in the past, and one had intentionally overdosed on a non-opioid) and did not express interest in acquiring naloxone kits.
Participants who had described recent heroin use, regardless of whether they had been prescribed opioids in the past, had experienced accidental overdoses prior to the interview. Although naloxone did appear to be reaching these participants, who were in need of it, the ever-present danger of overdose loomed:
"I went to the pharmacy to fill my medication and the day before I had- I ran into a guy overdosing o-on the street, and a week before that a girl overdosed on the TTC and I- at which point I didn’t have any of the- naloxone or anything and I just realized that, whether I want to see an epidemic or not, it is happening in my cities … so … I just picked one up." (Participant 5)
Participant opioid and naloxone use experiences influenced one another, with those engaged in more recent (post-2016) illicit opioid use being the most knowledgeable of and experienced with naloxone. Such participants tended to seek out naloxone knowledge as a means of mitigating their overdose risks, with some relying on their informal social networks to access and learn about naloxone. Participants who had used illicit opioids in the past and then were later prescribed opioids for medical reasons were not very aware of nor interested in naloxone kits, even if they had overdosed in the past, but consciously limited their use of medication in other ways. These differences in naloxone usage and knowledge across specific opioid initiation and use pathways were consistently apparent in the data.
The effects and dosage form of Naloxone may affect ease of use
Injectable naloxone kits were available in Ontario prior to Narcan, the nasal spray form. These kits, the size of a large wallet, contain two ampoules of naloxone, two syringes, gloves, alcohol swabs, and instructions. Nearly all participants were supportive of naloxone use, but when asked what they found positive or negative about the kits, one participant said their bulkiness is an impediment to women carrying them:
"… if they don’t fit in our purse … chances are it’s gonna be sitting at home, somewhere in a safe spot but not where you need to have it … like a regular epi pen like keep it in your tampon container in your makeup bag or in your purse and, it’d be a lot more effective." (Participant 5).
Multiple participants drew comparisons between naloxone and epi-pens as a fast-acting, portable emergency medicine. When asked, participants experienced with naloxone use were inclined to prefer the nasal spray form over injectable forms due to ease of set-up, as well as fear of needles or discomfort surrounding needle size.
One participant described severe naloxone-induced withdrawal after an overdose. The distressing withdrawal symptoms made her less inclined to want to use naloxone in the future, and she expressed a need for greater support for people immediately post-overdose:
"… it brings you out of your overdose, but at the same time, you get extremely sick, you know? Like it takes out every, every opiate in your body and you’re basically in withdrawal and then like what if- what if that was the last of your money or your dope and now you’re gonna have to go find something else and- and you’re so sick that you don’t even want to do anything, you know? And nobody helps." (Participant 3)
Another study participant, who supported the above participant through her overdose, independently shared her belief that health officials and authorities lack awareness of naloxone’s effects and how to best manage them:
"I believe doctors, police officers, jail people, they are not knowledgeable enough about how this drug [naloxone] affects people and what happens to them when they go through withdrawal." (Participant 2)
The dosage and dosage form of naloxone, as well as its side effects, can at times cause anxiety, discomfort, or even distress in the people using it. The portability of kits also affects ease of use. While nearly all participants felt positive about naloxone use, these issues may render it more difficult for naloxone to be effective in an overdose situation.
Gendered violence, alienation, stigma, and the role of social support
When asked if they had experienced gender-based discrimination when accessing health, naloxone, or harm reduction services, most participants answered no; however, one participant highlighted difficulties resulting from a lack of services focused on women:
"… when I got in trouble, and got arrested, the only place in the world that could help me was here… And, it was like there’s not enough places out there for women. And, prior to me, I was screamin’ out for help.” (Participant 4)
Even though most participants answered that they did not experience discrimination in harm reduction contexts, they did report conflicted self-perceptions over their opioid use, strained family relationships, social isolation, and instances of violence against women who use opioids. Participant responses painted a sense of collective alienation with regard to their roles as women and their place in society:
“… I guess I feel that women are supposed to have their shit more together or we’re expected to be of more moral and more, higher standards than- do you know what I mean? … Yeah, the motherly figure, right? Like what the hell’s a mom doing shooting up or asking for naloxone, you know?” (Participant 1)
This experience of stigma was reflected in other participants’ stories of fractured relationships in association with their opioid use:
“I had a high paying job. I drove a really nice car. I owned a home. I was a single parent to my daughters. And one by one, I lost, absolutely everything.” (Participant 2)
“My daughter, my wife. I’d pick on them, the cocaine would pick on them, the Oxys- or the opiates would pick on them. And, when I’d be around them I’d be miserable.” (Participant 4)
However, these negative self-images were not uniform across the study participants; one participant described her catharsis when her mother was ultimately supportive of her recovery:
“I don’t know how it came out. We were talking, then it went from talking, to yelling, to me screaming and crying “I’m a fuckin’ IV drug user!” and my mom’s like “I’m not understanding!” and, I’m like “I SHOOT NEEDLES IN MY ARM!!” and she was like- then you know, then she broke down with me and then she became my biggest supporter.” (Participant 1).
The social lives and dynamics of participants were deeply affected by their opioid usage. Some participants avoided disclosing their opioid use to others but felt as though they would inevitably be found out. Others described how social pressures from opioid-using friends or intimate partners either initiated or perpetuated their opioid use. Multiple participants described a shift in opioid use over time; from using opioids with others, such as at parties, towards using opioids in smaller groups or alone. Some participants explained this shift as a result of a lack of trust in people who use drugs, a desire to keep drugs for themselves, or a sense they would be judged for how much they were using. Self-stigma and stigma towards others who use opioids did, in some cases, exacerbate the alienation felt by participants, some to a point where they avoided connections with other people who use opioids.
Participants described two instances where stigma against women who use opioids was so severe as to result in violence. One involved an incident on public transport:
"…there was this girl, front of the bus, clearly she was not drunk, she was OD’ing you know what I mean? Like, all the signs were there. The bus driver kicked her. Then he kicked her again. Then he said “Hey- hey you, you damn drunk! You’ve got to get up off my bus.” I said “She’s not drunk. You need to phone 911.” He’s like “How do you know?” I was like “Cause I’m a junkie you asshole”.” (Participant 1)
Another participant recounted a violent altercation with emergency and hospital personnel after her partner had suffered a non-opioid overdose:
“As soon as they [medical staff] Narcan’d her, w-well- whatever you call it- all the drugs came out of her system so as soon as she went through- through- with this- what do you call that, with-withdrawal. Yeah, so she wanted to leave, right away, to go and get high. And they wouldn’t let her go, and so she started like- flipping out and. They [personnel unclear] tied her down, they beat her … she had bruises on her face, everything.” (Participant 3)
Participants and those around them were subject to social alienation, rejection from past support networks, and dangerous situations. Despite these conditions, participants did not feel discriminated against while accessing harm reduction services, and some participants benefited greatly from the continued support of their families.
Inadequate government response
In the words of one participant, the Canadian government’s response to the opioid crisis was “kind of disgusting.” (Participant 2). Participants felt that the response was too slow, and reflected negative public sentiment surrounding opioid use, despite the fact that nearly all participants felt the overdose crisis should be declared a public health emergency. They felt that a lack of desire to help, rather than inability to help, was making the crisis worse:
"We live in Canada. We have access to free healthcare. And yet there’s people that are suffering. Even for rehab, you know? W-we have to wait and go on waiting lists, and we have to cut through all this red tape. It’s bullshit. Absolute bullshit. Somebody wants help, they want help that day." (Participant 2)
"If they were so concerned, why didn’t they do it a while ago? Right? Why did people have to die? And a public outcry, for things to change around?" (Participant 8).
“They’re not down you know working with people, face-to-face, interacting and seeing how many people are being affected … they’re very detached.” (Participant 10)
Participants were nervous that not enough was being done about fentanyl in the drug supply. They felt that a lack of adequate opioid addiction treatment services was resulting in unanswered pleas for help and even deaths of people they knew:
“They’re not doing enough at all, they’re not doing enough. My- I had a girlfriend … her nephew passed away waiting for a bed to get in treatment.” (Participant 1).
One participant, who tried methadone treatment, returned to heroin as she felt the dose was too low. She experienced severe withdrawal symptoms and felt she had no support:
“They start you off at a really low dose, and because I was using such high doses of heroin that I would still feel sick like I would still be like vomiting, my legs would still ache.” (Participant 3)
Participants described how economic issues, when unaddressed by the government, could perpetuate opioid use and keep people at risk of overdose. One topic that came up spontaneously from multiple participants were concerns over housing availability and pricing in the Greater Toronto Area. Nearly all participants were in precarious housing situations with limited incomes, giving them a very personal insight on this issue:
“I think the number one problem with the opioid crisis is that, a lot of it affects homeless people and … they can get better rehab but we put them back on the streets with the same problems in the same situations, they’re gonna go to what’s known to them and that’s the drugs." (Participant 5)
"These people don’t necessarily wanna live on the street, but there’s nowhere else to go, for them. With disability you only get so much money, and you can’t afford a house or an apartment, because the prices in Toronto’re skyrocketing … you can’t get a- a basement apartment under 800. One-bedroom. A bachelor’s! Like it’s ridiculous. How do you live? Where do you live? … I was shocked to hear yesterday, since the beginning of December, 70 people died on the streets so far … I just think the lower class is getting’ rubbed into the ground now.” (Participant 4)
Participants praised the Moss Park initiative, an overdose prevention site established by activists and peers, in the months before officially sanctioned sites began opening in Toronto. Participants also expressed gratitude for government approval of safe injection sites, which began to open while interviews were taking place:
"I think it’s amazing that they have safe sites. Where I come from that’s not an option. Like I said, drug use is very behind closed doors… I think Toronto’s taking a good approach to having safe sites. Not only do people use there, they feel safe there.” (Participant 1)
When asked about the government’s response to the opioid crisis, none of the participants spoke to the federal schedule change in naloxone. Their priorities lay with the ongoing, unaddressed structural causes of the epidemic (e.g., the housing crisis, perceived stigma, and a dearth of opioid management services) and the lack of motivation by government officials to address the issue in a reasonable time frame or listen to those who are suffering most.
Women who use opioids are not a monolith, and have unique needs and preferences
While participants faced many common structural issues such as economic and housing precarity, opioid-specific issues such as social stigma, and overdose risks, each had their own views, preferences, and needs when it came to opioid policy. Participants expressed a variety of opinions on appropriate personnel for emergency overdose responses, legalization of illicit opioids, and how they chose to move on from, cope with, or manage their opioid use.
Participants were asked whether they agreed with fire services, police services, and paramedics carrying naloxone. Most felt all responders should carry naloxone, and some even went so far as to say they should be readily available in other public spaces as well.
“Everyone! Everyone should be carrying them, you know what I mean?! They should be in restaurants” (Participant 1)
Other participants were unsure about police officers carrying naloxone, believing what they consider the punishment-oriented ethos of law enforcement to be at odds with helping people whose drug use is criminalized. One Indigenous participant reported repeated negative experiences with police that made her suspicious of their ability to deliver appropriate help to people suffering from overdose, and, additionally, believed paramedics overuse naloxone:
“Personally I don’t give- don’t think cops give a fuck...I’ve dealt with them before, they don’t give a fuck. I’ve been dealing with them since I was 12….I just think they would let somebody die whereas, I dunno the ambulance... my partner had something happen to her and it had nothing to do with anything to do with drugs or anything and they Narcan’d her...They are not properly trained...I think they overuse it.” (Participant 3)
While some women who use opioids are accepting of the possibility of having naloxone administered by police, others felt this would not be desirable, especially if they feel their overdose will be punished or treated with indifference.
Participants expressed a wide range of opinions on opioid legalization, framed as which options would best protect others from overdose. For some, this meant supporting current restrictions on highly potent opioids like heroin, even if they had used them themselves. Some viewed the prospect of legalizing all opioids to be a safety measure that would reduce stigma and ensure patients know precisely which drugs they are using:
"I think drugs should be legal all the way around. I think, or- have it regulated. Like there’s a European country where people go shoot up pharmaceutical grade heroin and they’ve done tests that, you know the dr- the crime has gone down in that area and I think they should do the same thing here because we’re in an epidemic right now, it’s bad." (Participant 6).
Other participants were torn on the best approach to legalization; they acknowledged concerns related to opioid misuse, while also stressing their importance in pain management:
“I’m torn because I really believe in the decriminalization and legalization of pot. I don’t think opioids should be legalized for anybody. However, I feel like it’s really being a blurred line … I feel like sometimes it’s harder for people who actually need that to help with their pain.” (Participant 5).
Where participants varied in initiation to opioids and use patterns, so too did they vary in how they chose to process, manage, or in some cases cease, their opioid use. A participant, who identified as Indigenous and two-spirit, felt her opioid use had been in conflict with her beliefs, and eventually ceased taking her prescription:
“…I’m really spiritual, I follow my ceremonies and stuff. So it- I don’t feel- I would be a hypocrite [if I continued to take opioids], you know?” (Participant 8)
One participant expressed a positive view of her opioid use in the face of multiple chronic illnesses, explaining how opioids helped her to live a more normal life:
“Oh! I could run, I could jump, I could do what I wanted to do!” (Participant 4).
An older participant acknowledged the negative impact her opioid use had on her life, but explained how she had come to accept the way her experiences had shaped her life:
“…it’s like a waste of my life kind of thing you know but without that experience I wouldn’t be the person I am now. You know what I mean?” (Participant 7)
Women who use opioids face many common struggles, such as stigma and isolation, health difficulties, precarious housing, and a government that has been slow to mobilize resources to combat the overdose epidemic. Their individual preferences with regard to emergency overdose response and legalization of high-potency opioids vary dramatically, revealing diverse expectations, and not adhering to any given stereotypes surrounding opioid use. Whether participants had chosen to continue or stop taking opioids also varied based on their beliefs, their access to addiction management services, and their personal circumstances.