A summary of demographics is given in Table 1 and a summary of drugs injected is listed in Table 2. Briefly, of the 32 PWID interviewed, the mean age was 40.3 years (SD 8.5 years). A total of 56.3% of the participants were male, 9.4% Black, 40.6% Hispanic, 21.8% White, 18.8% multiracial, 9.4% did not specify race/ethnicity; 50% had a high school education or less, 34.3% had greater than high school education, 15.6% did not specify their educational attainment. Participants indicated injecting stimulants, opioids, or both: 34.4% injected powder cocaine, 34.4% injected crack cocaine, 34.4% injected methamphetamine, 75% injected heroin, and 18.8% injected other opioids.
Table 1 Demographics of PWID participants (n = 32) Table 2 Drugs injected by PWID participants in the last year* Drug use stigma, in many ways, structured the healthcare experiences of PWID in this study. The majority of participants (78.1%) reported experiencing at least one form of stigma in a prior healthcare experience. The following themes were identified: (1) enacted, (2) anticipated, and (3) internalized drug use stigma. Enacted drug use stigma in hospitals and clinics, which contributed to the development of anticipated drug use stigma. Participants oftentimes explicitly attributed their stigmatizing experiences in healthcare environments to their drug use status (i.e., as opposed to their general appearance and behavior). Although we focused on all stigma mechanisms, we found only a few examples of internalized drug use stigma in our sample. A third theme emerged of participants articulating a feeling or attitude related to internalized drug use stigma—they often countered it with narratives of resistance and/or self-value. We attribute this dynamic to the positive experiences with the SSP which PWID reported. In the following sections, we illustrate each theme with quotes that highlight PWIDs’ experiences and perspectives.
Enacted drug use stigma
Of the 32 participants, 23 (71.9%) reported some form of enacted drug use stigma including, but not limited to, discrimination (i.e., being treated negatively as a reaction to injection drug use status), and dismissive attitudes of providers at hospitals and clinics. Many participants reported direct instances in which a healthcare practitioner used language that was hurtful or had a judgmental demeanor which contributed to loss of self-worth and dignity. These participants associated poor treatment specifically to their injection drug use status. For example, when describing a consultation at a local hospital, Sophia (female, 30) explained a visit with a physician at a local outpatient clinic for a knee injury that she sustained 2 months prior. Her entire interaction with the physician changed as soon as her track marks were exposed:
Sophia: Then I waited two months and I just did a walk-in and when I met the doctor, everything was fine. As soon as I took off my coat for her to see, that was it. She went from being super nice, referring me here, to okay, maybe you should go to the emergency room…the whole entire face changed, the smile, the whole mood.
Interviewer: Because she could see your track marks is what you’re saying?
Sophia: Yeah.
Sophia attributed the recommended emergency room evaluation to the track marks (i.e., physical evidence of her injection drug use) on her body. As prior research has shown, track marks are a physical attribute that oftentimes lead to stigmatizing perspectives and behavior [24, 25]. Sophia later said that she felt insulted and devalued after the physician, with whom she had a pleasant rapport in the beginning, dismissed her, and instead recommended that she be evaluated at the emergency room.
Likewise, a number of participants described times where they felt insulted and/or disrespected by healthcare provider comments they had overheard. Carla (female, 41) recounts a time when she went into the emergency department seeking care for a persistent cough. Carla explains that she had overheard a loud discussion between providers that made her feel stigmatized and angry. She said:
I overheard them when I was in the ER, right before I was admitted last time for pneumonia. One of the doctors that was making a decision on what medication to give me said, ‘Well, I don’t think we have to worry about giving her too many benzos, look at everything she’s on.’ I’m overhearing this, and I’m like ‘Okay, you know that I can hear what you’re saying.
Continuing, Carla said that she was convinced it was her status as a drug user which contributed to the response she had received in the emergency department. Carla details a subsequent encounter at the same hospital. She had been admitted following a fall where she sustained significant leg trauma. Carla describes intense pain and difficulty moving around after having extensive reconstructive surgery. She reported that hospital staff insinuated she was injecting while in the hospital. Because of the perceived stigma experienced, Carla left that particular hospital soon after:
I mean, they accused me of using [drugs] while I was in the hospital. I was like, ‘How would I even…’ I don’t know. I didn’t even want to get into that. I transferred to another hospital right after that.
Overall, such experiences of drug use stigma from healthcare providers, often in emergency departments and the broader healthcare system, were prevalent and cause for participants to discontinue treatment or otherwise disengage with the provider.
Carla’s experience was shared among other participants who also described instances in which healthcare staff treated them differently because of their drug use. Many felt victimized, judged, and ignored in a time where they looked toward medical professionals for help. These experiences fostered apprehension about seeking future care. For example, Lucas (male, 35) explained the following occurrence during a hospitalization for opioid withdrawal, in which his complaints were dismissed as drug-seeking behavior:
You know, people tend to look at you in a certain way. Some people just stopped talking to you. Some people will just ignore you and some people will just step away from you. Well, it’s happened with the nurses. One time I was sick, and by me just being sick, they [nurses] stopped attending to me…
Maria (female, 42) framed drug use stigma as a major reason why PWID have stopped attending a local hospital-based methadone clinic. She gave her response to the enacted drug use stigma that she faced, and summarized the dehumanizing experience of being labeled as a drug user. Maria explained:
They look at us like junkies, but you know what? This junkie right here bleeds the way you bleed, have feeling the way you have feelings, love the way you love, hate the hate you hate, hold grudges the way you hold grudges. I walk the same way you walk. What’s the difference between your love and my love?…They’re [healthcare providers] so judgmental that they would literally come out and speak about you behind your back.
Below, we discuss how enacted drug use stigma leads PWID to be hesitant about seeking healthcare services (i.e., anticipated stigma).
Anticipated drug use stigma
Of the 32 participants, 19 (59.4%) expressed some form of fear of being stigmatized or discriminated against as a result of the PWID label. In many cases, this fear led to avoidance of medical settings and providers. Francisco (male, 48) explained how previous enacted drug use stigma contributed to the anticipated stigma. He related an experience with a physician who immediately dismissed his complaints of a new-onset skin condition as drug-related, and refused to listen to the Francisco’s explanation and history. As a direct result, Francisco formed a negative perception of healthcare providers and explained that he would be reluctant to seek care in the future for fear of how he would be treated. Francisco said:
I caught scabies going to that shelter…so I used to tell the doctor. He tried to say it was the coke [cocaine]. No, the coke don’t get me like that. I’ve been doing coke for many years. Ever since I went to the shelter that’s when this rash started happening, so I’m trying to explain it to him. He’s like ‘No, it can’t be. There’s no such thing.’…But ever since then, I lost a little confidence in doctors, to be honest.
Isabella (female, 25) described feeling uncomfortable returning to her usual doctor after the physician stereotyped the appearance of a drug user and methadone maintenance therapy patient. Isabella felt stigmatized, uncomfortable, and unwilling to seek future care unless she had a true emergency because she did not want to feel devalued as a result of her injection drug use status or being in a methadone maintenance therapy program. She said:
They [physician] just start asking different questions. ‘Oh, how did that [injection drug use] come about? How did it feel like? Why? What?’ They treat you differently. ‘Well, you don’t look like the type that would usually do that.’ Well, what does that type look like? And I’m just like I’m not here for that, dude. If I don't have to even go there…I don’t.
Furthermore, while speaking about previous experiences with overdoses, Manny (male, 29) described that in the past, he had been stigmatized because of his drug use in emergency departments, and as a result, emphasized his refusal to seek medical care because of how he anticipated he would be treated by providers in the future. Manny said:
It’s different out there, man. It’s just everything’s different out there. I don’t know how to explain it. The whole aura, the way that people look at us addicts as different. You get treated bad. I’ve never been to a hospital out here for an overdose. In the hospital, I refuse to go…You definitely going to get treated differently like if you’re a drug user
Kevin (male, 43) shared the same sentiment. He had the perception that physicians have a purposefully stigmatizing attitude toward PWID. He described not seeking care because physicians will not be of help:
Interviewer: Do you think they treat people that use drugs differently?
Kevin: Yes.
Interviewer: Say more about that, what do you mean?
Kevin: Doctors look at it like for drug users, drugs are the only cure. A doctor don’t have nothing to offer an addict.
Anticipated drug use stigma was frequently attributed to previously experienced drug use stigma such as discrimination against PWID or dismissive attitudes of providers. Interestingly, the majority of participants did not report feelings of internalized drug use stigma. This is likely because of the positive experiences PWID reported at SSPs.
Positive healthcare engagement at SSPs and resistance to internalized drug use stigma
Of the 32 participants, 20 (62.5%) reported positive (i.e., non-stigmatizing, comfortable, and accessible) experiences in terms of medical care at SSPs, particularly those services offered at the partner SSP where interviews took place. Some participants reported occasional conflict at SSPs with other clients, but in terms of accessing medical care, responses were overwhelmingly positive. PWID described the SSP as central to their daily lives—many came for the meals, used on-site technology including computers, developed social networks through group sessions, and received sterile injection equipment and medical care including HIV/HCV testing, on-site HCV treatment, and mental health counseling. The SSP oftentimes fostered self-worth, a counter-narrative to the drug use stigma experienced in hospitals and clinics. Many medical providers at SSPs had strong ties to the community and many nonmedical staff (i.e., counselors, social workers, support staff) shared lived experiences with PWID clients including previous substance use. As a result, participants described the staff, including medical and nonmedical workers, as non-judgmental, understanding, and accommodating, which made them feel more comfortable accessing and continuing care in the SSP setting. In particular, participants reported using the SSP where interviews were taking place for HCV and HIV testing and treatment.
Carla, who reported several previous instances of drug use stigma at a local hospital, spoke about how both she and her husband were able to get tested for HCV at the SSP. Although it was found upon re-testing that Carla had cleared the HCV, her husband was diagnosed with HCV and was offered treatment at the SSP. She emphasized the SSP environment had been accessible and non-stigmatizing, and that she would like to get involved in other services offered such as peer groups at the SSP because of the positive atmosphere. Carla said:
Carla: They’ve helped tremendously, especially with having clean needles. I did have hepatitis C. I was going to get treatment and they said ‘you no longer have it,’ so it was awesome.
Interviewer: You did the test right here?
Carla: Yeah. My husband still has it. He’s getting treatment.
Interviewer: Does he come here too?
Carla. Yeah…I’m grateful that there’s a place to come and get clean needles, things like that.
Kira (female, 41) contrasted the non-stigmatizing attitudes of providers in this environment with those of providers in the larger hospital/clinic systems. She says that the SSP environment makes PWID feel safe, and that it would be an accessible and effective place to access medical care. Kira said:
I feel like I’m not being judged here and things like that. A lot of times people avoid hospital settings for whatever reason, whether they’re scared of doctors or they just don’t want to know…they just shut down. I think in a place like this [SSP], they leave themselves open.
Francisco summarized many PWID’s opinion about using SSPs instead of other healthcare settings when he said:
They know where we’re coming from. They should build more places like this.
Francisco recognized that the accepting environment of his local SSP and the absence of enacted drug use stigma lessened PWIDs’ anticipated sigma and therefore minimized their fear and reluctance to seek care at these facilities.