Abstract
Stigma is a well-documented barrier to effective individual and community response to mental illness and, in recent years, is a recognized impediment to prevention and treatment of substance use disorders (SUDs). This study uses focus group data to explore stigmatizing views of medication assisted recovery (MAR) among those in recovery and the people, organizations, and communities that surround them, with attention to implications for long-term recovery. Across groups, we find consistent themes that MAR simply trades one drug for another, MAR should be used only as a stepping-stone to full abstinence, and that long-term use of MAR indicates ineffectiveness or treatment failure. Data suggest the prevalence of these perceptions leads those in recovery and providers to see MAR as a last resort treatment, encourages individuals to discontinue MAR before they are ready, and as result increases risk of relapse and overdose.
Introduction
In 2021, 1 an estimated 100,306 people in the United States died of opioid overdose (Centers for Disease Control and Prevention National Center for Health Statistics 2021). Some of these deaths may have been avoided with effective use of Medication Assisted Recovery (MAR). MAR is considered the “gold standard” for treatment of opioid use disorder (OUD) in that it increases patient retention and decreases drug use, infectious disease transmission, and criminal activity (Olsen and Sharfstein 2014; SAMHSA 2021a; SAMHSA 2021b), yet most individuals in recovery from OUD do not use MAR (R. E. Stewart et al. 2021; National Institute on Drug Abuse 2016), possibly due, in part, to the stigma surrounding it. Stigma is a critical barrier to broadening access, financing, and use of MAR (Tsai et al. 2019) and reflects broader attitudes toward substance use disorder (SUD) that frame it as a moral failing whose solution is self-control, rather than a chronic disease that may require long-term maintenance treatment. The moral failing frame (Goffman 1974; Heather 2017; Harding 1986; Snow et al. 1986) or mental model (Meadows 2008), of addiction is both a producer and product of public and structural stigma (Pescosolido and Martin 2015). The stigma complex surrounding SUD produces a corollary stigma around MAR with significant consequences for effective treatment of OUD. Public policies and institutional responses over the last century emphasize personal responsibility and embrace abstinence-only approaches as the standard for recovery. These approaches reinforce a belief that MAR and harm reduction strategies stop short of “clean” recovery.
Background
The U.S. has not always approached SUD as a moral failing or crime. Prior to the 1906 Pure Food and Drug Act, drug use was unregulated in the U.S. (Acker 2002; A. M. Courtwright 2009 and Musto 1999 as cited in Boeri 2018:19). At that time, widespread opioid use was common, and U.S. society treated overuse as a medical problem. People often spoke with their family physicians about their addiction, and physicians responded with medical treatment, including treating those addicted to opium with legal opiates as pharmaceutical substitutes for illegal opiates (Andraka-Christou 2020:19–20; Boeri 2018:19). 2 Driven by anti-immigrant sentiment toward the Chinese, widely stereotyped as opium users, the Harrison Narcotics Tax Act of 1914 placed a tax on drugs, shifted drug sales to the purview of physician and pharmacist oversight, and required those who sold drugs to register and record sales. A physician could only dispense opioids “during the course of his professional practice.” The 1919 Webb v. United States decision further curtailed physician discretion when, in a five to four vote, Dr. Webb of Shreveport Louisiana lost his case on appeal to the Supreme Court. The prevailing justices argued that morphine maintenance for opioid addiction was not a legitimate medical practice, and implied that addiction was not a legitimate medical condition (Andraka-Christou 2020:20).
The Eighteenth Amendment (the Volstead Act), passed in 1919, established prohibition and ushered in the framing of intoxication by any substance as a moral failing; trade and use of substances was criminalized and the resulting underground market-generated crime and violence (Boeri 2018:19). Prohibition ended with the 1933 ratification of the Twenty-first Amendment. In 1962, the Supreme Court declared addiction a disease, not a crime. People suffering from OUD were still incarcerated, especially those who were poor (20). Methadone maintenance came on the scene in 1964, but only those with resources had access to the treatment (20).
In the five and a half decades since that time, rates of opioid use have ebbed and flowed as the result of policy and enforcement shifts, pharmaceutical developments, prescribing practices, and the market dynamics these combined forces create (Andraka-Christou 2020; Boeri 2018). Over that period, however, the moral failing frame, with criminal justice as the responding institution, drove public policy with an occasional nod to treatment and rehabilitation (Boeri 2018). 3 Since 2000, legally prescribed prescription pill abuse precipitated the emergence of an opioid epidemic that hit communities across the country and crossed lines of social difference (race, class, and urban/rural) (Andraka-Christou 2020; Boeri 2018; Rogers, Gilbride, and Dew 2018:226–28; Thombs et al. 2020).
The Food and Drug Administration (FDA) has approved three medications, prescribed in concurrence with counseling and behavioral therapies, for the treatment of OUD: methadone, buprenorphine, and naltrexone. Each of these medications works differently to balance the brain receptors affected by illicit opioid drug use and strengthen the patient’s ability to manage their recovery (National Institute on Drug Abuse 2019). Methadone functions as a full agonist; it fully binds to the opioid receptors and reduces the physiological craving for opioids. Establishing an appropriate dose to reduce cravings without inducing drowsiness can be difficult. Nodding off is a common side effect that tends to feed the perception that Methadone simply trades one high for another. The Substance Abuse and Mental Health Services Administration (SAMHSA) approves Methadone for medically supervised withdrawal from opioids and continued recovery maintenance with no end date specified (SAMHSA 2021a:1–1 to 1–10). Methadone is highly regulated. Only federally certified opioid treatment programs (OTPs) can dispense daily doses of the treatment. OTPs are often small stand-alone facilities, not part of larger medical practices, whose long lines extend beyond their doors, making them visible to the public. Their visual presence, and separation from medical offices, likely contributes to public stigma. Longitudinal studies support ongoing maintenance treatment with methadone (Lee et al. 2016; Nosyk et al. 2012; Stimmel et al. 1977 and Cushman 1978 as cited in SAMHSA 2021a). Most of those who choose to stop or taper Methadone treatment relapse during or after completing the taper (Stimmel et al. 1977 and Cushman 1978 as cited in SAMHSA 2021a).
Buprenorphine is a partial agonist; it partially binds to the opioid receptor and produces weaker effects than a full opioid, which may present in individuals as fewer or less pronounced symptoms of tiredness, sensitiveness, and depressive state than for those on methadone (Seifert et al. 2006). Unlike methadone, a certified physician can prescribe buprenorphine, increasing access and limiting the stigma associated with going to OTPs. In terms of effectiveness, a multi-site randomized trial of patients addicted to prescription opioids found that continued buprenorphine was superior to buprenorphine dose taper in reducing illicit opioid use (Weiss et al. 2011) and long-term studies confirm its effectiveness outside of clinical research protocols (Fiellin et al. 2008; Soeffing et al. 2009).
Naltrexone works as a full antagonist on the mu-opioid receptors in the brain; it binds to the opioid receptor, blocks binding of any other opioids, and does not produce the effects of an opioid (Helm et al. 2008). Naltrexone is not a scheduled medication, and therefore is not subject to opioid treatment regulations (Ginzburg 1985). Practitioners can administer an intramuscular injectable once a month, which means less time at an OTP or physician’s office (SAMHSA 2022). Due to its low rate of diversion (i.e., prescriptions being redirected to street trade and use), naltrexone is the least stigmatized medical intervention for individuals with OUD (R. E. Stewart et al. 2021). A random assignment study of justice involved adults who received XR-NTX (Naltrexone), along with brief counseling and community treatment referrals, found that at six-month follow-up, those who received the medication demonstrated a longer time to return to substance use, a lower rate of return to use, and a higher percentage of negative urine screens (Lee et al. 2016).
Despite abundant information to support MAR as effective, only 36 percent of all organizations for individuals with SUD and 33 percent of publicly funded organizations offer MAR (Mojtabai et al. 2019; National Institutes on Drug Abuse 2016). Only 10 percent of individuals with OUD are receiving any form of treatment (R. E. Stewart et al. 2021).
This research anticipated finding differences in perceptions of MAR across stakeholder groups and predicted that these differences would create tensions that deterred effective use for long-term recovery. However, focus group conversations include consistent stigmatizing perceptions of MAR across groups. Shared views of MAR reflect society-wide mental models and create a significant barrier to effective treatment. The stigmatizing ideas filtered through the roles of the various stakeholder groups reflect the five action-oriented stigmas Pescosolido and Martin (2015) identify as part of the stigma complex: self-stigma, courtesy stigma, public stigma, provider-based stigma, and structural stigma. Our focus groups indicate that those in recovery, their friends and family, service providers, and the communities that surround them see MAR as a last resort, discourage use of MAR as part of long-term recovery, and uphold strong expectations for abstinence-based recovery. This stigmatization may prevent and disrupt effective use of MAR.
Literature Review
Stigma is “a deeply discrediting attribute; ‘mark of shame’; ‘mark of oppression’; or ‘devalued social identity’” (Pescosolido and Martin 2015:92; Goffman 1986). A deeply rooted stigma complex challenges use of MAR as an effective tool to prevent death and support long-term recovery. Stigma complex refers to the way that stigma is woven into various pieces of the social system in ways that interact, reify, and reproduce stigmatizing views (Pescosolido and Martin 2015). The stigma complex includes the following types of stigmas: structural, public, provider, courtesy, and self (Pescosolido and Martin 2015).
Individuals in recovery from OUD who use MAR experience two sites where the stigma complex affects self-concept and recovery decisions: one based on their condition (OUD), and another based on their treatment intervention (MAR) (Hewell, Vasquez, and Rivkin 2017; Madden 2019; Witte et al. 2021). Regardless of the specific medication, the use of a substance to stay in recovery and avoid feeling sick contradicts the prevailing sentiment that “true recovery” requires abstinence from all substances and in so doing, it triggers stigmatizing responses (R. E. Stewart et al. 2021).
Public health strategies, including SUD prevention, often work from a social ecological model (Bronfenbrenner 1999; Community Anti-Drug Coalition of America 2010:4; Hewell et al. 2017; Rogers et al. 2018; Snedker, Herting, and Walton 2009). This model recognizes the individual as existing nested within a family and network of friends, organizations that shape beliefs and routines, communities that convey cultural values and norms, and societies structured by policies and institutional practices (Bronfenbrenner 1999). Pescosolido and Martin use a systems approach and describe the stigma complex (Pescosolido and Martin 2015). The stigma complex maps onto the social ecological model and recognizes the interrelated systems that produce and reinforce stigma at micro, meso, and macro levels. Each layer of the social ecological model contributes and plays a role in creating and perpetuating beliefs, actions, and consequences. Taken-for-granted paradigms and mental models shape everything in this complex system, from macro-level policies and structures to individual attitudes and behaviors (Meadows 2008). Each of these levels can be a site for action-oriented stigma. The greatest leverage for transformational change to the stigma complex (Pescosolido and Martin 2015) is in transcending the mental models and paradigms that shape institutions, organizations, social relations, and individual perceptions (Meadows 2008:162–65).
The mental model of OUD as a moral failing reduces community support for MAR (Olsen and Sharfstein 2014). Stigmatization from institutional structures to internal thought patterns that result from acceptance of negative stereotypes can directly affect treatment outcomes. Those who belong to or seek belonging in a community with stigmatizing beliefs toward their condition are less likely to enter treatment (Cooper, Corrigan, and Watson 2003), and have higher rates of treatment discontinuation (Conner and Rosen 2008).
The theory of reasoned action assumes the constructs predict pursuit of treatment and maintenance of recovery: (1) a person’s beliefs about the treatment, (2) perceptions of social norms surrounding the treatment, and (3) feelings of self-efficacy regarding the treatment (Andraka-Christou 2020) “Perceptions of social norms surrounding the treatment” includes whether others view the treatment positively (Andraka-Christou 2020:14). Within a social ecological structure where multiple levels actively stigmatize both SUD and the use of medication as treatment for OUD and where community social norms indicate abstinence as the standard of recovery, the choice to avoid or reduce use of MAR is reasoned action (Hewell et al. 2017; Rogers et al. 2018).
At the highest level, the criminalization of drug use exemplifies structural stigma that has consequences for other institutions. Because many drug offenses are felonies, a history of OUD can limit access to housing and employment (Evans, Blount-Hill, and Cubellis 2019). This structural stigmatization creates a context where prejudice and discrimination at organizational, group, and individual levels is acceptable and even justified (Corrigan, Markowitz, and Watson 2004). Criminalization adds a component of fear (people associate crime and violence) that may justify a range of negative or exclusionary responses to those struggling with addiction or in recovery (Evans et al. 2019). In the context of the opioid epidemic, Americans have come to see symptoms of OUD as physical rather than signs of mental illness, bad character, or poor upbringing (Perry, Pescosolido, and Krendl 2020). However, even as Americans recognize the physiological realities of OUD they express “high levels of willingness to subject them [those suffering from OUD] to social exclusion” (Perry et al. 2020:115).
Provider-based stigma is “prejudice and discrimination voiced or exercised, consciously or unconsciously by occupational groups designated to help stigmatized groups” (Pescosolido and Martin 2015). Physicians, addiction counselors, and service providers stigmatize MAR (Hewell et al. 2017; van Boekol et al. 2013; Luoma et al. 2007; Witte et al. 2021). In SUD treatment systems, stigma may be rooted in firsthand experiences with drug use/recovery (R. E. Stewart et al. 2021), burnout from caring for a high caseload of patients, and emotional exhaustion associated with caring for patients with dual diagnoses (Scott et al. 2021; Van Boekol et al. 2013). Scott et al. (2021) note four aspects of provider stigma: distrust of patients with OUD, patronizing attitudes toward patients, disagreement with incentivizing treatment goals, and exacerbation of patient self-stigma, courtesy stigma (stigma by association with marked groups—MAR users) and public stigma toward MAR. Additionally, when patients recognize stigma in providers, it may influence them to prematurely end treatment or limit treatment engagement (Hewell et al. 2017; Scott et al. 2021; Tsai et al. 2019; Van Boekol et al. 2013).
Self-stigma relates to an individual’s identification with a group and the internalization of stereotypes associated with that group. Self-stigma can be a barrier to treatment entry (Corrigan and Nieweglowski 2018). Public stigma and self-stigma combine to support a strong definition of in-group within the recovery community that defines recovery as abstinence from all drugs (except caffeine and nicotine). Parts of the SUD recovery community hold and express stigmatizing views of MAR and engage in “othering” those who use MAR (Andraka-Christou 2020; Andraka-Christou, Randall-Kisch, and Totaram 2021). Individuals in recovery from OUD who did not use medications to sustain recovery stigmatize individuals who use MAR as “trading one drug for another” (Madden 2019). Twelve-step programs, not intended to be used as treatment and created before any effective medications for OUD were available (Galanter 2018; R. E. Stewart et al. 2021), often express the preference for individuals in recovery to be free of substances and may alienate or exclude those who use medication as part of their recovery (Andraka-Christou et al. 2021). Research finds multiple manifestations of abstinence expectations resulting in what Pescosolido and Martin (2015) calls “treatment carryover,” discrimination in treatment toward those using MAR: prohibiting people using MAR from speaking at 12-step meetings, encouraging premature cessation of treatment, describing individuals using MAR as “not in recovery,” and denying ability to sponsor/be sponsored by individuals using MAR (Andraka-Christou et al. 2021). This conflict enhances existing self-stigma: internalization of negative stereotypes that can cause anger and shame and may push individuals to lie about their use of MAR (perpetuating behavioral aspects of addiction), or discontinue earlier than recommended, increasing risk of relapse and overdose (Andraka-Christou et al. 2021). Discrimination toward individuals on MAR from 12-step programs is so pervasive that new programs, such as Methadone Anonymous, have emerged to provide a safe space for individuals on MAR to participate in 12-step programs (Ginter 2012).
Peer groups are the most frequently endorsed form of support (Wu, Zhu, and Swartz 2016) and the dominance of the 12-step model of abstinence-only recovery poses a significant challenge to effective response to OUD. Physiological realities of OUD problematize the abstinence-only component of 12-step programs. The disease model of SUD embedded in the 12-step approach and accepting what one cannot change, but then demanding abstinence, does not fit with how OUD, as a disease, changes the physiology of the body, and how the changes in the body sustain the disorder (Heather 2017). Moreover, to the extent that stigmatization leads to social isolation, it increases risk of relapse and overdose (Bell and Strang 2020; Christie 2021).
The attitudes and perspectives of the culture, practices of organizations, and interactions with family, friends and others in recovery all shape the views of the individual struggling with OUD or working on recovery (Hewell et al. 2017; Rogers et al. 2018). The self-devaluation associated with drug use leads many to delay or avoid treatment (Corrigan and Nieweglowski 2018; Luoma et al. 2014). Self-stigma attached to use of MAR may lead individuals to avoid use of MAR and/or place arbitrary time limits on use.
The current qualitative exploration is part of a multi-year, mixed-methods study of the role of MAR in long-term recovery from OUD. This research explores the role of MAR and other practices and resources in supporting or hindering long-term recovery. This piece delves into conversations with community members, service providers, friends and family, and those in recovery to understand the messages and experiences that shape the use of MAR in long-term recovery.
Methods
Focus groups (or group interviews) allow researchers to explore a particular topic through semi-structured discussion among groups of individuals who have experienced some “particular concrete situation,” which serves as the focus of the interview (Merton and Kendall 1946:541, as cited in D. W. Stewart, Shamdasani, and Rook 2007:9). Group interviews sought perspectives on the impact of MAR on long-term recovery from representatives of different layers of the social ecological system in which individuals pursue recovery: community members, service providers, family and friends of those in recovery, and individuals in various stages of recovery.
In exploring perceptions of the impact of MAR on recovery, the research team anticipated distinct groups might have distinct experiences and sources of knowledge that would inform their perceptions of MAR in ways associated with their role or relationship to the issue. The research team approached the conduct of group interviews and coding of focus group transcripts with curiosity and a grounded, inductive (Strauss and Corbin 1994) approach to understanding how these groups view the role of MAR in OUD recovery.
Interview guides of 14 to 20 questions (a mix of short answer and in-depth questions) explored perceptions of recovery. Questions differed based on group composition, but all centered on the study’s aims of determining the impact of MAR on recovery, factors that support and impede recovery, and definitions of typical recovery courses. Sample questions include Describe any thoughts or feelings you have about people using Medication Assisted Treatment? How do you think Medically Assisted Treatment impacts people recovering from opioid use disorder? (see Appendix A for Interview Guide).
The Indiana University Institutional Review Board approved all study procedures. Participants responded to recruitment via fliers, advertisements, and word of mouth. Interested individuals contacted the study team and completed a short phone screening to assess eligibility (at least 18 years of age, self-identified into one of the target subgroups). Eligible participants attended a two-hour focus group meeting. Groups included two to 10 individuals in the same subgroup (e.g., long-term recovery). Participants completed the informed consent process and a short questionnaire to collect basic demographic information.
Focus group discussions occurred on-site, in person at local substance use treatment centers, after hours, and without staff from those organizations present, except in the case of service provider focus groups, where staff were able to participate in the group. The research team paid participants $40 for their time and provided snacks and water. Three research staff attended each focus group and audio recorded the group interviews. One researcher facilitated the discussion. The facilitator presented participants with open-ended, structured interview questions and allowed them to discuss their responses, with occasional probes from the facilitator. After the group discussed all questions or when two hours had passed (whichever came first), research staff closed the conversation, paid participants, and dismissed them. Participants received a hand-written thank you note following group completion.
The research team used NVivo automated transcription (QSR International 2019) followed by human correction and editing in Microsoft Word to produce full transcripts of each event (Bazeley and Jackson 2013). Pseudonyms replaced all names and the team formatted transcripts for import and use in NVivo qualitative data management and analysis software (Bazeley and Jackson 2013:58–61). The team read the transcripts and noted words and phrases in the margins of paper transcripts to identify themes (Saldaña 2016). Researchers met to discuss themes and create a combined list to use as the initial descriptive codebook informed by emergent patterns in the data. The team auto coded transcripts by instrument (i.e., group type) and by question item in a protocol approach (Saldaña 2016). Two research assistants read all transcripts and coded using the initial descriptive codebook. The team used the memo system in NVivo for notes, questions, and to explain suggested additions to the codebook or methods for determining application of codes (Bazeley and Jackson 2013). After revisiting suggested additions as a team, the team updated the codebook to reflect additional themes or more fine-tuned themes within existing codes. Two coders then revisited the transcripts with the more fully developed codebook. NVivo’s coding comparison and inter-coder reliability functions identified coder discrepancies. The team met to discuss any differences and reach consensus on how to code such instances. Inter-coder agreement for codes used in this analysis were between 87 percent and 100 percent, with most of the data set at 100 percent agreement. Discrepancies resulted from coders including different amounts of surrounding text from the same instance. For the sake of improving validity in our interpretations, the team opted to err on the side of inclusion.
As the team recognized a pattern of responses that reflected stigmatized views of OUD, this raised some additional questions for which we sought clarification. The team contacted a subgroup of participants for member check follow-up interviews (N = 16) (Lincoln and Guba 1985). Researchers used a synthesized member check approach (Birt et al. 2016) to share interpretations of the data and ask participants to assess whether the research team’s themes and interpretations resonated with their own perceptions and experiences and with their understanding of the conversations that occurred within the focus groups. Sample questions that were asked included,
If MAR is working, what will that mean for the person in recovery? What does that look like? Can you talk about how you perceive the fact that some people use MAR long-term as part of their recovery? Many of the comments we heard from all groups acknowledged MAT’s effectiveness but wanted it to be a stepping-stone and felt it was important that it led to what was described as “clean” or to “full sobriety.” Do you share this feeling? Why or why not? Have your own ideas about recovery and the role of MAR in recovery changed over time? How and why?
Focus groups included 101 participants (58.4 percent female, 39.6 percent male, 2.0 percent non-binary who identified as transgender; mean age = 40.6 years, SD = 14.6 years) identified through self-response to study fliers, interest forms, e-mails, social media posts, and word of mouth. The research team recruited individuals equally from two sites: a densely populated urban area (N = 46) and suburban and rural communities within a different metropolitan area (N = 55). Individuals self-identified into one of the following subgroups: individuals in short-term recovery from OUD (<1 year in recovery, N = 20), individuals in long-term recovery from OUD (3 years or more in recovery, N = 24), professional caregivers/service providers for those with OUD (N = 21), family and friends of those in recovery from OUD (N = 19), and community members with no known close ties to individuals with OUD (N = 17). Participants report their race and ethnicity as follows: White (65.3 percent), Black or African American (25.7 percent), American Indian/Alaska Native (3.0 percent); and Hispanic or Latino (4.5 percent). Most of the sample self-identifies as heterosexual (84.8 percent heterosexual, 8.1 percent bisexual, 3.0 percent gay or lesbian, 2.0 percent preferred not to answer, one self-described as “queer” and one as “none”). The modal family income category of participants is $50,000 to $74,499, with 44.4 percent working full-time, paid work, and 24.2 percent working part-time. Just over 10 percent are full-time students, 8.1 percent part-time, and 4 percent self-described as full-time homemakers and/or caregivers. Six participants are on leave or out of work due to illness or disability (6.1 percent) and 8.1 percent are retired. Twelve respondents classify themselves as having “other” employment status. Individuals report an average of 14.02 years (SD = 2.46) of education with high school diploma or equivalency as the modal response to highest degree earned (45.4 percent).
Results
Respondent narratives reflect the stigma complex shaped by mental models of moral failing and the need for self-control in the form of abstinence throughout the social ecosystem in which individuals work to recover from OUD. Stigmatizing perceptions of MAR may prevent effective, early, and ongoing use to support safe long-term recovery (Hewell et al. 2017).
Across groups, individuals tend to agree that MAR can be an effective part of successful recovery. Most qualify their support through one of the following themes: (1) MAR trades one drug for another and those who use MAR are not in “recovery”, (2) MAR is acceptable as a stepping-stone to sobriety, and (3) long-term use of MAR indicates treatment failure or ineffectiveness. Individuals in each group cite concerns that MAR replicates addictive behaviors in that it allows the user to delay or avoid developing the “self-control” required for true recovery, defined by abstinence from substance use. For each theme, we present examples to represent the common sentiments we heard from the various stakeholder groups.
Trading One Drug for Another
The perception that MAR simply trades one drug for another emerged across groups and was most prevalent among individuals in recovery from OUD. Many cited that instead of working toward sobriety, those who use MAR continue their previous behaviors but reframe their dependence on another vice as “recovery”: You’re talking about using one drug to cure another drug . . . No, no, no, no. It ain’t right. Period. Because drugs ain’t nothing to play with. Either way that’s the same thing. You’re still doing the wrong thing. (Ray, Community Member) If you’re on Suboxone or you’re on methadone and you’re not being tapered down, you’re using. (Kilee, Service Provider) It’s a substitution. (Kelly, Service Provider) She’s happy while she’s on it and that’s important to me. She’s a very close friend and her happiness and her being healthy and alive means more to me than taking essentially a legal version of what she was taking illegally. I would rather have her on a very small dose with doctor treatment monitoring than let her go out and take a whole prescription bottle of drugs and end up dead the next day. (Autumn, Family and Friends) Just because from methadone or Suboxone doesn’t mean you’re still not using. They just use a higher dose. But until that person decides that they really want to quit, it does not matter. Still on it in 15 years, they haven’t made up their mind yet. (Susan, Family and Friends) It’s the same thing. You trade one addiction for the other. If I say, “Well, I’m going to quit drinking and drugging but I’m going to go over here and gamble,” you’re still swapping addiction for addiction. (Matthew, Long-term Recovery) I was becoming dependent on [the medication and], I didn’t like it. Substituting. I’m trading that for this, so what’s the purpose? (Kurtis, Short-Term Recovery)
Those who use MAR echo sentiments of behavior replication and cite continued physical dependence as a deterrent for treatment continuation. For many, the fact that medications have to be tapered to avoid withdrawals is proof that they just trade one drug for another and those who use them are not “clean”: 4
I will tell you that was the hardest withdrawal I’ve ever done in my life. It was psychological. It turned me into a maniac. And it was the single hardest thing I ever had to get off of in my life . . . I think it’s great when you’re in detox, but I think that they should detox you off of it before they send you out the door that’s how I feel about it. (Austin, Long Term Recovery)
People in long-term recovery tend to acknowledge that different strategies work for different people, but their narratives still turn to themes related to potential for misuse, getting high, and/or physiological dependence as signs that MAR simply trades one drug for another with no qualitative difference in impact: I don’t knock anybody who is on medicated assisted treatment because it’s their thing and it works for them, sometimes. But I know that those things can be abused. When it comes down to it, you’re still covering up the same feelings inside you that make people want to get high in the first place. Like you can’t treat a substance abuse problem with another substance in my opinion. (Kayla, Long-term Recovery)
Stepping-Stone
The role of MAR most widely endorsed across groups was as a stepping-stone to sobriety: a stage of treatment/recovery that will lead to full abstinence, which the larger culture equates with “successful” recovery. Narratives vary in their sense of the appropriate length of use, from a three-day detox to a couple years of maintenance treatment: It’s a way of weaning them off everything. I think that that’s just one of the steps that they have to take to get clean. (Clara, Community Member) None of it should be longer than 30 to 60 days, period. It should not be a long term after 90 days situation. (Kilee, Service Provider) Most people, once they are full blown addicted to opiates, the biggest driver for continued use is avoidance of withdrawal. Suboxone can help take that away so that they can start and get into recovery and get their life back on track and hopefully change the people, places, and things that they need to. And then eventually you come off the Suboxone and maintain a healthy life without it. (Rick, Service Provider) My wish for everyone is to be clean. But that’s not reality. So, you know if you stay on it maybe a year or so maybe yeah. Then I feel like you’re being recovered, but if you are on it for 10 or 15 years then that’s not really helping you. It’s not beneficial to you. (Susan, Friends and Family) I think it works to get off the physical dependent part but, I don’t think it’s a good idea for long-term treatment. (Kayla, Long-term Recovery) I think long term it’s worse than just going through the withdrawals immediately or whatever. (Wanda, Short-Term Recovery)
The cultural perception of abstinence as the pinnacle of recovery leads people to equate use of MAR with not being “clean,” and thus not in active recovery. Participants cited the dissonance between using medications and being in “recovery” as justification for using MAR only as a stepping-stone toward abstinence. Underlying this perspective is a belief that once acute withdrawal symptoms have passed, the neurophysiology of the person with OUD returns to an undamaged state and functions like that of a person without OUD.
Long Term Use Is a Sign of Ineffectiveness or Treatment Failure
A corollary to the perception that MAR should be a stepping-stone to full sobriety is the belief that if it is not, then the treatment strategy has failed. A common theme across groups is that long-term use of MAR is a sign that the treatment is ineffective and/or that the individual using MAR long-term remains in active addiction: Some people are in their heads when they’re on certain medications. What they think is actually helpful is probably hurting them in the long run. (Esther, Community Member) So now we have people who have been on medication assisted treatment for like 20 or 30 years. That becomes a problem because now the medication isn’t really doing anything for you. But I’m old and now it’s like I’m 80 years old and I have no desire to get off it. (Tonya, Service Provider) And I know everybody’s different, but I struggle with believing that we’re still medicating this individual 17 years later. That bothers me because have we have done the wraparound service? Have we provided them with counseling? Have we taught them how to change their mindset and how to live life clean and sober? Or are we still allowing them to continue their addiction? (Tess, Service Provider) But if you’re on it for 10 or 15 years then that’s not really helping you. (Susan, Family and Friends) You see the older people at these clinics that have been in it for 15 years. They’re hunched over, missing all their teeth, and shaking, having all these symptoms from it. I mean it’s basically justified opioid addiction on a daily basis. (Bennett, Short-term Recovery) I don’t think it works. The vast majority of people are trapped there for a lifetime. (Bennett, Short-term Recovery) I don’t think I know anybody that’s successfully weaned off Suboxone. (Trevor, Short-term Recovery)
Respondents see the need for continued use as a clear sign that the treatment is not helping, but higher rates of return to use and overdose among those who go off MAR indicate otherwise. Those in recovery perceive continued use of MAR to be a trap, in part because they have seen so many fail to wean successfully off treatment medications. Some individuals who continue to use MAR despite this deterrent describe MAR as punishment for their previous substance use.
I’m hesitant to say I’m in recovery because I feel like I’ve screwed my life up on drugs for so long that I’m going to methadone for like four years. (William, Short-Term Recovery)
In the case of William, he sees longer-term use of MAR as the continuation of a pattern of mistakes. He has internalized the notion that long-term use of MAR signals a treatment failure rather than recognizing that maintaining recovery for four years with the use of MAR is a success. These perceptions within the recovery community may reflect real problems that occur when people use MAR without the benefit of a fuller treatment plan that includes attention to social, psychological, and behavioral aspects of SUDs. A person in recovery who pursues a holistic treatment plan and continues to need MAR to maintain long-term recovery may be in a healthy recovery while using MAR long term.
Stigmatizing Views Generate Pressure to Avoid or Discontinue Use of MAT
The external and internal hostility toward MAR appears across groups and creates an environment in which, for some, MAR is a last resort treatment. Some suggest that MAR is justified if abstinence has not worked, but their comments imply it should not be the first option—prescribed medications are an acceptable treatment only after the person exhausts all other options: If someone has already tried to go cold turkey and it hasn’t worked, then maybe the medication assisted treatment would work. (Sadie, Community Member) My community has been approached with the idea of bringing a Recovery Clinic, a methadone clinic, and the outrage in that community is just you know, and I don’t know what the answer is. If I could be shown yes, this scientifically assists them, and I believe fully any of those who have a need for medical assisted recovery in a variety of areas should have it. But the negative connotation is so overwhelming. Nobody wants to be in the neighborhood. (Jamie, Community Member)
Stigmatizing perceptions of MAR manifest as an environment of constant pressure on individuals to use MAR only in the short term. Across groups, participants express these expectations, and some participants note that this shared pressure influenced relationships between groups. For example, families and service providers may experience tension when providers keep patients on MAR for an extended period: I’ve had patients who come in and at first . . . They’re motivated to change, and their family is supportive. But, as the journey goes on, they’re supposed to be out, their family is turning, as three or four years happen. Even though that patient has continued progressing and is doing good in their recovery program and working appropriately. Sometimes years down the road it can happen because that family is turning on them, as they continue to stay there, and they’re not tapered and they’re not out of there. So long-term, I feel like sometimes the family can change their opinion. Even though I’ve seen family be negative at first and then when they see the progress, they’re like oh it’s really working for them. As they’re there a long time, it turns again. (Kelly, Service Provider) I have also known a person that had been on methadone for years. I’m thinking, how long can they keep that? That’s where I think the doctors in the clinic should say “okay, you know it’s time you’re off . . . 14–15 years is a long time. (Susan, Family and Friends)
These positions can play into the moral failing frame by assuming that one can simply decide not to engage in the problem behavior without need for medication. Because addiction to opioids changes the reward circuitry of the brain in ways that affect cognition, emotions, and behavior SAMHSA 2021) this expectation is out of reach for many and yet the expectation remains and becomes a key component of stigma around MAT.
For those in recovery working to achieve and maintain abstinence, it is a challenge to balance this short-term expectation with the reality that some individuals need to be on MAR long-term: I don’t plan on being on methadone forever . . . I think that it’s a short-term medication. Well, I guess some people stay on it long-term, but I think that it should be something short-term. I don’t want to speak for anybody, [use it] for however long it works for you. I don’t want to plan to be on it forever. (Karen, Long-term Recovery)
Structural and public stigma ensure those in recovery receive messages that ongoing use of MAR is not consistent with recovery. While criminalization of opioid misuse is an obvious form of structural stigma, use of MAR to support successful recovery also engenders structural and service provider stigma in recovery. Some face discrimination in housing and employment because of the criminal record and discrimination in recovery housing as the result of using MAT: And the main thing is I cannot find a sober living facility that would take me because I’m on Suboxone. That right there proves that my theory is right that Suboxone is just substituting one for another. Cause I mean sober living obviously isn’t me on Suboxone which sucks really. (Georgia, Short-Term Recovery)
Individuals who face tension between their long-term use of MAR and public and service provider expectations of short-term use may perceive their recovery through the eyes of others. This perception may contribute to a sense of failure and self-stigma. An individual in recovery may taper their use of MAR and pursue abstinence, regardless of whether the case clinically indicates abstinence as an avenue for safe and effective recovery. These stigma-informed treatment decisions may place them at greater risk for treatment failure, further reinforcing self-stigma.
Discussion
Community members, service providers, family and friends, and many in recovery share narratives about the use of MAR that are consistent with an abstinence-based definition of recovery. Comments across stakeholder groups reflect a stigma complex operating at the level of policy and institutions (structural stigma), community (public stigma), organizations (provider-based stigma), family and others who fear negative social assessments based on their own association with the person using MAR (courtesy stigma) and internalized acceptance of negative stereotypes (self-stigma). Participants cite concerns and apprehension toward MAR and share an underlying perception that the use of a pharmaceutical to treat OUD simply trades one substance for another. This stigma manifests across groups as the belief that MAR should be a stepping-stone to full abstinence and that long-term use of MAR is a sign that the treatment is ineffective or has failed. The impacts of this widely shared stigma are especially evident among those in short-term recovery, many of whom express certainty that MAR is a stepping-stone from which they or others will transition to “sobriety.” These narratives shape the recovery system and the social ecosystem that those in recovery must navigate.
The attitudes and perspectives reflected across the public, treatment organizations, family, friends, and even others in recovery all shape the views of the individual struggling with OUD (Marshall, Maina, and Sherstobitof 2021; Pescosolido and Martin 2015). If community members, service providers, family and friends, and even those trying to manage recovery all hold up abstinence as the standard for health, those with OUD may be set up to fail. The looking glass self leads those seeking treatment to internalize the stigma around MAR and set abstinence as their own standard for recovery (Smith et al. 2016), regardless of what their mind and body may need to heal. This may lead people in recovery to reject MAR as a path to recovery or to discontinue use prematurely, leading to relapse and increasing the risk of fatal overdose (Bentzley et al. 2015). Instead of perceiving themselves as seeking effective treatment for a chronic disease, individuals instead perceive the use of MAR as a moral weakness or as penance for previous substance use. These self-devaluing perceptions serve as a barrier to treatment initiation and recovery maintenance (da Silveira et al. 2018), and set abstinence as the one true form of recovery.
Across groups, MAR was viewed as a method to avoid withdrawal. This perception is in line with the traditional practice of using medications to manage acute withdrawal symptoms during medically supervised withdrawal from opioids (Darke and Hall 2003; Hewell et al. 2017). Considerable evidence suggests that for most who suffer from OUD, among current options, MAR provides the greatest increase in length of time to use, reduction in relapse, and reduction in overdose (Ma et al. 2019; SAHMSA 2018; Volkow et al. 2014; Ward et al. 1994). Research indicates the stepping-stone model, endorsed by all stakeholder groups interviewed, is not an optimal strategy in most OUD cases (Dunlap and Cifu 2016). In fact, those who discontinue use of MAR are more likely to return to opioid use and are at higher risk of opioid overdose (Andraka-Christou et al. 2021; Wines et al. 2007). Clinical guidelines discourage rapid tapers as treatment for OUD (Dunlap and Cifu 2016). Despite the evolving recommendations against rapid tapers, public, provider-based, courtesy, and self-stigma against MAR as long-term treatment continue to limit socially acceptable timelines for use of MAT.
Providers are sure that with sufficient wrap-around services and psycho-social supports someone in effective recovery should not need MAR long term. Research, however, does not support these perceptions. In fact, those who taper off and/or undergo medically supervised withdrawal (Amato et al. 2011) have fewer days in treatment, engage in more high-risk behaviors, and are less likely to continue recommended care (Fiellin et al. 2014; Gruber et al. 2008; Ling et al. 2005, 2009; McCusker et al. 1995; SAMHSA 2021:1–9; Smyth et al. 2010; Strang et al. 2003; Wines et al. 2007). Studies find better outcomes when supervised withdrawal includes intensive psychosocial support, but even with those supports, those who discontinue MAR are more likely to return to use (Amato et al. 2011; Sees et al. 2000).
Currently, medicine does not have a long-term fix for the physiological impacts of heavy long-term opioid use, so maintenance medications are an important part of the toolkit for long-term recovery. SAMHSA recommends that “decisions be tailored to patients’ medical, psychiatric, and substance use histories; to their preferences; and to treatment availability” (SAMHSA 2021:3–10). This approach reflects scientific evidence that embraces the effectiveness of MAR and recognizes the utility of each medication amid varying needs of those in recovery. Stigma toward MAR places this integral treatment out of reach for many, but among those who have witnessed or experienced successful recovery from OUD using MAR, we hear new narratives emerging that counter the stigma.
Those in recovery often remind themselves that different people will experience successful recovery in diverse ways. They deploy this cognitive tool as they acknowledge they may have to use MAR and may have to use it for longer than they would like. This acknowledgment appears to be part of reaching long-term recovery, but it is also an important way to counter feelings that may emerge from the tendency to see oneself through the eyes of others and to internalize multiple layers of the stigma complex.
New narratives make room for one to recognize the value of MAR, and to understand that some individuals in recovery may need to engage MAR long term. Shifting from a paradigm of addiction as a moral failing to a medical model can help individuals and institutions recognize that maintaining health and well-being may require ongoing use of medication to manage physiological changes resulting from long-term opioid use (Rogers et al. 2018; SAMHSA 2021:1–8). Such a shift provides room to remove the abstinence requirement from notions of healthy recovery. The current model already embraces the crucial importance of positive engagement, healthy coping mechanisms, daily routines, and adoption of a stable and productive life. A handful of respondents draw parallels between MAR and insulin use among diabetics. A couple of people in long-term recovery and one in short-term recovery take a more flexible approach to seeing use of MAR as a form of sobriety that makes sense if it means one is otherwise healthy and productive.
The handful of examples of narrative shift are promising but remain set against overwhelming consistency in the themes of MAR as trading one drug for another, a detox stepping-stone, and of long-term use of MAR as a sign of treatment failure or ongoing addiction. The prevalence of these themes from micro-level interactions to system-wide macro-level mental models and frames that drive public policy and community response suggest the need for education and reframing at every level. In our sample, a handful of community members seem willing to defer to science. These respondents will accept MAR as effective treatment if providers support it as effective treatment. Our findings suggest that meso-level institutional and organizational changes in service provider organizations and micro-level changes among individual service providers may be leverage points for shifting community attitudes as well as reshaping the expectations and perceptions of family and friends and those in recovery.
This narrative shift to a health and wellness model with multiple paths to and continua of recovery allows long-term use of MAR to be consistent with successful recovery. Under this frame, expectations for MAR can shift from stepping-stone to flexible tool to support physiological as well as psychological and social recovery, and use of MAR can be destigmatized from institutions to communities, providers, families and friends and individuals in recovery.
Conclusions
Individuals exist and make choices within a social ecosystem that shapes how they understand facts, the value judgments they make, and what they consider to be rational or desirable in a given situation. In the case of MAR from OUD, each layer of the social ecosystem is shaped by the larger units in which it is nested and the individuals and units that comprise it. Public policy sets terms that imply that OUD is a crime rather than a healthcare dilemma. Communities respond with social norms that isolate and “other” those who suffer from OUD. Culturally, U.S. society has framed OUD as the result of moral weakness that leads to poor choices. Criminal justice is the primary responding institution and even when health and mental health organizations are tasked with preventing, managing, and responding to OUD, those who work in these organizations may bring the context of criminalization, a moral failing frame, and a definition of recovery that requires abstinence to their work. These layers of the social ecosystem shape how family and friends understand and respond to OUD and how those with OUD define recovery and set goals for their own progress. Among these layers, at the micro and meso levels, service providers influence how communities, groups, and individuals understand the role of MAR.
Even as service providers recognize the utility of MAR, many qualify its effectiveness within a timeframe of short-term use. As such, some providers note a sense of urgency in transitioning their clients off MAR. Though this practice is in line with traditional use of MAR (Darke and Hall 2003), clinical guidelines suggest that the longer an individual is on MAR, the more effective the treatment (Ma et al. 2019; Magura and Rosenblum 2001). Despite this shift toward long-term treatment as the standard of care, many service providers we spoke with are sure that with wraparound services, long-term use of MAR does more harm than good for their clients. To improve support for harm reduction and to increase flexibility toward varying paths to wellness, the translation of scientific research into clinical practice among direct service providers needs to improve. Those in the community, family and friends, and individuals in recovery may perceive service providers as sources of legitimate authority on what constitutes recovery. This means their perspectives carry more weight and shape individual, family and friend, and community portions of the ecosystem in important ways. Translation science can provide education in current research and clinical practice guidelines surrounding effective implementation of MAR. MAR may need to be integrated into primary care and other treatment settings and/or be provided in locations that can accommodate treatment flow without creating the stigmatizing public visual of long lines of people in recovery from OUD that OTP facilities generate.
Service providers are a critical point of contact in reducing stigma and increasing support for harm reduction among family, friends, and microsystem supports. While changes in institutional and organizational structures are integral in changing mental models, improving support for harm reduction measures among family and friends is necessary to build a frame upon which social change can occur (Heijnders and Van Der Meij 2006). As such, providers should include family and close friends in discussions about expectations for their loved one’s recovery, the vital role of MAR in recovery maintenance, and the diversity of individual recovery courses. Much of the stigma attached to MAR is associated with the mismatch between expectations and reality. Families who start out supportive but see long-term use of MAR as a sign of treatment failure, may be better equipped to support their loved one’s recovery if they understand that their loved one’s chances of avoiding substance use or overdose and maintaining a productive life are highest if they continue maintenance treatment with methadone, buprenorphine, or naltrexone. Increased access to well-educated and supportive social systems are an integral piece of the puzzle in effective recovery maintenance for those with OUD. But research indicates that education is not enough—cultural representations, storytelling, and positive images of people living productive, highly functional lives while using MAR are essential to changing mental models. The effectiveness of this strategy will rely on engaging community members to lift up success stories, service providers to educate families and individuals in recovery, and peer support groups to shift expectations and structures of support and recovery capital to embrace MAR as an effective long-term strategy.
Findings from the current project corroborate prior research that pervasive stigma against MAR influences the recovery course of an individual struggling with OUD (Andraka-Christou 2020; Hewell et al. 2017; Rogers et al. 2018). This study extends use of the social ecological model from a focus on response to the epidemic (Rogers et al. 2018) and the treatment seeking process (Hewell et al. 2017) to unpack the structure of stigma surrounding MAR. The findings highlight the persistence of stigmatizing views among the very providers that guide recovery paths and demonstrate the consistency of these narratives across the groups that surround individuals in recovery. These data contribute to growing attention to the ways the stigma complex, rooted in a cultural expectation of abstinence born in Prohibition and supported by the 12-step model for recovery, may lead to ineffective use of the best available treatment for OUD. Findings suggest that stigma resulting from the mismatch between expectations and the real need for long-term use of MAR may lead to continued social isolation or a re-emergence of isolation when use of MAR goes beyond a detoxification or stepping-stone stage of recovery. If MAR is perceived as trading one drug for another with no attention to qualitative differences between active addiction and medication assisted recovery, the stigma surrounding MAR will deter appropriate long-term use and limit individuals’ access to the full support of community members, service providers, friends and family, and the recovery community.
MAR is highly effective for many people, but it is not effective and preferred in all OUD cases. Advances in neuroscience indicate genetic testing and real-time imaging may improve the ability of physicians to identify who will respond best to agonist, partial agonist, antagonist, and abstinence approaches (Gold et al. 2020). Such advances will bring welcome developments in treatment and recovery. For the current state of treatment, as well as a future when we can fine-tune treatment to individual needs, dismantling stigma around long-term use of MAR is essential to recovery success.
Limitations
While the qualitative nature of this portion of the study allows participants to speak openly about their opinions toward MAT, the methodology has limitations. Due to the complications of scheduling in-person focus groups, the sizes of each group varied, with the smallest group consisting of two individuals. These varying group sizes may have affected the participants’ willingness to share their opinions candidly. Though the study team took steps necessary to mitigate this possibility (such as member-check focus groups), these later groups also may have been influenced by individuals’ comfort in sharing opposing opinions in group settings. While this paper does not explore the ways that SUDs reflect social dis-integration, the data from this project suggest that feelings of extreme social isolation can be an important motivation for treatment. Further research surrounding the relationship between substance use and social isolation, and its influence on wellness outcomes, is necessary to identify better means to support individuals working against the inherently dis-integrating nature of OUD.
Supplemental Material
sj-docx-1-jax-10.1177_19367244231159096 – Supplemental material for Medication Assisted Recovery: A Social Ecological Approach to Understanding How Stigma Shapes Effective Use
Supplemental material, sj-docx-1-jax-10.1177_19367244231159096 for Medication Assisted Recovery: A Social Ecological Approach to Understanding How Stigma Shapes Effective Use by Melissa S. Fry, Katie Shircliff, Mariah Benham, Tessa Duncan, Kevin Ladd, Misty Kannapel Gilbert, Mary Jo Rattermann and Melissa A. Cyders in Journal of Applied Social Science
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Indiana University Addictions Grand Challenge Program.
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Supplemental material for this article is available online.
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