Our findings illustrate how rebound episodes were shaped by the complex interplay between individual-level factors and social, structural, and environmental forces operating within the HIV treatment risk environment. Participants had previously achieved viral suppression by maintaining optimal ART adherence, and their accounts emphasized how they had managed or adjusted their living situations, HIV care, ART dispensing arrangements, and drug use to ensure adherence through the development and maintenance of “stability” or regular “routines”. Rebound episodes were associated with disruption of these stable situations and routines, stemming from housing transitions, difficulty managing co-morbid health conditions, as well as changes in drug use and drug scene involvement. In addition, disruptions occurring due to poor relationships with care providers and misunderstandings regarding ART resulted in intentional treatment discontinuation in several cases.
Impacts of housing transitions on ART dispensation and HIV care
For some participants, rebound episodes were temporally associated with changes in housing status and neighbourhood of residence, which negatively impacted HIV care. Housing transitions and neighbourhood relocations were particularly influential in disrupting established HIV care-related routines, and led to difficulty in re-establishing convenient ART dispensing arrangements. For example, Richard (participant #5, White Man, 52 years old) experienced a rebound episode after relocating to a neighbourhood approximately 5 km from where his HIV physician and pharmacy were located. He relied on a motorized wheelchair to travel to pick up his medications and his wheelchair began malfunctioning soon after moving. He was subsequently unable to pick up his HIV medications for more than 3 weeks, leading to his rebound episode.
HIV care and support services are concentrated in Vancouver’s urban core, and some participants experienced reduced access to HIV care, ART medications, and related supports after relocating outside the downtown core. Allen (participant #1, Afro-Canadian Man, 51 years old) experienced a disruption to adherence when he moved from the downtown core to a rural area to undergo addiction treatment at a residential treatment facility. He changed his pharmacy to pick up his monthly supply of ART medications closer to his new residence. Refilling his ART prescription required that he travel a considerable distance, and due to the lack of public transit and the regulations of the treatment facility he was attending, it was sometimes not possible to pick up his ART prescription until weeks after his supply of medication was exhausted. Difficulty picking up his ART medications resulted in non-adherence, which led to his rebound episode. Similar dynamics were evident in the experience of Bernadette (participant #10, Aboriginal Woman, 45 years old), who lived in a supported living residence for HIV positive individuals (including on-site ART dispensation), during the time she displayed viral suppression. Her rebound episode emerged soon after she relocated to a small town outside the city with her boyfriend. This change in residence reduced her access to HIV care and ART-related supports (e.g., daily dispensing), which previously facilitated optimal adherence, leading to non-adherence and, subsequently, her rebound episode. These accounts illustrate the interplay between location of residence and ART dispensing arrangements, and how disruptions associated with relocations can result in prolonged non-adherence and rebound.
Relationships between extreme poverty, drug use, and non-adherence to ART
Regular ongoing illicit drug use was not reported to impede adherence, as many participants maintained viral suppression while continuing to use drugs. However, significant changes in drug use patterns were reported to hinder ability to take medications as prescribed in the context of extreme poverty and constrained opportunities for legal income generation. Participant accounts emphasized how increases in drug use, including episodes of binge use (often following the monthly distribution of social assistance benefits) and intense drug scene participation resulted in non-adherence leading to rebound episodes. Intense drug scene involvement was a key mechanism producing non-adherence, as participants reported that spending large amounts of time generating income (e.g., dealing drugs), and obtaining and using drugs disrupted adherence-related routines by keeping them away from home and their ART medication supply. The impact of these disruptions were exacerbated by various social, structural and environmental conditions related to the local drug scene, including difficulties generating income, the high costs of drugs within an unregulated market, and severe isolation due to a lack of social interactions outside the drug scene. Barriers to managing drug dependency were also evident in participant accounts and related to the impacts of changes in drug use patterns on adherence, including negative perceptions of regulations associated with MMT programs (e.g., observed daily dosing) and the lack of effective pharmacotherapies for stimulant use.
A recurring pattern of drug use binges was cited as playing a key role in producing multiple rebound episodes for Dan (participant #16, White Man, 48 years old), who described sustained binges that would result in multiple weeks of non-adherence. During periods of viral suppression, he reported using drugs in a more moderate manner. Episodes of binge drug use had a profound effect on his adherence due to the time and energy spent obtaining and using drugs. He attributed each of the rebound episodes in his clinical profile to prolonged drug binges:
I went off it [ART] again cause I went on more on [street] drugs […] Each time where I’ve [lost suppression]… I’ve gone off on a binge.
For other participants, intense drug scene involvement and the time spent generating income illegally and using drugs was perceived to negatively impact adherence due to the disruption of regular routines and time spent away from home and supplies of ART medications. Brendan (participant #2, White Man, 41 years old) reported spending large amounts of time in the drug scene to make money to purchase drugs, and then, after using stimulants for a prolonged period (often days), he would take a sleeping pill to “crash”. This resulted in numerous days each month when he would miss taking his ART due to the disruption of his normal routine (often coinciding with the payment of social assistance benefits). Similarly, Don (participant #21, White Man, 48 years old), described how his rebound episode emerged during a time when intense drug scene involvement resulted in an unstable lifestyle, which he contrasted with his stability and routines during periods of viral suppression. Instability stemming from drug scene involvement including illegal income generation (e.g., shoplifting), homelessness and repeated arrests and detentions, and difficulty managing drug dependency precipitated his rebound episode:
I’ve always took my meds [ART], but for a few months there I was a little fucked up […] I wasn’t taking them [ART] responsibly. [I was] stopping and starting …[due to] the erratic lifestyle of like being homeless.
While his adherence was briefly disrupted when incarcerated, he attributed his rebound episode primarily to the interaction of factors stemming from the instability of being homeless and entrenched in the drug scene.
Inadequate care and support for comorbid conditions
Among participants with complex co-morbidities (e.g., mental health issues, chronic pain, opioid dependency), difficulties managing these conditions due to inadequate care and support led to disruptions in their regular routine and ART adherence, which contributed to rebound episodes. For Dave (participant #24, White Man, 49 years old), pain and reduced mobility shaped non-adherence by limiting his ability to pick up ART medications for self-administration. He experienced intense chronic pain from a spinal injury, and reported that his pain management was often inadequate. He had previously been prescribed morphine, which effectively managed his pain, but his physician had become reluctant to continue to provide this medication due to strict prescribing guidelines for opioid analgesics imposed by local medical regulatory body. Prior to his rebound episode, the pain from his spinal injury was unmanaged due to the discontinuation of his morphine prescription, which made it difficult for him to walk and, therefore, travel to his pharmacy to refill his ART prescription. Dave subsequently experienced a period of ART non-adherence lasting more than a month.
Inadequate care for ongoing and emergent mental health conditions was also critical in shaping non-adherence and rebound episodes. For example, Mary (participant #3, Aboriginal Woman, 37 years old) described how non-adherence to medications prescribed for her bipolar disorder often interfered with adherence to ART. Her rebound episode occurred when she was not taking both her “psych meds” and ART medications for a prolonged period because she felt depressed and suicidal. She reported that mental health services in the community did not provide her with adequate support, and she had to be hospitalised to receive care for her bipolar disorder. Meanwhile, because most participants were socially isolated, difficult life events (e.g., child apprehension, death of a family member) often led to serious depression accompanied by increased drug use, ART treatment interruptions, and rebound episodes. For example, Donna (participant #7, Aboriginal Woman, 35 years old) was forced to give up her baby to foster care soon after he was born, which led to deep depression, resulting in increased drug use and non-adherence to ART medications:
I gave him [her son] up [to foster care]. I went onto the streets and started using heavy and got sick [depressed]…And stopped taking my meds [ART].
Although she was engaged with services related to the foster care system, as well as HIV-related care, she did not receive adequate care for her depression, and self-medicated with illicit drugs. Similar dynamics were evident in the experiences of four other participants who reported that the death of family member resulted in depression accompanied by increased drug use. This relatively common sequence of events illustrates how interaction between life events, mental health issues, and changing drug use patterns precipitated rebound episodes among structurally vulnerable PWID who lacked mental health supports and strong support networks.
Difficulty managing opioid dependence, partially due to strict rules governing methadone therapy, resulted in MMT discontinuation and ART non-adherence for one participant. During the time that Laurie (participant #20, Aboriginal Woman, 38 years old) displayed viral suppression, she was receiving take away doses of methadone (“carries”) and daily-observed ART through her pharmacy. She reported being “cut-off” MMT carries when it was discovered that she was injecting her methadone and, since she was opposed to daily-observed methadone dispensation, she discontinued MMT. She subsequently began using large amounts of heroin and diverted methadone to manage her opiate dependence, and selling drugs to generate income. Managing opioid dependence by using illicit opioids rather than receiving MMT reduced her motivation to visit the pharmacy to pick up ART medications, resulting in non-adherence and rebound.
Provider-patient interactions related to ART
Poor communication and interactions with HIV care providers negatively impacted individual adherence, and resulted in non-adherence and intentional treatment discontinuation among several participants. Calvin (participant #18, White Man, 55 years old) described how an intense disagreement with his physician led him to discontinue both ART treatment and MMT, which subsequently resulted in an episode of viral rebound. His physician expressed concerns regarding his adherence based upon reports from support staff at his residence stating that he had not been picking up his medications. He explained to his physician he had indeed been taking ART as prescribed, and that he had a stockpile of medications because he had not started his ART regimen until a month after receiving his first prescription. His physician demanded that he receive maximally assisted treatment/directly observed therapy (MAT/DOT) to address the perceived problem with adherence. He was vehemently opposed to observed therapy because he felt he was capable of being adherent and taking his medication independently:
Calvin: I explained to her what I was doing [adhering to regimen as prescribed by taking stockpiled medications], right… and she didn’t want to hear me. So, I ended up being off the medication [ART] and I got off methadone…
Interviewer: So she really wanted then for you to go every day and take the observed maximally assisted therapy?
Calvin: Exactly! I wasn’t gonna do that, no… Not at my age… I was over fifty years old. I know what I’m doing.
The conflict with his physician caused him to leave care and discontinue ART treatment and MMT. He did not re-initiate ART until 24 months after this discontinuation event and remained off MMT for approximately 6 months, during which time he used heroin to manage his opioid dependence.
Similarly, Shelley (participant #26, Aboriginal Woman, 43 years old) described how she “rebelled” against her physician’s decision to put her onto MAT/DOT against her wishes by not adhering to her ART medication. She positioned observed therapy as paternalistic, emphasizing that she was “not a kid” and was indeed able to adhere to her regimen. She actively resisted her physician’s decision by not attending the MAT/DOT program to take her ART medications, which resulted in her rebound episode. These cases illustrate the impact of physicians’ decisions to have PWID patients receive directly observed therapy against their wishes, which unintentionally led to non-adherence and rebound because participants felt such arrangements were too paternalistic.
Negative interactions with care providers were also influential in the case of Marianne (participant #27, Aboriginal Woman, 41 years old), who was non-adherent for 3 months while incarcerated. Her ART medications were not available until 3 weeks after she arrived at a correctional facility. However, due to her frustration with the inability of institutional health care services to provide her medications, she refused to take her ART, despite awareness of the negative impact that this would have on her HIV treatment. She did not reinitiate ART until she was released to the community, and the 3 months of non-adherence while in correctional custody resulted in her rebound episode:
I didn’t take it [ART]. I did [served] three months and then when I got out, I started taking it again.
While the problems experienced by this participant partially stemmed from a lack of continuity in HIV care when in correctional custody, she reported that poor relationships institutional healthcare providers also led to her decision to intentionally discontinue her ART until she was released from jail.
Local understandings of ART
Social influences and popular understandings of ART influenced participants’ beliefs regarding ART and, in turn, their adherence. Misunderstandings regarding adherence, management of ART resistance, and disease progression precipitated non-adherence to ART, as well as instances where patients intentionally discontinued their ART treatment. For example, Malcolm (participant #23, White Man, 49 years old) reported how ambivalence towards HIV treatment fostered his non-adherence, partially due to the understanding that intense drug use and ART were not compatible. During a period when he was using illicit drugs heavily, he reported low levels of motivation to adhere to ART medications as prescribed and experienced a rebound episode:
You know when you’re not really into it [ART treatment], you don’t [take your medications]. I was still skipping doses and all that.
I wasn’t really honest with myself […] I’d take them just when I thought I’d have to. Right? I had drawer full [of ART doses he had not taken] Fuck the medication. […] I was using fucking almost a half a eight ball [1.75 grams] of heroin a day.
In a number of cases, patients intentionally discontinued their treatment despite awareness that they displayed undetectable viral load measures. Brett (participant #4, White Man, 53 years old) discontinued his ART intentionally due to concerns regarding missed doses, misunderstandings regarding ART resistance, and out-dated ideas regarding best practices in HIV treatment. He enacted a self-imposed treatment interruption because he believed stopping treatment would eliminate the potential for ART resistance and extend the effectiveness of his current ART regimen:
I was on a structured treatment interruption- my own. I had missed enough adherence [doses] so… I went off for a year. And the doctor said why? I said… Instead of building a tolerance [resistance] it’s better if I go off it till I got no tolerance, and then we can put me back on it. So I did my own structured, my own treatment interruption.
Similarly, Eric (participant #12, White Man, 53 years old) believed a treatment interruption might be a good way to prolong the efficacy of his current regimen, as he had begun ART treatment 19 years earlier and was concerned about long-term use of ART. His decision to discontinue ART, undertaken without consultation with his physician, was partially due to encountering information regarding strategic treatment interruptions in an old copy of a newsletter for HIV-positive individuals:
I thought that a drug holiday would help. So I took myself off [ART] for one year and then…the viral load jumped up I took myself back on […] After more study they realized that it’s not good, but by that time I was already off of it so…
This participant’s decision to discontinue treatment was partially shaped by his experiences with early treatment regimens, which influenced his understanding of contemporary therapeutic approaches. These intentional discontinuations occurred after structured treatment interruptions were no longer deemed clinically beneficial, and individual decisions to stop ART medications were not supported by physicians.
A lack of recognition that managing HIV with ART requires lifelong adherence to daily medication regimens reduced willingness to continue ART among some participants, leading to intentional treatment discontinuation. Darla (participant #9, White Woman, 56 years old) described her decision to discontinue ART, emphasising that taking numerous pills every day for years had become unappealing despite awareness that she had achieved viral suppression:
I was undetectable for about two or three years. I just got tired of taking so many pills every day […]my viral load was right down and so I just said “I’m taking a break. I’m not gonna take it [ART] anymore. I’m just on too many pills.” […] It was something I just wanted to do and just kind of feel normal if I don’t have to take these pills every morning when I get up and again at night […] I just get sick of taking them.
Similarly, Elaine (participant #15, White Woman, 50 years old) discontinued treatment when her viral load was undetectable, partially due to the belief that the positive outcomes she was experiencing (e.g., sense of well-being, weight gain) meant that she no longer needed to take ART to manage her HIV:
I just got frustrated with taking them every day […] I started gaining weight and I started feeling good. I thought… “now I can do it on my own. Maybe I didn’t need it [ART].” I just wanted to try to see if I can [live without medication]. But right away I started to crash, and I need the meds. I thought I was doing so good that I probably didn’t [need medication], I probably could do it on my own- I didn’t really need these pills anymore. And it’s not so, cause my body needs them… obviously.