Why People Who Inject Drugs Voluntarily Transition Off Methadone in Ukraine

Abstract

Methadone maintenance therapy (MMT) treats opioid use disorder among people who inject drugs (PWID). To understand why PWID may voluntarily discontinue MMT, we analyzed data from 25 focus groups conducted in five Ukrainian cities from February to April 2013 with 199 participants who were currently, previously, or never on MMT. Using constant comparison method, we uncovered three themes explaining why PWID transition off MMT: (a) purposeful resistance to rigid social control associated with how MMT is delivered and to power asymmetries in provider–patient relationships, (b) self-management of a PWID’s “wounded identity” that is common in socially stigmatized and physically sick persons—MMT serves as a reminder of their illness, and (c) the quest for a “normal life” uninterrupted by daily MMT site visits, harassment, and time inefficiencies, resources, and social capital. Focusing on holistic principles of recovery would improve addiction treatment and HIV prevention in Ukraine and globally.

Keywords

methadone maintenance therapy people who inject drugs recovery HIV prevention Ukraine adherence social construction illness and disease inequality social issues Eastern Europe focus groups thematic analysis

Introduction

Although HIV incidence and mortality have decreased globally, they have increased in Eastern Europe and Central Asia where the epidemic remains volatile and concentrated among persons who inject drugs (PWID; Joint United Nations Programme on HIV/AIDS [UNAIDS], 2015). Heroin use is growing and PWID in this region mostly inject opioids (United Nations Office on Drugs and Crime [UNODC], 2016). Ukraine’s HIV epidemic is the worst in Europe with estimated 1.2% HIV prevalence in adults, 223,000 people living with HIV (PLH), and more than 14,000 new HIV infections uncovered annually (UNAIDS, 2016). Ukraine’s opioid injection epidemic parallels HIV epidemic. HIV prevalence among PWID in Ukraine is 20% nationally, and exceeds 40% in some regions (Booth et al., 2016; Zaller et al., 2015). An estimated 310,000 PWID account for the majority of cumulative HIV cases; yet, coverage with opioid agonist therapies (OATs) such as methadone maintenance therapy (MMT) or buprenorphine maintenance therapy (BMT) remains below 3% (Degenhardt et al., 2013). Despite Kyiv’s mayor committing to the UNAIDS Fast-Track approach to end the AIDS epidemic by the year 2030, expansion of HIV prevention and treatment services even in Kyiv and throughout Ukraine is hindered by stigma toward PLH and PWID and inefficiencies in resource allocation and health service delivery.

Central to HIV prevention and treatment efforts for Ukraine is scaling up OATs and particularly MMT, as the majority (>90%) of OAT patients are prescribed methadone. Decades of research affirm that OAT is both an effective treatment for opioid use disorder (OUD; Amato et al., 2005; Mattick, Breen, Kimber, & Davoli, 2014) and the most cost-effective strategy to reduce HIV in Ukraine if it is adequately scaled to need (Alistar, Owens, & Brandeau, 2011). A recent systematic review and meta-analysis suggests that OAT effectively increases initiation of antiretroviral therapy (ART), retention in HIV care, and viral suppression (Low et al., 2016). Data from Ukraine indicate that PWID on OATs improve engagement in HIV care along the entire care continuum (Mazhnaya et al., 2016). Moreover, MMT reduces HIV transmission among PWID by half, and reduces the rates of criminal activity, recidivism, and drug use (Altice, Kamarulzaman, Soriano, Schechter, & Friedland, 2010; MacArthur et al., 2012; MacArthur et al., 2014). Despite its effectiveness, OAT is markedly underscaled in Ukraine (Bojko et al., 2016) due to moral biases and prejudices toward PWID (Bojko, Dvoriak, & Altice, 2013) and persistent criminalization of OATs and harassment of PWID by police (Izenberg et al., 2013; Kutsa et al., 2016; Mazhnaya et al., 2016).

The process of scaling up OATs involves both reducing barriers to treatment entry and solving issues of low retention (or dropout). In numerous studies, retention in treatment is a key factor associated with improved outcomes for opioid-dependent PWID (Farre, Mas, Torrens, Moreno, & Cami, 2002; Timko, Schultz, Cucciare, Vittorio, & Garrison-Diehn, 2016). In addition to its documented HIV prevention and treatment benefits, OAT also reduces relapse (Clark et al., 2015). A recent study found that forced discontinuation of MMT (e.g., when a methadone patient is incarcerated in a facility that does not have MMT access) leads to higher risk of overdose and death upon release (Rich et al., 2015). Conversely, retention in the MMT program is associated with long-term positive outcomes such as reduced comorbidities through better adherence to ART for HIV treatment, lower rates of recidivism and reincarceration, and improved family relationships and employment prospects (Bao et al., 2009; Wickersham, Marcus, Kamarulzaman, Zahari, & Altice, 2013). But perceived lower family support as well as lower methadone dosage at 3 months after starting MMT was associated with higher risk of dropout from MMT in the 18 months after the start of treatment (Lin et al., 2013). Dropout from MMT was also associated with concurrent illicit drug use (White et al., 2014). Despite this knowledge, patients in Ukraine continue to purposefully discontinue and transition off MMT (e.g., by lowering their dose and eventually tapering off methadone) for a number of inadequately described reasons, which are further explored in this article.

Method

Data Collection

From February to April 2013, a large qualitative descriptive study involving 25 focus groups with 199 PWID was conducted in five Ukrainian cities—Donetsk, Lviv, Odesa, Mykolaiv, and Kyiv—to understand what shapes MMT access and retention. Local research assistants used purposive sampling methods to recruit PWID meeting criteria for opioid dependence, according to three categories: those who were currently on OAT, those who had previously been OAT patients, and those who have never been on OAT. Focus group guides included questions about participants’ access to OAT and whether they received any social assistance, health beliefs, and attitudes toward OAT—both their own and what they observe in others, and participants’ views on successes and shortcomings of OAT programs and any recommendations they may have for change. PWID who agreed to take part in the study signed informed consent forms before participating in focus groups. On average, there were eight PWID in each of the focus groups conducted in each city. Participants spoke Ukrainian and/or Russian during the focus groups. All audio-recorded and transcribed focus group sessions were translated into English and selectively back translated for proper interpretation (Brislin, 1970).

Data Analysis

This “parent” study produced a large qualitative data set to be used by focused projects to answer various research questions related to what shapes MMT’s access and retention. Initial coding of the focus group data was conducted by four trained researchers. Two of them independently coded the transcripts with each focus group using MAXQDA software, a qualitative data management package designed for text and content analysis (VERBI, 2016). When differences in coding emerged, consensus was reached by discussion among the coders. The detailed description of recruitment, data collection, and primary coding and analysis of the focus group data is provided in earlier publications from this study (Bojko et al., 2015; Mazhnaya et al., 2016).

Focus group data allow researchers to elucidate and analyze the socially constructed narrative, whereby participants discussed and developed shared understandings around specific questions suggested by the researcher (Liamputtong, 2011). By responding to each other’s views, participants weave individual viewpoints into a collective narrative that may be analyzed for insights into the meanings made of social norms and values within the cultural group in the specific context (Vilar, 2015). According to the Thomas theorem, “if men define situations as real, they are real in their consequences” (Thomas & Thomas, 1928, 571-572). Likewise, meanings that focus group participants express through interaction and discussion are perceptual categories, based on which individuals who perceive them as true, base their assessments and judgments.

Symbolic interactionism may be especially useful for informing focus group data analysis by paying attention to how people understand themselves through the eyes of others with whom they interact and whose points of view matter to their sense of identity (Blumer, 1969). In the current analysis, we focused specifically on the participants’ experiences of tapering off methadone and/or voluntarily discontinuing MMT. In the transcripts, methadone, opioid substitution therapy (OST), and OAT are used interchangeably.

Using a method of constant comparison and symbolic interactionism as well as stigma theory as guiding conceptual frameworks, we utilized the “discharge,” “withdrawal,” “societal norms,” “relapse,” “abstinence,” “stigma,” “disadvantages,” “dependence,” “attitudes,” “way out,” “fear,” and “life” codes from the qualitative data set. To choose these codes, we read through the data under every code in the database and selected all codes that illuminated how PWID perceive methadone treatment and themselves and/or in what (individual/cultural/structural) context participants talked about getting off methadone. Collectively, these 12 selected codes provided more than 300 pages of textual data. We analyzed these data by carefully reading the text under each code, that is, “discharge,” discussing the key themes of the participants’ stories that we discerned within each code. Three universal themes emerged across all the codes and we refined them by rereading the data, checking for negative cases that may refute the emerging themes, and discussion. In data analyses, we included the perspectives of PWID who were currently on MMT alongside the perspectives of individuals who stopped MMT or were never on it to triangulate the emerging story by multiple sources of information (Patton, 2015) and to obtain the richest and most comprehensive understanding of why PWID discontinue MMT. About one third of participants (previously on MMT) had personal experience of transitioning off methadone, and others (never on MMT and currently on MMT) had observed others doing it and thought about it. We treated all these insights as equally meaningful and valuable as the discourse furthered our understanding of meanings around MMT tapering off and discontinuation held by PWID in Ukraine. We strove to make our analyses as rigorous as possible through weekly discussions of our evolving findings among the authors who brought different disciplinary perspectives to interpretation of the data. We also considered whether alternative interpretations could be possible as we built our understanding of why PWID voluntarily discontinue methadone.

Ethics

All aspects of the study were approved by institutional review boards at Yale University (USA) and at the Ukrainian Institute on Public Health Policy and the Gromashevskiy Institute at the National Academy of Medical Sciences (Ukraine). Pseudonyms were used in the presentation of data.

Results

The participant characteristics have been described previously (Bojko et al., 2016; Mazhnaya et al., 2016). Two thirds of PWID in focus groups were men, and the participants’ median age was 38 years. The majority (83%) of participants reported they had been officially arrested in the past, predominantly in relation to illegal drug activities (Mazhnaya et al., 2016). Participants who had not been arrested still had experience of police involvement, including harassment, regardless of whether or not they participated in an MMT program. Based on extant knowledge about the specificity of addiction treatment, we expected that in dealing with PWID, MMT clinical programs may exhibit some punitive elements (Joe, Simpson, & Rowan-Szal, 2009), and we found a deep asymmetry in provider–patient relationships. We discerned three overarching themes in the narratives that provided insights into why participants might choose to voluntarily discontinue MMT.

Theme 1: Voluntarily Discontinuing MMT as Resistance to External Social Control

Globally, MMT delivery is often strictly supervised to avoid diversion and overdose, and this is the case in Ukraine. Social control could take the form of being at constant risk of administrative discharge or of detainment by police, and participants’ keen awareness of these risks shaped their interest in discontinuing MMT. Other instances of social control were that patients must travel daily to receive treatment (7 days per week) during limited hours of operation, that they cannot earn “take-home doses,” and that they must remain at the program until they receive their dose, which could be extensive due to logistical issues. As one participant formerly on MMT from Lviv noted,

They are supposed to start giving us [methadone] at half past eight, but then they have problems with the lock box or something else—so they start when it’s half past ten or eleven, then you come back home and it’s two o’clock.

Long waiting time spent at the MMT site, however, was also fraught with additional environmental factors that made MMT less attractive, including interaction with what patients perceived as hostile and suspicious providers, other patients with whom they did not get along, and the police who were frequently present at or near the sites. As Andriy, a participant previously on OAT from Lviv, said about being at the MMT clinic,

we are like a wide pool, so if they’ve got no work at the police station . . . they take a couple of cars and drive here—boom! They take a couple of our patients, and now they’ve got some work: they’ve got someone to beat up, to insult, to do things to, you know?

Sergey, a participant previously on OAT from Donetsk, expanded on how the police interfered with their lives, specifically that the MMT providers coerced patients by threatening to call the police:

It does not matter for them [providers] what kind of a person you are. They press the button and police would arrest you for two weeks.

MMT clients remained perpetually in fear of both providers and the police, understanding that their safety and liberty was provisional. Clients felt disempowered because providers could “press the button” (i.e., threaten police intervention) whimsically, irrespective of the magnitude of the behavior. For example, knocking on the clinic door, speaking in a voice that was perceived as too loud, or even remonstrating with the provider for what the patient viewed as lack of respect, could be leveraged to control the client. Besides involving or threatening to involve police, a sanction that participants believed providers frequently used against patients for various perceived transgressions, was to be “thrown out of the MMT program” permanently or for some time as part of their “administrative discharge” proviso, which was described by a participant currently on MMT from Donetsk,

You arrive there [MMT clinic], and they go, oops! You smell like you’ve been drinking, or they can tell by your eyes. Or at one minute after twelve [the time the clinic closes] I come and knock. And if you continue knocking and try to get in, the next day they can suspend me for 15 days.

Clients feared being discharged from the program because they knew they would soon experience symptoms of withdrawal—and this would lead to seeking illegal opioids to alleviate their symptoms. They would often endure insults as Yana, a female participant on MMT from Kyiv, stated, “[because] you’re fearing the scandal” that may lead to administrative discharge. A participant from Lviv who was on OST stated,

They’d find a reason to throw me out right away. I would come with a wrong haircut. I’d come wearing a wrong coat. They would find an excuse to throw me out.

And, a participant from Donetsk continued that when thrown out,

You’ve got those withdrawals for two weeks.

Furthermore, participants had established much valued support networks among peers at the MMT site by virtue of coming together and interacting every day with the same people who shared common problems and backgrounds. Being suspended from the program risked disrupting these treasured social relationships, and patients were concerned they will do poorly without the needed peer support. As a female participant from Kyiv commented,

I’m not so afraid of this withdrawal or something else, but I am afraid to lose this circle of contacts. Simply I will not be able to manage without them, without the guys with whom I communicate every day, I share something with them and they understand me. That’s it.

Getting back on the program after the period of suspension was not guaranteed, and as participants suggested, a bribe could be necessary:

Facilitator: And is it possible to get back on the program?

(discordant simultaneous negative answers)

No, well, not always. But if you give some money . . .

Participants also recalled stories where tragic events followed expulsion from the program, such as death from overdose or suicide:

We had such cases in the program [who were banned for two weeks]. More than once. And there was one client who committed suicide. A girl was thrown out from the Beryuzova site and she went and claimed her own life. (Female participant from Donetsk)

Although the original and official purpose of the sanction of (temporarily) banning patients from MMT was to prevent the patients from concurrent drug and alcohol use and keep their behavior on the site in order; as the above excerpts suggest, participants generally perceived that providers abused their power and repeatedly made patients disprove accusations and charges, that in the patients’ eyes were ungrounded. The Order No. 200 of the Ministry of Health passed shortly before the focus groups in 2013 revised the rules regarding continued participation in MMT programs. Doctors were authorized to judge whether a temporary relapse to alcohol or to street drug use were sufficient grounds to discharge a patient:

In the past we could tell the doctor we had injected and relapsed, but now we are careful about it. After the adoption of the MoH Order 200 we cannot come and confess to the doctor about the relapse because we would be thrown out immediately. (Female participant from Kyiv)

In the participants’ view, revising programmatic regulations went concurrently with some providers’ corruption: Participants suggested some providers abused their power over clients to extort money for continued participation in the program even when no violation had taken place, or threatened clients they would be banned from the program should they complain or report mistreatment. Two female participants from Donetsk pointed out the following:

There were even some articles in the mass media, other OST program clients wrote it. So he [narcology doctor] got them to his office, those people who were writing things, and told them: “If you go on like this, writing articles against me, you’ll be out of the program yourself.” (Vita)

You see. That’s a very good method to make people shut their mouth. (Katya)

Keeping up with the rules in what felt like an unfair game rigged against them by those in the position of power and authority (providers aided by the police) seemed like futile Sisyphus’s labor to participants. Thus, rather than wait for an administrative discharge and a permanent or temporary dismissal from the program by providers, participants described how patients transitioned off methadone and discontinued therapy to quit on their own accord. In moral terms, this gave participants a sense of redemption and agency vis-à-vis discrimination and disempowerment. Patients also felt less vulnerable to withdrawal and other possible risks associated with being suspended or forced to quit the program. As providers used the sanctions frequently, patients rushed to beat them in the game, tapering off and discontinuing MMT earlier and more rapidly than would have been clinically or socially feasible. As Sonya, a female participant from Donetsk suggested,

So lowering it [Methadone] step by step, I hope to get off . . . that’s my plan . . . And what’s the alternative? They [providers] have got this punishment [administrative discharge]. If you say or do something wrong or look at them not the way they want you to, they just throw you out!

Even when experiencing withdrawal symptoms, patients felt it was impossible for them to return to the program, as this would be admitting defeat:

I left after I had a row, and besides there were many other aspects which all came together.

Moderator: And have you ever tried to return?

No, I haven’t. Because going there and meeting the same people who would be giving [methadone] to me, I would contradict myself, my principles. (Slava, Donetsk, previously on OST)

Discontinuing methadone was fearsome, and participants agonized about decision to do so in the abundance of rumors about what will happen if/when they discontinue treatment. As a male participant from Lviv who was on OAT for over a year explained,

I am very much afraid [of] some kind of withdrawal from these pills [methadone] that it makes the hair rise. Here people say that for months on end it blows up your mind. I fear the withdrawal after these pills.

Theme 2: Discontinuing Methadone as Management of Wounded Identity of Very Sick “Subhumans”

To fully understand why the patients could be tempted to resist morbid social control in the MMT programs by discontinuing treatment, it is important to examine how patients believe others perceive them and also how being on methadone was an unwanted “marker” of being a person with a substance use disorder. Participants believed that society conceived of persons with OUD in the most negative and inferior terms. In the words of Anya (Lviv, previously on OAT),

If you are a drug user, you are a thief, a liar, and a rapist.

Not only did OAT fail to redeem a person with OUD from this derision, but patients also perceived themselves as relegated within the social hierarchy below those actively injecting illicit drugs, in the eyes of both MMT providers and peers. Their lower status stemmed from the perception that “drug users” came to the OAT program when they became too sick and too broke to pursue street drugs. Whether or not this was the prevailing reason for entry, as participants suggested, it was a common belief, and thus, patients were viewed as sicker and in worse shape than “drugs users in general.” As Oleg, a participant on OAT from Mykolaiv, suggested,

I am using drugs for a long time, and so in our community among my friends there is such an opinion that . . . Methadone is the last step you can make . . . and not the best. So I kept and kept using drugs but then the time came when I did not have a job and was out of money, and I was using drugs systematically. So . . . that’s what I thought: you go and take it not to treat yourself but . . . just switch from hopping around to getting it all legally.

Lilya and Ruslan, other participants on OAT from Mykolaiv, reiterated Oleg’s statement, suggesting that peers thought of those who had started OAT as they had developed comorbid conditions, their addiction worsened, and, as a consequence, they had become unable to obtain money through work or other means. Said Lilya and Ruslan,

If someone joined this OST program, they [peers] said, pooh, that’s really bad. Really bad. Tsk, tsk! It’s like you are at death’s door as they say.

This compromised health status in the eyes of peers was also corroborated by attitudes of providers who, as participants suggested, treated OAT patients as if they would die soon anyway, and thus had low utility for good treatment and respect. As Pavlo (Lviv, previously on OAT) remarked,

This attitude to us, for many . . . medical workers we are just . . . not humans. We only look like people. Why do you need this package or why do you need clothes, if it’s time for you to start thinking about the funeral service so go get some timber to hammer together?

As this excerpt illustrates, OAT patients perceived themselves being below those injecting street drugs in the medical system’s social hierarchy due to being repeatedly humiliated by clinicians as not humans. While they risked enduring this degrading and painful experience coming to MMT site every day, peers not in the program were spared it. This double jeopardy, as participants Nikolay and Andrey mentioned, of “being junkies and besides that being sick,” meant that OAT patients had lost moral authority: Clinicians would not feel guilt for humiliating OAT patients because they were unworthy of respect. As one participant formerly on OAT from Odesa remarked,

The mentality of our doctors . . . is all wrong. They look at them [OST patients] as sub-humans.

Ira, a female participant from Kyiv, described how a provider used extremely offensive language when speaking to a pregnant OAT client, suggesting the mother and unborn baby were innate objects:

Do not deliver! A pregnant OST client—it’s the end of it! What are you going to give birth to?! Not “Who” but “What”!!! What will you deliver?

Entering the site any day, patients could witness or experience physical or symbolic violence, humiliation, and discrimination. Participants recalled being treated like animals, with providers indifferent to their basic needs and discomfort like the lack of bathrooms or excessively hot methadone solution patients had to drink up. Participants described how the OAT sites were demarcated from the rest of the medical facility as ghetto spaces for “subhumans” as opposed to spaces for “normal humans,” where other patients who were not on OAT (including possible PWID) could freely go, and where OAT clients were forbidden. Sasha, a male participant from Kyiv who was on OST, recalled,

There was a huge territory of the hospital and now the [OST] patients are not allowed to enter the hospital territory because you’re an OST patient though it’s a public space. Once having joined the program you’re trapped, you’re in your own stable where you should stay. It looks that people are there [at the hospital] and sub-humans are here [OST site]. You see the point?

In this context, tapering off methadone and leaving treatment went beyond stopping bad experiences and became a symbolic process of managing one’s wounded identity and removing all degrading labeling (as sick and/or subhuman) as nonapplicable. As Sergey, a participant from Kyiv previously on OAT, stated,

I was dissatisfied with the pit where I turned out to be. I considered myself to be a dead duck. In other words, I believed that there was nothing worse, nothing lower than this and I’m here already. [So] I left [OST] of my own free will. I did it all by myself.

Sergey and others like him felt that by discontinuing treatment, they gave themselves a chance to be seen as alive humans by themselves, peers, and providers, who had looked down on them and had written them off as virtually physically and morally dead.

Theme 3: Discontinuing Methadone as a Quest for a “Normal Life”

The third theme explaining why participants sought to transition off and discontinue MMT described their understanding of recovery that centered on the folk concept of a “normal person.” Participants such as Nazar (Lviv, currently on OAT) expressed how they longed to be “normal people” and live the way an average human being lives:

I did everything right, four years of OST are behind me . . . And what’s now? I want to live my life just as my neighbors Vasya or Petya [common male names in Ukraine] and others do. Just as everybody else. I want to be the same as my neighbor Vasya or Petya or the same as Tommy from the State of Colorado. You know what I mean?

Being on OAT was in conflict with the participants’ understanding of a normal life. As Vitalik from Lviv currently on OAT pointed out,

I’m on the free side [from street drugs] for three and a half years already. That’s thanks to this [OST] program, I agree . . . But no . . . I’m like a vegetable. You know? I don’t see any prospects. That’s how I see it, I have no future.

To a significant extent this lack of vision for the future was caused by incompatibility of participation in OAT with employment and other meaningful activities. Participants felt prospective employers would turn them down once they disclosed their daily OAT site visits, supporting the stigmatized identity of “subhumans.” Anticipated rejection from employment further marginalized and ostracized participants from the “norm” of what is accepted by society. Vitaly, a participant from Kyiv who was on OAT, said,

The situation with work . . . suppose I could tell them the following: I’m on OST and I’ve come to you, hire me. And they would go: Why are you on OST? And why have you come here, friend? . . . Just get out of here, you are lost, that’s the wrong address. In other words you’ll be rejected immediately and that’s all.

Living a “normal life” and as Ruslan, a participant previously on OST from Mykolaiv, said, “[becoming] an ordinary person in this world and a productive member of the society” was in the participants’ eyes the ultimate recovery, both in terms of health and of social status. It removed all negative particularities associated with OAT program participation such as being labeled as “subhumans” by providers, and ascertained participants as full citizens of the larger society. Participants referred to peer role models who lived “normal lives” having discontinued OAT. Describing these examples, participants invoked sociocultural markers of their understanding of “normal lives,” including stable (marriage-like) relationships, childbearing and rearing, and legal gainful employment. Masha, a female participant from Kyiv, said,

There is one girl, who left [OST]. When I joined the program 5 years ago, she could not get pregnant for a long time. And as soon as she got pregnant she left the program. And everything was fine. She gave birth to the second child already. She’s got a husband . . . She has not been using anything for 5 years.

Veronika, another female participant from Kyiv, provided another example:

It’s possible to gradually reduce the dose and quit using completely. There was Sveta here—a girl, our friend—who left the program. Once she came and said: “I do not feel [the lack of it]. I’m all right.” And she is living a normal life!

Vitaly, a male participant on OAT in Kyiv, also referred to peers he knew who had gotten off OAT, and were demonstrating successful social recovery marked by stable relationships and employment:

They’ve been participating in the program for a certain period and they realized that everything had been at the right place and they left it simply because they did not need it anymore. As the time passed—one year or how long? And that was it. Some of them got jobs, others created the families.

Participants viewed discontinuing MMT as a literal step toward “normal life,” unlike the life of “subhumans” chained to OST site like dogs (Ruslan, Kyiv). Discontinuing MMT was also a symbolic response to discrimination by outsiders aspiring to become regular members of the broader society. Oleg, who was on OST in Lviv, gave a valuable insight into how OST patients once stabilized in terms of their physical health, wished to more fully belong and participate in the society:

When you are on OST for the first year, it has its benefits . . . big benefits . . . And then, of course, you don’t want to stop where you are. You want to go further. You want to help elder people. Your parents, for example. And so on, and so forth . . . And now we wish we could get out of this semi-captivity of OST. So that it’s all over. So that we can be productive members of society.

The pathway to “normal life” was, however, marked with pitfalls. Despite knowing some success stories, participants were concerned about the lack of direction and help from the OAT program providers regarding how they could bridge to “normal life.” Dima, a participant from Kyiv on OST, suggested,

We have to resolute that in a couple of years [of OST] we don’t want injections, just live normally. But how is it—normally? How to go from this [taking OST]? How to overcome this withdrawal and this emptiness?

Andrey, also a Kyiv participant on OAT, reacted to Dima’s point, suggesting that patients leave before they are ready, while being in an unstable condition physically and socially, and do not achieve good outcomes. Patients’ yearning to have a normal life coupled with the way they interpret the message from providers—that those who quit methadone are those who get better—may play an evil trick on them:

Some people drift into emptiness, they don’t have a job, no partners and no feelings of any kind, but they hammered into their brain that they have lower the dosage, to change something in their lives.

Andrey’s excerpt suggests that putting the cart before the horse—that is, tapering off methadone while no social stability is in place—may be a desperate way some patients try to improve their circumstances when pressure of social control and of spoiled identity (Goffman, 1963) of “subhumans” becomes unbearable. Also, patients received no clear expectations of how long they would be on OAT. Given Ukraine’s relatively short experience with OAT, they were anxious whether and how the treatment may (dis)continue. As female participants Sonya and Vita pointed out,

Make a decision to be in this program till the end of my life? And what’s the alternative? I dunno . . . They said they were going to develop a system, so that if we decide to leave, we can do it. They said we had to be in this program for at least six months and then . . . they were supposed to start developing this system, but nobody saw it yet.

As patients did not receive any messages from providers indicating methadone was part of “normal life,” all their experiences suggested “normal life” could only start after methadone is finished.

Discussion

The findings from this study will inform researchers involved in addiction science and patient care, as well as offer useful insights to other stakeholders including funders, law enforcement, and local and national policy makers. By giving the voice to PWID who have been marginalized and stigmatized, the findings provide insight into behaviors that may not have been otherwise known, and contribute to knowledge development in the patient experience literature (Ryan, Hislop, & Ziebland, 2017). Findings also add to extant qualitative health research literature on how claiming normalcy as well as envisaging a future serve as tools to resolve patients’ identity dilemmas when facing prejudice and stigma (Smith, Dawson-Rose, Blanchard, Kools, & Butler, 2016; Vann-Ward, Morse, & Charmaz, 2017).

We uncovered three themes that contribute to PWID signaling that they would voluntarily discontinue MMT, at times ambivalently, despite its known benefits. These themes describe participants’ perceptions, which, because participants believe they are true, shape their choices and behaviors. Importantly, all three themes were interconnected, and in all three, participants considered voluntary discontinuation of methadone as a purposeful action of transitioning off of therapy. The first theme was discontinuing MMT as resisting social control by the addiction treatment system. Participants shared how MMT providers administratively discharged or suspended patients from the program in punishment for actual or perceived transgressions, occasionally involving the police. Participants perceived administrative discharge as unfair, demeaning, and harmful to their health. Although providers could choose patients from the wait list, patients could not choose providers, giving the latter the monopoly of granting or denying access to treatment. Given these power asymmetries and the punitive nature of addiction treatment, some patients preferred to withdraw from methadone, believing this would free them from harassment and restore their agency.

The second theme was discontinuing MMT to recover a “wounded identity” of a very sick “subhuman” perceived by providers and peers as only fit to die. As such, PWID on MMT were viewed more negatively than PWID who were still injecting illegal opioids. One potential explanation stems from the scenario by which OAT was introduced into Ukraine. Specifically, MMT was not perceived as an effective treatment for OUDs. It was not until MMT was introduced as “harm reduction” to prevent HIV that it was eventually allowed—in the wake of Ukraine having the worst HIV epidemic in Europe (Altice et al., 2016). Consequently, MMT was perceived as trading one addiction for another and not a documented strategy to achieve recovery. Moreover, as MMT was introduced in Ukraine, it faced remarkably high levels of opposition marked by negative stereotypes and myths about its effectiveness (Polonsky et al., 2015; Polonsky et al., 2016).

In the participants’ view, both peers and providers perceive that persons with OUDs only came to MMT programs when their health and financial resources were fully depleted below the average street drug user level. This, to participants, explained why providers expressed prejudice, stereotype, judgment, and repulsion toward patients being treated with methadone, not taking them seriously, and, in the context of narcology system, relegating methadone patients to “subhumans” stripped of moral authority. Thus, a provider or a police officer could humiliate or ignore a person’s needs and feelings without censure from provider or police colleagues. Whereas the first theme spoke about discontinuing methadone as a means of getting out of reach of daily insults, social controls, and punishment, the second theme took this further. Participants voluntarily discontinued MMT as a purposeful and demonstrative act of leaving the community of so-called pariahs. Individuals desired to demonstrate their autonomy from demeaning situations.

The third theme was voluntarily discontinuing MMT as a transition toward “normal life.” This theme adds to a nascent body of qualitative health research examining how patients’ views on “normalcy” and “being normal” are significant drivers of their health behaviors and choices to engage or not in treatment (Rozanova et al., 2016; Smith et al., 2016). In our study, participants enumerated attributes constituting, in their view, a “normal life.” Having adhered to MMT for several years (and likely having endured the issues described in the previous two themes), participants wished to progress in recovery. To them, recovery meant living a life of an average citizen complete with legal gainful employment and family responsibilities, to which daily visits to the site were viewed as an obstacle. Participants did not see how MMT could have long-term place in achieving a “normal life” primarily because their perception of recovery did not incorporate MMT as a helpful part of the process. They became inspired to leave MMT program by stories of peers who had done so in the past, and were no longer using opioids, working, and enjoying parenthood and stable romantic relationships, despite research suggesting that as few as 15% would remain abstinent from drugs within 1 year without MMT (Kreek, Borg, Ducat, & Ray, 2010).

Although participants appreciated risks of relapse, overdose, or reincarceration after discontinuing MMT, and feared more painful withdrawal than after discontinuing street opioids, they perceived the risks of being administratively dismissed from the program and being profoundly humiliated as worse. Simultaneously idealistic and pragmatic, participants suggested that patients on MMT wished to be an exception (i.e., recovering in the sense of getting off any treatment and living a “normal life” without any therapy) not the rule (i.e., admitting one has a chronic disease and continuing treatment indefinitely and, thus, enduring all the associated concerns).

Recent research elsewhere suggested that program-related factors (e.g., type of program, history of prescribing adequate MMT doses) have higher predictive power regarding retention in MMT than factors related to individual characteristics (Fathollahi et al., 2016). Although extant studies conventionally consider dropping out of treatment as an important measure of treatment’s ineffectiveness, there is limited research considering why patients may choose to purposefully discontinue treatment and whether they can view it positively (Bentzley, Barth, Back, & Book, 2015). Our findings add to extant literature by pointing out how patients’ discontinuation from treatment is shaped by their own understanding of recovery that has not been sufficiently examined (Ling, Farabee, Liepa, & Wu, 2012) or supported by the evidence. We found that patients’ meaning of recovery centers on “normal life,” and within the local culture, long-term therapy is perceived as a hindrance to this achievement. Yet, many patients describe receiving MMT as allowing them to get their pre–drug-using life back (Anonymous, 2016). Importantly, the data were collected in 2013 prior to national efforts to introduce treatment improvement processes to scale up MMT coverage by changing the structure of the clinical care setting and related policies. This study captures original, preintervention issues regarding voluntary discontinuation from MMT in Ukraine, and it would be essential to examine whether changes in the service delivery altered how patients experience the system.

It is important that all participants’ perceptions about voluntarily discontinuing methadone therapy were embedded in their lived experiences within a punitive and proscriptive narcology system, where patients must adhere to disciplinary action for any of small infractions—which further compounds the many layers of stigma that burdens them. Findings here echo research in the United States uncovering how drug policy shaped the social construction of opioid drug offenders as a deviant population contained through incarceration and punishment, to the detriment of public health goals (Neill, 2014). Endogenous drug stigma became internalized and exogenously shaped patients’ decision making, for example, when they purposefully discontinued MMT, which they saw as part of punitive social control of drug users. Unfortunately, discontinuation of MMT could reinforce what Link and Phelan call “stigma power,” or the complex process of social exclusion, whereby patients choose to avoid the health care system but by doing so they become further marginalized and largely accomplish the outcomes stigmatizers might desire (Link & Phelan, 2014). To address this stigma power, interventions must foster genuine empathy, respect, and trust toward patients so they are not retraumatized on a daily basis, for example, by moving MMT into primary care settings. Thus, our study opens several lines for further inquiry. The first would be to fill one piece of a puzzle missing from the present account, namely, exactly how and through what practical means patients transition off and discontinue OAT in Ukraine. In many countries including Ukraine, clients must swallow their full prescribed dose in front of a clinician to prevent diversion of methadone or buprenorphine to street market. Participants alluded to negotiating lower doses with providers, but did not elaborate. It is possible that these topics were too sensitive to discuss in focus group format, risking to disclose violations that participants did not wish to reveal. Individual qualitative interviews may be better suited for a future study to examine this process.

The second is why patients transition off the program from the perspective of MMT providers, as well as providers’ views on patient–provider relationships. During the recent NIATx training session in Kyiv in May 2016 (NIATx is a process improvement model for health care settings to improve access to and retention in treatment through behavior change, and two of the authors have consulted on NIATx trainings as clinician experts), an MMT provider suggested that patients form tight-knit groups of friends at the site. Transition off therapy is seldom done alone; when the group’s leader transitions off MMT, the rest of the group often follows their lead. Our participants referenced this phenomenon by mentioning the importance of peer role models. This tactic needs to be explored to enhance retention strategies.

From this study, it is possible to use the reasons for leaving or staying in treatment between methadone and buprenorphine patients to design interventions to improve MMT retention and scaling up. Interventions that focus on peer supports or comradeship with others may assist with efforts to advance continued treatment. For the provider, an emphasis on engagement with the clients or motivational enhancements, which have shown favor for justice-involved clients (Scott, 2008), might be useful to pursue.

The fourth is to thoroughly examine how patients and providers understand and measure progress toward recovery. Previous research noted few reliable tools for measuring how well a patient is recovering from opioid addiction (Ling et al., 2012), and rarely taking into account the specifics of what is important for the individual patients in the context of their life. Our findings suggest that patients transitioned off therapy for reasons that were shaped by their relationships with providers, ways in which therapy undermined (or supported) their sense of identity, and their meanings of a “normal life” and its attributes. The theory of social construction and policy design (Pierce et al., 2014) suggests that existing policies (e.g., that regulate MMT provision in Ukraine or elsewhere) shape how this policy’s target population is constructed, including power asymmetries in the relationship between the MMT patients and the narcology system. In light of this theory, underlying conflicting meanings of recovery among patients, providers, and other interest groups is unequal distribution of benefits and burdens associated with MMT in these groups’ views. Exploring and comparing patients’ and providers’ meanings of recovery is key for redressing this inequality (which, even if only perceived, has real consequences), for developing new measurement tools for assessing recovery in patients, and for designing interventions with both patients and providers aimed at correcting prejudice and stereotype about MMT. Enhancing MMT retention will only be possible if it is aligned with patients’ (and providers’) goals and understandings of recovery.

This study is not without limitations. Focus groups included participants who had experience with MMT but few buprenorphine patients (not purposefully but because they are a small minority in Ukraine). The latter patients’ perspectives may differ from those of patients treated with methadone due to buprenorphine’s rarity value in Ukraine, and need to be considered in more detail. Also, although focus groups are ideal for allowing participants to collectively make sense of complicated issues, some participants could refrain from sharing their thoughts on controversial and sensitive topics in the presence of other people besides the researcher. One participant even suggested that in a one-on-one interview, they may elaborate on their answers in more detail. And, the fact that participants chose not to explain in detail exactly how they transition off methadone is an important case in point. Thus, further research should use both qualitative interviews and survey questionnaires to refute or confirm hypotheses about why and how patients voluntarily discontinue MMT grounded in our current findings.

Our findings are specific to focus group participants in the particular temporal, structural, and cultural context of the Ukrainian narcology system, but have broader implications for patients with OUDs in Ukraine and globally. Although there is a global shift to treating opioid addiction as a chronic illness, PWID in many countries including the United States interact with clinical and legal environments that include punitive elements and manifest asymmetries of power between providers and patients (Tomori et al., 2014). A recent article suggested that punitive mechanisms are ineffective in treating addictions (Ersche et al., 2016). Our study sheds new light on how lack of cooperation between patients and providers is shaped by punitive elements in their relationships, and makes suggestions for system improvement for better patient (and provider) outcomes. Importantly, empowerment of both providers and of patients with OUDs needs to avoid the pitfall of “blaming the victim” (Ryan, 1971) for their behavioral shortcomings. Moving MMT into primary care settings may desegregate patients with OUDs, and employing comprehensive strategies such as NIATx may give providers the tools for improving the structural and organizational context of the addiction treatment system.

Based on our findings, we offer five recommendations for designing interventions in addiction care in Ukraine and elsewhere. First, particularly with regard to social control (but also the two other themes), moving patients to more autonomous treatment implying trust and respect (such as take-home dosing and pharmacy prescriptions, and also moving MMT into primary care settings where patients with OUDs are treated likewise to patients with other diagnoses) may be advantageous. Furthermore, given the post–Soviet punitive narcology legacy in Eastern Europe and Central Asia countries, MMT providers may themselves experience a profound lack of agency and disempowerment that shaped their relationships with their clients. Changes led by NIATx (Quanbeck et al., 2012) and other international teams may help MMT providers in Ukraine and elsewhere feel more empowered and supported through a fledgling sense of community of practice that providers themselves have developed. Having a stronger sense of a dignified professional identity may help providers be more empathetic toward their patients’ “wounded identity” concerns, treat patients with more compassion, and have better resources and skills to understand and effectively address their clients’ needs avoiding punitive mechanisms. Further evaluation of NIATx impact on providers and their patient care is needed, with further suggestions for interventions.

Second, to address patients’ wounded identity and their wish to pursue “normal life,” interventions may need to include strategies that focus on contributing to society, such as training patients as counselors or peers to give them potential employment or volunteer opportunities, assisting patients to become spokespersons, and creating recovery-oriented systems of care (ones that do not demonize MMT but integrate it into the recovery concept). The creation of a community of practice, where providers interact and share ways in which care is provided, can help to collectively address challenges using the best practice models from international experience and to enhance patient centeredness.

Third, our findings indicated that patients were concerned with the providers’ monopoly to choose their patients, whereas patients were unable to choose which MMT provider to go to (as there was only one in their region). Transferring the experience of independent MMT provider agencies such as APT Foundation in Connecticut outside the United States may help to establish a more open and competitive market of OAT services and offer clients choices accommodating their needs and protecting their identity from denigrating labels such as “subhumans.”

Fourth, although our findings suggested that, in 2013, patients treated with methadone believed the police was a strong punitive “stick” that MMT providers used to control them, the police system in Ukraine underwent significant reforms in the recent year. This may offer opportunities to educate and involve the police in addiction treatment as part of their mandate of protecting communities and vulnerable key populations. This may shift the image of the police from the punitive structure to one that is more oriented toward community building, public health goals, and social recovery.

Finally, our findings suggest we do not know enough what “normalcy” and “recovery” means for patients and providers in their environment. The folk concept of a “normal life” drives patients’ voluntary discontinuation of MMT, and researchers must urgently consider how OUD patients’ and MMT providers’ treatment goals align with each other and with these understandings of “normal life.”

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 work was supported by the National Institute on Drug Abuse (grant number R01DA033679).

Author Biographies

Julia Rozanova, PhD, is a medical sociologist and a research faculty member in the Yale University AIDS Program. She earned her doctorate at the University of Alberta and taught in the School of Medicine at the University of British Columbia, and at the Yale School of Public Health. Her work focuses on cultural and structural determinants of aging health inequalities across societies.

Ruthanne Marcus, PhD, MPH is the associate director for Clinical and Community Research at the Yale University AIDS Program. She holds a Master of Public Health degree from Johns Hopkins Bloomberg School of Public Health and a doctoral degree in Medical Anthropology from the University of Connecticut. She has over 25 years of experience conducting both quantitative and qualitative research on substance abuse, HIV, injection drug-using practices, sexual behavior, and mental health.

Faye S. Taxman, PhD, is a University professor in the Criminology, Law and Society Department and Director of the Center for Advancing Correctional Excellence at George Mason University. She is recognized for her work in the development of the seamless systems of care models that link the criminal justice with other service delivery systems as well as reengineering probation and parole supervision services, and organizational change models. Her work covers the breadth of the correctional system from jails and prisons to community corrections and adult and juvenile offenders, including all types of interventions and system improvement factors.

Martha J. Bojko, PhD is an applied medical anthropologist whose research focuses on the intersection of gender, sexual health, substance abuse, mental health and HIV/STI prevention and intervention. She received her PhD in Anthropology from the University of Connecticut and completed postdoctoral training in addiction medicine, health services research and implementation science in the Department of Internal Medicine, AIDS Program at Yale University School of Medicine. Dr. Bojko was based in Ukraine as a NIH/Fogarty Global Health Fellow and continues to collaborate with governmental agencies, universities, clinical sites, local and international NGOs and community-based organizations in Ukraine around healthcare reform and in designing and adapting culturally appropriate mental health/psychosocial services and HIV prevention and intervention strategies.

Lynn Madden, PhD, MPA, is President and Chief Executive Officer of the APT Foundation in New Haven, CT. Her professional interests are focused on identifying treatment gaps in substance abuse/mental health treatment and improving both access to those services and retention in treatment as well as understanding the relationships between improved access and treatment outcomes and the relationships between improved access/retention and cost per episode of treatment. Dr. Madden is a well-known consultant and NIATX Coach working throughout the United States since 2004 and in Ukraine since 2013.

Scott O. Farnum, is Department Head of Pharmacological Therapies at the Hill Health Center in New Haven, CT with over 25 years of clinical and management experience in a variety of settings in the mental health and addiction field, particularly concerning opioid dependency. He also serves as a process improvement coach for the Network for the Improvement of Addiction Treatment (NIATx) funded by the Robert Wood Johnson Foundation and the Center for Substance Abuse Treatment (CSAT). Mr. Farnum received his Master’s degree in Counseling from Indiana University and his Master’s degree in Public Administration at the University of Maine.

Alyona Mazhnaya, is a PhD student in the Bloomberg School of Public Health at Johns Hopkins University. Previously she was Research Manager at Alliance for Public Health, Kyiv, Ukraine in charge of big-scale collaborative research projects focused on scaling-up the treatment of opioid use disorders in Ukraine. She received her M.S. degree at the State University of New York at Albany, and her current research focuses on addiction, poly-substance use including alcohol, and recovery in Ukraine.

Sergii Dvoriak, currently serves as the Senior Researcher of the Ukrainian Institute on Public Health Policy (UIPHP) that he established after completing post-graduate training in Addiction Medicine and HIV-prevention at Johns Hopkins University as a Humphrey Fellow. He has over 40 years of experience with Addiction Medicine and Psychiatry and has been working in HIV/AIDS since 2000. He started the first opioid agonist treatment program for opioid addicts in Ukraine and is a senior co-investigator on several large-scale research projects funded by the National Institute on Drug Abuse.

Frederick L. Altice, is professor of Medicine, Epidemiology and Public Health at Yale University and Director of Clinical and Community Research. His research has focused on the interface between infectious diseases and substance use disorders and has focused on biomedical and behavioral prevention and treatment, health services research and intervention development, testing and implementation science. His interests in implementation science have involved expanding evidence-based interventions and practices in multiple settings including in the United States, Malaysia, Ukraine, Indonesia, Ukraine, Kyrgyzstan, Moldova, Peru and South Africa. His research has focused on several key populations including people who inject drugs, men who have sex with men, prisoners, sex workers, and homeless populations.

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