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. Author manuscript; available in PMC: 2022 May 3.
Published in final edited form as: Subst Use Misuse. 2021 May 3;56(8):1137–1143. doi: 10.1080/10826084.2021.1908360

“The Doctor Says You Cannot Have [Buprenorphine]” Autonomy and Use of Prescribed or Non-prescribed Buprenorphine

Benjamin T Hayes a,*, Andrea Jakubowski a, Christine Fitzsimmons b, Billy Garcia c, Franklin Ramirez b, Aaron D Fox a
PMCID: PMC8754088  NIHMSID: NIHMS1766815  PMID: 33939937

Abstract

Background:

People may overcome barriers to professional buprenorphine treatment by using non-prescribed buprenorphine (NPB) to manage opioid use disorder (OUD). Little is known about how people perceive NPB differently than formal treatment. This qualitative study investigated how and why people use NPB as an alternative to formal treatment.

Methods:

In-depth, semi-structured interviews were conducted with participants of harm reduction agencies (N = 22) who had used buprenorphine. Investigators independently coded transcribed interviews, generating themes through iterative reading and analysis of transcripts.

Results:

Three main factors drove decisions about prescribed and non-prescribed buprenorphine use: 1) autonomy; 2) treatment goals; and 3) negative early experiences with NPB. An overarching theme from our analysis was that participants valued autonomy in seeking to control their substance use. NPB was a valuable tool towards this goal and professional OUD treatment could impede autonomy. Participants mostly used NPB to “self-manage” OUD symptoms. Many participants had concerns about long-term buprenorphine treatment and instead used NPB over short periods of time. Several participants also reported negative experiences with NPB, including symptoms of withdrawal, which then deterred them from seeking out professional treatment.

Conclusions:

These results support prior studies showing that people use NPB to self-manage withdrawal symptoms and to reduce use of illicit opioids. Despite these benefits, participants focused on short-term goals and negative consequences were common. Increasing buprenorphine treatment engagement may require attention to patients’ sense of autonomy, and also assurance that long-term treatment is safe, effective, and reliably accessible.

Introduction

Buprenorphine was approved for opioid use disorder (OUD) treatment by the United States Food and Drug Administration in 2002 (McCormick, 2002) with the goal of increasing access to evidence-based treatment. Unlike methadone treatment, which can only be provided for OUD at federally regulated opioid treatment programs, buprenorphine regulations allow for treatment in general office-based settings. Buprenorphine prescriptions are filled at community pharmacies and can include refills (Substance Abuse and Mental Health Services Administration, 2020). However, after nearly two decades, a substantial OUD treatment gap remains where only a small fraction of those who needed OUD treatment receive it annually (Jones et al., 2015).

Barriers to starting buprenorphine treatment include provider availability, costs, and access to health care services in general (Duncan et al., 2015). Non-white individuals and people with public insurance are less likely to receive buprenorphine treatment than whites or those with private insurance (Lagisetty et al., 2019; Rhee & Rosenheck, 2019). Even when treatment is available, people with substance use disorder (SUD) may struggle with identifying treatment providers, long waits, or facing potential stigma of clinic staff (Ross et al., 2015).

Remaining in buprenorphine treatment can also be challenging. Patients often must follow rigid programmatic rules to receive prescriptions (Kourounis et al., 2016; Ross et al., 2015). A common practice in the US is to mandate counseling or 12-step program participation, and patients may be discharged for not attending these sessions. (Martin et al., 2018). Good clinical practice typically includes urine toxicology testing, focused counseling, and referrals to higher levels of care for ongoing substance use (LaBelle et al., 2018); however, not all patients are ready or able to adhere to these policies.

Buprenorphine is also increasingly available outside of clinical settings, meaning that people buy, trade, or are given “diverted” or “non-prescribed buprenorphine (NPB)” without engaging in a treatment program (Lofwall & Walsh, 2014). Existing evidence suggests that people primarily use NPB for managing withdrawal symptoms or reducing use of other opioids (Chilcoat et al., 2019). Studies also demonstrate an association between barriers to professional buprenorphine treatment and NPB use (Fox et al., 2015). If people use NPB to self-manage their OUD because of barriers to professional treatment, a logical extension would be that expanding access to treatment would reduce NPB when the unmet need is filled. However, despite the plausible link between treatment barriers and NPB use, people with OUD may not find professional treatment models as a desirable substitute for NPB. Prior studies have established some reasons why people use NPB, but the question remains, if people are using NPB to “self-treat” their OUD, then why would they continue using NPB when professional buprenorphine treatment is more readily available.

The objective of this qualitative study was to investigate how people make decisions regarding prescribed and non-prescribed buprenorphine use in an urban setting with high availability of professional buprenorphine treatment. We sought to understand the experiences, beliefs, and attitudes of people using NPB, patterns of NPB use, and attitudes toward professional buprenorphine treatment, with the goal of informing more patient-centered buprenorphine care models.

Materials and Methods

Study design and participant selection

Between August 2018 and August 2019, we conducted in-depth, semi-structured interviews with people with OUD at two harm reduction agencies (HRAs) in New York City. The study was approved by the Institutional Review Board of the Albert Einstein College of Medicine.

Inclusion criteria were: 1) English or Spanish speaking; 2) adult (≥18 years of age) participants; 3) current or past OUD by self-report; and 4) self-reported buprenorphine use. We did not apply OUD diagnostic criteria to avoid framing interviews in a clinical context. All participants gave written consent. Sampling was by convenience, but we directed recruitment to include participants who had used NPB and those who had received buprenorphine during professional treatment. Case managers at the HRAs referred clients who had previously sought services related to their opioid use (e.g., syringe services or referral to buprenorphine treatment). During initial recruitment, we included participants who had used any form of buprenorphine. After analysis of the first 17 interviews, we had not reached thematic saturation regarding influence of NPB use on participant attitudes toward buprenorphine treatment. We thus recruited 5 additional participants who primarily used NPB. Data from all participant interviews were included in the analysis.

Study site setting

The study was carried out at two HRAs in New York City. These HRAs provide syringe services, referrals to medical, dental and addiction treatment, and other supportive services to people who use drugs. Most clients are Latinx or Black, male, 40-49 years old, and inject drugs. Locating the study at HRAs was intended to facilitate recruitment of people who had received buprenorphine treatment and those not engaged in professional treatment.

Research Team

All interviews were conducted by the one author (BH), a physician with master’s degrees in public health and social work and experience working and volunteering in HRAs. The interviewer completed training in qualitative interviewing techniques. The research team also included HRA staff: a nurse, case manager, program coordinator and two other physicians with buprenorphine treatment experience. Three authors who were trained in qualitative methods (BH, AJ, AF) reviewed interview transcripts and performed thematic analysis, while three authors who are staff at the HRA (CF, BG, FR) reviewed de-identified quotations and aided in interpreting findings.

Data collection

The semi-structured interview guide was developed from published research and included the following domains: participants’ attitudes toward buprenorphine, experiences with NPB, decision-making around substance use behaviors, and attitudes toward professional treatment. The guide was pilot tested in two interviews and changed to improve clarity. During interviews, the interviewer introduced himself as a medical doctor, assured confidentiality, and reinforced that participation would not affect participants’ ability to receive HRA services. Face-to-face interviews conducted in a private room at either HRA lasted approximately one hour. All who were screened agreed to participate. Interviews were audio-recorded and professionally transcribed. Participants were compensated with a $20 gift card.

Data analysis

Interview transcripts were analyzed using thematic analysis, which entailed iterative reading and discussion of transcripts with identification of common patterns and relationships between themes (Auerbach & Silverstein, 2003). The lead author produced a list of preliminary codes, which were defined as repeating ideas from the initial four interviews. These transcripts were then independently coded by three of the authors (BH, AJ, AF). Additional codes were added to the codebook until a satisfactory coding schema was developed. This schema was used to code the subsequent 18 interviews, with two investigators coding each one. Interview text could be sorted and extracted by code using Dedoose data analysis software. Transcripts were then discussed by the three coding authors, and discrepancies in coding or revisions to the coding schema were resolved by consensus. Repeating ideas were organized into preliminary themes that elucidated experiences, beliefs and practices, such as motivation for NPB use and decisions about professional OUD treatment. The lead author then summarized key themes and provided context by extracting participant quotations from the text that highlighted the themes. All six authors discussed these themes and de-identified quotations giving feedback and critique. Thematic saturation was reached when the three coding authors agreed that no new themes emerged from analysis of the final three transcripts. The full research team subsequently met to produce a coherent thematic narrative. All names reported in the text are pseudonyms.

Results

Participant characteristics

The twenty-two participants ranged in age from 22-68, with a median age of 45 years. Seventeen participants identified as male. Thirteen participants identified as Latinx, seven as white, and two as Black or African American. At the time of the interview, fourteen participants reported having ever being homelessness, and five were employed.

All participants primarily used heroin, although two participants also reported intentionally seeking out fentanyl, and one participant preferred using cocaine to opioids. A majority of participants (n=17) reported a history of injection drug use. All participants reported having used buprenorphine: fifteen participants had ever used NPB and thirteen had only ever used prescribed buprenorphine. At the time of interview, three participants had a current buprenorphine prescription.

Primary themes

Three main factors drove decisions about prescribed and non-prescribed buprenorphine use: 1) autonomy; 2) treatment goals; and 3) negative early experiences with NPB. An overarching theme was that participants valued autonomy in managing their substance use. NPB was a valuable tool supporting this goal and professional OUD treatment could impede autonomy. Participants described how NPB gave them control over how they took their medication. Participants’ treatment goals also seemed to favor NPB use over professional treatment. Participants mostly used NPB to “self-manage” OUD symptoms – what we label as “bridging” and “detoxing”. The few participants who used prescribed or NPB to achieve euphoria only mentioned this in the context of incarceration. Several participants also reported negative experiences with NPB, including symptoms of withdrawal, which then deterred them from seeking out professional treatment.

Autonomy

All participants reported knowing where to find buprenorphine prescribers. None mentioned provider availability as a barrier to treatment. Rather, participants described that NPB helped them to avoid professional treatment, while still controlling their substance use. Participants perceived professional treatment to be cumbersome, potentially stigmatizing, and unreliable. Carlos described his frustration with an attempt to engage in professional treatment at a clinic:

I try [to] do something the right way, but the way they have it... I want to get out of there. I thought I was going to fill out two or three papers …but nah, I fill some out here, they send me to another floor. I fill some out there, they send me to another floor… People who want to get high [are] desperate, we just want to [complete the] paperwork and get out. …I bought [buprenorphine] on my own… If I’m going to go through a lot of things, it’s not better.

Carlos subsequently used NPB for about a month and a half before stopping on his own.

Alondra described how difficult it would be to tolerate seeing a doctor:

I was still doing heroin at the time, and I didn’t want to go find a doctor. I didn’t want to sit down and wait hours. I didn’t want to talk to anybody. You know?

Experiencing stigma in health care settings was another reason participants avoided professional treatment. Cezar described his experience in this way:

I feel like anybody that has an addiction when they go through a doctor’s office, they feel they’re going to be judged. That’s what I think makes a lot of difference. They don’t even want to go there because somehow people give them looks. “Oh, you’re here?” “Yeah, I’m here for [buprenorphine],” whatever… there’s a look to a drug user. I just feel like a lot of people get judged. So, I avoid having to do that.

Cezar used NPB on a regular basis, but he had no plans to engage in professional treatment.

Other participants highlighted the unreliability of professional treatment – they could be unpredictably cut off from their buprenorphine prescriptions. These participants trusted their ability to access opioids on the street more than in medical clinics. Marcos, who received buprenorphine treatment in jail, described why he discontinued professional treatment after leaving jail:

I know another thing is that one of these days… something will happen that they will shut you off and then you have to withdraw for 4, 5 days until you get back onto it again… That’s why I went to the heroin because I could find it anytime I wanted…With [buprenorphine] you cannot do that once the doctor says you cannot have it.

At the time of the interview, Marcos reported using heroin to manage his cravings and avoiding withdrawal, controlling his substance use on his own terms, while avoiding professional treatment.

Treatment goals: Self-management

Participants used NPB in characteristic ways, which reflected goals of self-managing their OUD. Participants use NPB to manage withdrawal during breaks in opioid use (“bridging”), and to rapidly taper off of opioids (“detoxing”). Both methods were used to self-manage OUD-related problems independent from professional treatment. Participants were also concerned about becoming dependent on buprenorphine, and the short-term self-management strategies met their treatment goals.

Treatment goals: Bridging

Participants commonly described using NPB to control heroin use. Bridging was a strategy to avoid symptoms of opioid withdrawal or temporarily reduce heroin use when needed. These participants did not intend to abstain from opioids but sought to manage the negative effects of their physical dependence, such as avoiding withdrawal when heroin was unavailable or easing the challenges of acquiring heroin daily. NPB use could be very calculated, for example, when planning a break from heroin. Ivan, who used heroin for years, described how NPB worked for this purpose:

I mean I was [too] tired to go out and look for a heroin you know every day. Sometimes you get tired of the same thing… You gotta go [to] this place [and if] they don’t have it over there, you gotta go another place. So, [I] bought like …three buprenorphine…so then I stay[ed] in the shelter where I was, so I don’t have to go in and out, in and out.

Ivan continued using heroin after these breaks, but NPB offered a reprieve from the challenges of obtaining heroin. Other times, Ivan described using NPB when he wanted to feel “clear-headed” and “sharp,” in contrast to how he felt when using heroin.

Sometimes an intentional break was for logistical reasons, such as travel. George discussed using NPB when he was traveling if he wanted to conceal his heroin use:

I might be out of town or something or someplace where I didn’t need the people around me to know that I’m doing heroin because there’s a big distinction. The nodding, all that I didn’t want people to see that. It could be two days, it could be three days, it could be a week. Or if I was going to an event and I didn’t want to have to be ducking out and doing dope, have people actually find me out what I was doing, doing [buprenorphine] would keep me safe.

In other circumstances, bridging with NPB ameliorated breaks in heroin availability. When participants could not find or afford enough heroin, NPB was a good alternative. Alondra, who used NPB as bridging on a frequent basis, described how she made her daily decisions to use NPB versus heroin:

I just play it by ear. One day…I have money…I’m going to do heroin. I don’t have money. I’ll get a strip. Like that.

Alondra had used NPB along with heroin in this way off and on for several years. Although many participants had, at some point, used bridging, only a minority regularly employed this strategy.

Treatment goals: “Detoxing”

Participants sometimes used NPB for opioid cessation intending to abstain from opioid after a short course of buprenorphine. Participants sometimes referred to this method as “detoxing.” Ivan, who had used heroin for many years, described the detox method:

That time I wanna stop [heroin] by myself. I use one little piece, four days…finish and the fifth day, I use nothing. No heroin, nothing. I wanted to stop using.

Alex, who used non-prescribed opioid analgesics in addition to heroin, similarly described his plan to stop heroin with NPB:

I was trying to get off the heroin. I bought a couple of them, and that’s it.

Neither Ivan nor Alex intended to seek professional treatment for their OUD. When asked, both expressed uncertainty of how a treatment provider would help given their ability to meet their own treatment goals.

Most participants who used NPB for opioid cessation did so for only a few days, however three participants used for much longer periods. Carlos used NPB for a couple months before stopping on his own. He subsequently returned to using heroin. The second participant used NPB for several months, then transitioned to a professional buprenorphine treatment program. The third participant used NPB for several months while living in a state with low heroin availability, and then she began using heroin again when she returned to New York City. Despite participants’ intentions to achieve abstinence, all of the participants who used short courses of NPB for opioid cessation continued using opioids shortly after stopping NPB.

Negative experiences with NPB

Some participants had negative experiences with NPB that influenced their decision to not use any form of buprenorphine – either NPB or professional treatment. Several participants experienced severe opioid withdrawal symptoms while using NPB, which likely represented precipitated withdrawal. Liz described experiencing withdrawal symptoms after taking NBP for the first time:

So, I crushed it up and I went to go shoot it up. And when I shot it up, I thought I was going to die. My heart was just “brra, brra, brra, brra” just in my chest just sweating. I went into precipitated withdrawal. I thought I was going to die. I was throwing up so hard I burst the capillaries in my eyes. I was so sick, and it scared me from doing [buprenorphine] again for a few years. Period. Even touching it.

She subsequently decided to avoid any form of buprenorphine. Liz acknowledged that professional treatment could be different; however, her reaction was so extreme that she was did not want to try.

Other participants reported persistent withdrawal symptoms while taking NPB, which may have reflected taking doses inadequate to meet their opioid tolerance. Despite having successfully used both NBP and buprenorphine through professional treatment, George described an uncomfortable experience with NPB:

It took five days of suffering for it to work whereas before it worked without the suffering. All right? The throwing up, this, that and so and so. It was a different story this time and I didn’t like the way it worked this time. I didn’t because I suffered through it. No, I actually wasn’t thinking about continuing the [buprenorphine] because I was so tight about [what] I went through to get off the [heroin]. I was like, “I don’t know about this [buprenorphine] stuff again.”

All participants who had negative experiences with NPB seemed to also hold negative attitudes toward professional buprenorphine treatment.

Discussion

We found that autonomy was a central concern driving participants’ decisions about NPB use and professional treatment. Participants viewed professional treatment as burdensome, stigmatizing, unreliable, and they were uncomfortable in clinical settings. NPB provided participants with autonomy from professional treatment. Participants desired control over how they used buprenorphine, choosing to use NPB to self-manage opioid withdrawal and reduce or stop illicit opioid use through “bridging” and “detoxing.” The autonomy afforded by NPB also appeared to have negative consequences. Some participants had precipitated withdrawal or persistent opioid withdrawal after NPB use, which engendered negative attitudes toward buprenorphine. Thus, participants used NPB to maintain control over their substance use, but they may not have fully realized the potential benefits of buprenorphine treatment.

Our findings contribute to the literature on NPB by describing the role of autonomy and suggesting potential pros and cons of buprenorphine use outside of professional treatment. Qualitative investigation by McLean and Kavanaugh (2019) described autonomy in a different context. Participants reported using NPB and benzodiazepines together, which would not be allowed during professional treatment. Silverstein et al. (2020) used the term “self-determination” instead of autonomy, but similarly described how participants used NPB to take control of their addiction. In their study, participants reported using NPB to prepare themselves for professional treatment at times when they were not quite ready to enter treatment.

Describing autonomy enriches previous conclusions that NPB is primarily used to self-manage opioid use (Allen & Harocopos, 2016; Genberg et al., 2013; Gwin Mitchell et al., 2009; Silverstein et al., 2019). Existing literature largely frames NPB use as a means to compensate for the absence of professional treatment, for example, as a response to limited availability or high costs (Bazazi et al., 2011; Carroll et al., 2018; Cicero et al., 2018). In contrast, our study demonstrates that even in an environment where professional treatment is readily available and covered by Medicaid insurance, people continue to use NPB to self-manage their opioid use without expressing great interest in professional treatment. Thus, maintaining autonomy and self-determination is critical to many people with OUD.

Respecting autonomy is an important concept in bioethics and harm reduction philosophy and has been described as critical for treating SUDs (Kinsella, 2017) Bioethics defines autonomy as “the principle that a person should be free to make his or her own decisions” (Iserson, 1999). Harm reduction philosophy accentuates respect for the person and their individual choices (Vearrier, 2019). In contrast, some SUD treatment models use coercive (Sullivan et al., 2008) or punitive approaches that diminish patient autonomy (Vearrier, 2019). Our findings, along with much of the NPB literature, suggest that even without professional treatment, people with OUD can and do self-manage their opioid use. Therefore, if treatment professionals wish to increase voluntary utilization of their services, maximizing patient autonomy, as possible, will likely be necessary and beneficial.

The use of NPB to maintain autonomy should be considered within a broader range of factors influencing treatment seeking. Prior literature suggests that external support and social pressure, such as from family or employers, motivate treatment-seeking (Hewell et al., 2017; Tsogia et al., 2001). When NPB is used to maintain autonomy, supports may not be available. Pursuing self-management alone could leave people socially isolated thereby impeding recovery. Providing opportunities for non-judgmental social support while respecting autonomy could aid engagement into professional treatment. On the other hand, NPB alone may facilitate successful treatment entry. Research associating prior buprenorphine experience with greater treatment retention may support this pathway (Cunningham et al., 2013). Thus, people may start NPB to maintain autonomy, but NPB use could also provide opportunities to increase treatment engagement.

Nonetheless, many people with OUD do not want or need professional treatment. Prior literature has demonstrated that many people with OUD successfully meet their long-term health goals without entering professional treatment (Granfield & Cloud, 2001) (Biernacki, 1990). NPB may play an important role in long-term OUD self-management, and long-term health outcomes should be explored in future research.

Our findings have implications for increasing the desirability of professional treatment to people with OUD. A “low-threshold” model of buprenorphine treatment and shared decision-making could reduce hassles while respecting patient autonomy. Low-threshold buprenorphine treatment uses policies and procedures that prioritize engagement in care over compliance with strict programmatic rules (Jakubowski & Fox, 2019). Models of buprenorphine treatment based in harm reduction agencies can engage people who are out of treatment (Stancliff et al., 2012) and reduce opioid use (Bachhuber et al., 2018; Carter et al., 2019; Hood et al., 2019), while offering non-judgmental social support and peer counseling services. Patient-centeredness is becoming a quality standard in SUD treatment (Marchand et al., 2019). Shared decision-making, a cornerstone of patient-centered care, has been associated with increased sense of autonomy (Joosten et al., 2011). By providing patients a more active role in self-management, shared decision-making has been shown to decrease substance use and psychiatric severity for patients with SUD (Joosten et al., 2009). Shared decision-making in OUD treatment may mean accepting patients’ treatment goals, even when they diverge from professional standards. For example, facilitating easy treatment entry or re-entry when treatment is requested would be beneficial for patients with short-term treatment goals. Future research should focus on new ways of making OUD treatment more patient-centered and integrating shared decision-making in addiction care.

Our study has noteworthy limitations: (1) Our cohort was recruited through convenience sampling of harm reduction agency participants in an urban area with high availability to OUD treatment. Attitudes and practices may be different in other settings; (2) Previous research has identified a wide range of strategies to cope with OUD outside of formal treatment, including use of prescribed and non-prescribed medications, use of other substances, behavioral changes, social support, or environmental changes, which we do not explore in this study (Dean et al., 2011; Mitchell et al., 2009; Silverstein et al., 2020); (3) Local availability and cost of NPB, which were not explored in this study, likely influence NPB use; however our findings on motivations for NPB are likely to remain relevant, even as these other forces alter NPB practices; (4) This study shares the limitations of other qualitative methods, such as the potential for recall bias and social desirability; however, we took steps to assure participants’ comfort with reporting both positive and negative experiences with NPB use and professional treatment;(5) Additionally, all interviews were performed by a physician whose medical training likely influenced interview style and content; however, semi-structured interview guides were developed with harm reduction staff, pilot tested with participants, and the research team included practitioners from several disciples.

Conclusions

Although medication treatments for OUD are safe and effective, persons at greatest risk for OUD-related harms are often those who are most marginalized from care. Addressing the opioid epidemic will require patient-centered interventions that engage a larger segment of those who need OUD treatment. Our results suggest that people use NPB to control their substance use while maintaining autonomy; however, there may be missed opportunities for education, social support, and professional guidance. Patient-centered, low-threshold treatment models may strike the right balance where reliable access to buprenorphine is assured and patients can also benefit from counseling, medical care, and other aspects of professional treatment. Most importantly, OUD treatment providers and researchers should acknowledge the critical role that autonomy plays in the decisions that people with OUD make regarding professional treatment.

Funding:

This research was supported by the Montefiore Department of Family and Social Medicine Alumni Fund. Dr. Fox is supported by the National Institutes of Health under Grant R01DA044878.

Footnotes

Declaration of Interest Statement

All authors report no conflicts of interest.

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