Treating Risk, Risking Treatment: Experiences of Iatrogenesis in the HIV/AIDS and Opioid Epidemics

Abstract

This paper explores how poor health outcomes in the HIV/AIDS and opioid epidemics in the United States are undergirded by iatrogenesis. Data are drawn from two projects in Southern California: one among men who have sex with men (MSM) engaging with pre-exposure prophylaxis to HIV (PrEP) and the other in a public hospital system encountering patients with chronic pain and opioid use disorder (OUD). Ethnographic evidence demonstrates how efforts to minimize risk via PrEP and opioid prescription regulation paradoxically generate new forms of risk. Biomedical risk management paradigms engaged across our two ethnographic field sites hinge on the production and governance of deserving patienthood, which is defined by providers and experienced by patients through moral judgments about risk underlying both increased surveillance and abandonment. We argue that the logic of deservingness disconnects clinical evaluations of risk from patients’ lived, intersectional experiences of race, class, gender, and sexuality. Our analysis thus re-locates patients in the context of broader historical and sociopolitical trajectories to highlight how notions of clinical risk designed to protect patients can in fact imperil them. Misalignment between official, clinical constructions of risk and the embodied experience of risk borne by patients produces iatrogenesis.

Introduction

This paper is an experiment in using ethnographic data from the HIV/AIDS and opioid epidemics to query how biomedical definitions of risk and the implementation of risk-preventive technologies work together to generate new forms of harm. Although the HIV/AIDS and opioid epidemics in the United States chart distinct histories following complex sociopolitical trajectories, public health interventions aimed at averting HIV acquisition and opioid-related harms are premised on the shared principle of risk reduction. Despite considerable investment in risk management and its attendant logics, calculations, and interventions, however, neither epidemic subsides. New HIV diagnoses and opioid overdoses have remained relatively stable in the last decade, while illicit opioid use is on the rise (CDC 2019; DEA 2019; NIDA 2019).

In this article, we explore how physicians treat and patients experience risk in relationship to HIV/AIDS and opioids. First, we describe philosopher Ivan Illich’s conceptualization of iatrogenesis and establish a theoretical framework for interpreting how the biomedical production and governance of risk generate iatrogenic harms. Then, we contextualize both epidemics in relation to risk, highlighting how structural racism inequitably distributes both risk preventive technologies and risk itself. Through the interpretation of ethnographic vignettes, we explore how moral judgements around the concept of deserving patienthood shape clinical definitions of risk and naturalize iatrogenic harms. Placing Illich’s conceptualization of iatrogenesis into conversation with theories of risk, we therefore show how discourses and technologies of risk prevention can paradoxically imperil those they are ostensibly designed to protect.

Clinical iatrogenesis refers to negative outcomes produced through the provision of health care, yet Illich extends this concept beyond the clinic to describe social iatrogenesis, referring to shifts in social structure and behavior that occur through the application of medical technology to people who are ‘supposedly sick or who might become sick’ (Illich 1975, 79). As a consequence, individuals lose autonomy to define and manage their own wellbeing. This insight is particularly germane to understanding biomedical efforts to prevent HIV acquisition and opioid-related harms like infection, dependence, and overdose. In this paper, we propose risk as a key technology underlying clinical and social iatrogenesis.

Building on Foucault’s insight into how individuals are impelled to govern themselves through the internalization of normative discourses (Rabinow and Rose 2006), social scientists have analyzed risk as a form of knowledge that is historically, socially, and culturally produced (Douglas 2003; Caplan 2000). Scholars have explored the ways that risk ‘discourses and practices … construct related subjectivity and experience’ (Rhodes 2009, 198). Medical anthropologists have demonstrated how individual perceptions of risk are structured by political contexts, technological developments, and quotidian experiences (Panter-Brick 2014). Aronowitz (2015) applies these ideas to describe how epidemiological measures of population health constructed the risk factor as an object of intervention, producing new markets for risk evaluation and management in medicine and public health. As a result, a moral discourse of individual responsibility over health, centered around the avoidance or minimization of risks, has become hegemonic in U.S. health care. As Bourgois (2000) and Garcia (2010) have shown, access to biomedical treatment is increasingly contingent on alignment with neoliberal ideologies of individualism and self-responsibility. According to this ethos, individuals are made responsible for managing their own risks yet reliant on experts to define what constitutes a threat (Hanhardt 2013), reinscribing the hegemony of medical and scientific authorities. By exploring the tensions that arise when individuals confront risks defined by experts, our data demonstrate that risk discourses and risk-preventive technologies are fraught with moral ambiguity that constrains their efficacy in situ.

In the past decade, powerful new tools of risk mitigation have emerged in the HIV/AIDS and opioid epidemics. The antiretroviral drug Truvada was approved for use as PrEP in 2012. Taken daily, PrEP reduces the risk of HIV acquisition by up to 99%, whether or not PrEP users wear condoms. PrEP has been foregrounded as a core component of efforts to end the HIV epidemic (HIV.gov 2019), yet attempts to scale up access have floundered, as only ~7% of individuals at ‘high risk’ for HIV acquisition are being prescribed PrEP (Huang et al. 2018). Why the epidemiological identification of patients as ‘high risk’ does not translate directly into the provision of preventative care is a quandary we explore ethnographically in this article.

In the case of opioids, risk-reduction interventions including prescription drug monitoring programs, clinical guidelines intended to mitigate the risk of overdose, and the use of buprenorphine in medication-assisted treatment (MAT) have been introduced to curb the ongoing epidemic. These measures, ostensibly designed to diminish risks associated with opioid use, have led to increased scrutiny on physicians prescribing and patients consuming controlled substances (Beletsky 2018, see also Chary and Flood, this issue). Following opioid prescription reduction, a result of these measures, many patients lost access to opioid pain medications and transitioned to illicit opioid use, profoundly jeopardizing their health (Mars et al. 2014). In both the HIV/AIDS and opioid epidemics, the identification of risk may not lead to improved health outcomes. Indeed, the ascription of risk to patients can paradoxically diminish the likelihood that they will receive care that protects them from harm. In fact, as we explore below, the identification of risk can lead both to increased surveillance and abandonment by providers and systems of care.

Further, we will show how the identification and mitigation of risk is deeply inflected by structural racism. Although race is often identified as a risk factor in biomedical discourses, antiracist scholarship demonstrates that racism, not race, accounts for well-documented disparities in health outcomes (Gravlee 2009; Ford and Airhihenbuwa 2010). Our analysis examines race as a relation of domination that has long played a role in which bodies are deemed risky, dirty, diseased, and pathological (W. Anderson 2006). Recent work has demonstrated, for example, how supposedly sophisticated algorithms used to allocate care exacerbate racist health care inequities (Obermeyer et al. 2019) and reify race (Benjamin 2019). Paradoxically, it is often those racialized, ‘risky’ individuals that are least likely to receive care.

The AIDS crisis intensified stigmatization of MSM through homophobic, racialized tropes of degeneracy. While biomedicine has historically pathologized same-sex sexuality (Spurlin 2019), MSM of color, and Black men in particular, are further pathologized through racist stereotypes of promiscuity (Bailey 2016). Research demonstrates there is no statistically significant difference in ‘risk behavior’ across race/ethnicity (Millett et al. 2007). Nonetheless, these pernicious associations shape racialized inequities in PrEP access. The burden of the HIV/AIDS epidemic is becoming ever more concentrated among MSM of color, while nearly 70% of PrEP prescriptions are filled by white MSM (Kuehn 2018). This disparity points to an under-interrogated relationship between the distribution of PrEP and the distribution of risk.

The distribution of risk in the opioid crisis has likewise been refracted through racism. Lopsided opioid prescribing produced by racist (under)treatment of pain and racialized class disparities in health care access produced a colloquially ‘white opioid crisis’ (Hansen and Netherland 2016). The deregulation of pharmaceutical development working in tandem with patient advocacy against undertreated pain (partly funded by pharmaceutical companies), generated massively expanded markets for new pain medications in the U.S. beginning in the 1990s (Wailoo 2014). Advocacy and marketing efforts effected a cultural shift in biomedicine. Pain was named the ‘fifth vital sign’ and insurance coverage for prescription opioids increased while access to more time-intensive treatments for pain was curtailed (Levy, Sturgess, and Mills 2018). The effects of market expansion were felt unevenly: white patients of lower socioeconomic status, more likely than patients of color to have health care access and clinically recognized chronic pain (K. O. Anderson, Green, and Payne 2009), and more likely than higher income patients to face occupational injuries (Poleshuck and Green 2008), were exposed to high levels of relatively cheap prescription opioids. This exposure has correlated to opioid overdoses which have been geographically concentrated in lower income, predominantly white communities (Haffajee et al. 2019). Recently, opioid prescriptions have fallen precipitously, but undertreated pain persists, and overdoses are rapidly increasing for poor patients of color (SAMHSA 2020). Further, while the harms of the opioid epidemic have affected individuals of all races/ethnicities, the risks of drug criminalization continue to be concentrated onto communities of color (Mendoza, Rivera, and Hansen 2019). In these ways, the HIV/AIDS and opioid epidemics have both been shaped by structural racism. Racialized people, deemed risky, are excluded from access to care, producing an uneven distribution of risk and harm.

Risk reduction discourses across the HIV/AIDS and opioid epidemics construct patients as ‘good’ or ‘bad’ and therefore deserving or undeserving, moral ascriptions premised on race, class, gender, and sexuality (Willen 2012). Determinations of deserving patienthood are both shaped by broader power structures and negotiated during the clinical encounter. Health care providers are not neutral intermediaries in this process: they actively take up and apply these moralizing logics. The clinical interaction, as a putative point of care, represents a dense transfer point of power in the entanglement between individuals and ‘institutions of normative coercion’ (Turner 1992). Our ethnographic data therefore focus on clinical spaces as key sites where the meanings and consequences of risk manifest. Regimes of risk shape clinical decision-making and outcomes. Furthermore, the language of risk functions as the covert vehicle for racialized triaging of care away from patients deemed undeserving, shoring up the authority of providers while concealing their moral judgments.

Our ethnographic data show how iatrogenic harms proliferate when the logics behind risk discourses and technologies of risk mitigation are misaligned with the needs and experiences of patients. When MSM are exhorted to wear condoms in order to deserve PrEP, their own priorities about sexual pleasure are silenced and the real-world effectiveness of HIV risk prevention strategies is diminished. When opioid users are shunted into the diagnosis of addiction, concerns about pain management are likewise sidelined and the potential to minimize opioid related harms is constrained. In both cases, attempts to mitigate risk counterintuitively generate new forms of risk in a process we identify as iatrogenesis.

Methods

Both Lauren and Will engaged their dual positionality as medical students and graduate students in anthropology to conduct fieldwork in clinical spaces examining risk management and its consequences for patients and providers. IRB approval was obtained for both projects through UCLA. Will’s data draw from a year of fieldwork on PrEP access and adherence in Los Angeles, probing the relationship between sexual subjectivity and risk among MSM. Semi-structured interviews and participant observation were carried out, involving both PrEP patients (n=15) and providers (n=5). Recording his own experiences as a PrEP patient since 2015, Will enhanced this research through autoethnography. Anthropologists of sexuality (Newton 1993; Wekker 2006) have shown how ethnographic studies of non-normative sexual cultures are profoundly inflected by the researcher’s own sexual subjectivity. Autoethnography, therefore, has been theorized as a queer method (Jones and Adams 2010; McGlotten 2017), effective in destabilizing traditional boundaries between researcher and participant and subverting a hierarchical politics of knowledge emanating from that distinction.

Lauren’s opioid data draw on 18 months of ethnographic fieldwork from 2017-18 in a Southern California public hospital system treating low-income patients from diverse racial/ethnic backgrounds. Fieldwork included person-centered ethnography (Hollan 2001) with patients followed through health care visits and at home. Semi-structured interviews elicited patient (n=15) and physician (n=12) logics surrounding opioid prescribing and experiences of opioid-related risks. The authors pooled data from their respective research projects, and collaboratively selected ethnographic vignettes to foreground the themes related to risk and iatrogenesis which crosscut our research projects.

Results

PrEP Data

During a research talk on PrEP, a physician in attendance shared his concern about PrEP-seeking patients abandoning condoms. Taking on the voice of a hypothetical patient, the physician described the following scenario: ‘I go to my doctor, and I say, “I’m a weird person and I have bad sexual behaviors,” and the doctor says, “You should become a better citizen.” And I say, “I have no desire to be a better citizen, I just want to get treated for STDs. I heard you can give me short course antibiotics.”’

– Will, February 2019

The anxiety motivating this physician’s comment is encapsulated by what has been termed the risk compensation debate (Blumenthal and Haubrich 2014). In the context of PrEP use, risk compensation refers to the notion that those who believe themselves to be at diminished risk of HIV acquisition may, in turn, adopt riskier sexual practices. In other words, MSM taking PrEP may engage in more condomless anal sex, which would theoretically increase the likelihood that they might acquire non-HIV, sexually transmitted infections (STIs). The relationship between rising rates of bacterial STIs and PrEP implementation among MSM remains controversial in public health discourse (Grant and Koester 2016; Carlo Hojilla et al. 2016). The position that stakeholders—researchers, policy makers, and providers like the clinician in this vignette—take in this debate signals the usually implicit moral values they hold on patient responsibility and autonomy.

In his gloss on how patients manage risk, the clinician in our vignette reifies the connection between condom use and moral sexual citizenship. He expresses frustration at individuals who, in his eyes, fail to understand and respond to biomedically constructed risk appropriately. He stigmatizes those at risk for acquiring HIV as ‘weird’—dangers to themselves, to moral standards of normative sexuality, and vis-a-vis their poor citizenship to the public more generally. In this hypothetical scenario, the provider situates himself as an authority with the responsibility to manage the very risk he himself has constructed. The implied fix here would be to withhold PrEP from patients who will not use condoms with perfect consistency.

Providers who subscribe to this logic produce both social and clinical iatrogenesis by refusing to treat certain patients. When barred from PrEP access, ‘risky’ patients are denied autonomy to define and manage their own sexual health and are physically imperiled via elevated risk of HIV acquisition. In Will’s own experience renewing his prescription for PrEP, detailed below, he confronts this risk management paradigm and intuits that his continued access to PrEP depends on how medical gatekeepers perceive his sexual risk practises.

‘Have you talked with your provider before about setting a goal for condom use?’ The nurse smiles encouragingly in my direction and I recognize the trappings of motivational interviewing from medical school training. At the moment, my main motivation is to say whatever is necessary to get out of the room, down to the lab for my blood draw, and out the door to class. The answer is no. Well, not exactly. Less about the crude calculus of condoms, taking PrEP is more about my relationship to sex that may or may not involve a barrier method. ‘Um, I’m a medical student, so…’ I stammer, feeling uneasy at the idea of driving my education as a wedge between myself and the presumed degeneracy marking gay men in the biomedical imaginary. ‘So, you sound pretty good. Would you say 80%?’ I nod. She smiles. ‘I’ll put in three refills.’ She hands me a paper bag, bleached clinically white, and tells me it is filled with ‘goodies.’ I open it at home and find a rainbow assortment of condoms, lube in condiment-sized packages, and a purple plastic beaded necklace. Did I convince her? Does she think I am a goodie? At least 80% of one?

– Will, October 2017

In the clinical encounter described above, Will confronts his interpellation as a subject of risk. From a structural standpoint, he is well-positioned to access PrEP. He is white and privately insured in a health care setting where race and insurance status create barriers to treatment and care (Smedley, Stith, and Nelson 2003). As a physician-in-training, he possesses further advantages that smooth his access to PrEP. He self-consciously invokes his cultural health capital (Shim 2010) and the racialized respectability politics adhering to it to reassure his provider that he is well-versed in the norms governing sexual health.

But at the critical moment when he is probed about his condom use, it becomes clear that these factors alone are insufficient to produce him as the proper subject of risk. His ongoing access to PrEP is contingent on performing the role of prudent sexual actor who practises consistent condom use, thereby proving himself to be a deserving patient. This is despite the fact that PrEP’s protective benefit against HIV obtains independently of condoms. When the nurse supplies a rate of 80% condom use and correlates that with being ‘good,’ Will assents in order to retain access.

To what extent does this outcome hinge on a ‘white lie’? Calabrese et al. (2014) have shown that providers perceive Black patients as more likely to engage in condomless sex; their judgments correlated with decreased willingness to prescribe PrEP. In contrast to the prescribing reticence produced through racist stereotypes, the nurse’s unquestioning acceptance of Will’s nod was likely mediated by his cultural health capital, of which whiteness is constitutive. Will registers how bodily practises of risk mitigation are bound up with moral judgments, raising the question of how the historically-sedimented purity test of idealized condom use complicates engagement with PrEP for ‘high-risk MSM,’ especially for MSM of color.

The behavioral interventions premised on condom promotion that aided in dramatically decreasing rates of HIV acquisition through the 1990s solidified condom use as a principal marker of moral sexual citizenship (Cristian Rangel and Adam 2014). Condom use became a litmus test to distinguish between normative subjects demonstrating responsibility through the sanctioned response to HIV risk and pathological subjects who were seen as risks to be managed. This boundary work dividing MSM means that ‘those deemed sexually irresponsible through their lack of condom usage have come to be labeled as sexually deviant and marked as “social problems villains”’ (Pawson and Grov 2018). Although PrEP provides superior protection against HIV acquisition, condom use remains entrenched as a standard against which the respectability and worthiness of MSM is measured.

While Will retained his PrEP prescription by conforming to normative expectations, the moral test he was given points to the radiative emotional implications of social iatrogenesis. When MSM seek PrEP, they assent to intensified forms of surveillance and moralized behavioral intervention vis-à-vis condoms (Dean 2015). Fear of abandonment from care forecloses space for them to articulate in the clinical encounter how pleasure and condoms actually fit into strategies of risk management (Mabire et al. 2019). Sticky risk paradigms constrain a clinically efficacious technology from achieving its potential effectiveness on the ground (Kippax 2012). Moreover, pleasure is denied legitimacy as a factor in decision making around sexual health.

Rick ¹is a 58-year-old gay man who lived a fast life during the height of the HIV epidemic in Los Angeles. His first live-in boyfriend tested positive while they were dating, and he subsequently lost many friends and acquaintances due to complications of AIDS. Rick minimized his risk of acquiring HIV through condom use and periods of monogamy. Rick started taking PrEP after his husband of ten years got a prescription. They had decided to open their relationship to outside sexual partners. Soon after starting PrEP, Rick experienced a ‘metallic sensation, a dry metal feeling’ in his mouth. He never refilled his prescription. Rick says he knew physical side effects were a possibility, but he did not interpret his reaction as strictly pharmacological. Together, we discussed how Rick’s experiences during the HIV epidemic ingrained a way of getting by in crisis that inscribed a physical and psychological relationship—an internalized disgust—to condomless sex outside a monogamous relationship. Confronted with it, he felt sick.

– Will, February 2020

Coming out in Los Angeles during the mid-1980s, Rick’s sexual subjectivity (Dimen 2016) was crafted in the shadow of the first and most fatal years of the HIV/AIDS epidemic. His formative experiences with lovers and loved ones who seroconverted, including some who would later go on to develop AIDS and die, inculcated in him a mortal fear. He organized his sexual behavior around that fear. Rick was convinced that having condomless sex outside of his marriage would make him sick. Intellectually, he understood that PrEP was even more effective than condoms at preventing HIV, and that by taking PrEP, he could have condomless sex with minimal concern of HIV acquisition. But rather than jumping headlong into condomless sex, as the physician quoted previously imagined, Rick’s embodied reaction to this altered risk landscape was to feel physically ill. Unable to articulate whether this was psychosomatic, a medication side effect, or an emotional reaction to past trauma, he eschewed PrEP nonetheless.

Using PrEP viscerally reminded Rick of his experience sheltering from the rampant spread of HIV in the 1990s, making him ‘worried sick,’ a condition rendered illegible within biomedical risk management paradigms. Rick’s experience highlights the importance of an embodied understanding of risk mitigation technologies in the longer arc of the AIDS crisis. His ill feelings, an iatrogenic collision between dehistoricized medical technology and the lived experience of HIV/AIDS, challenge PrEP’s efficacy as a one-size-fits-all solution to the HIV/AIDS epidemic.

Lauren’s opioid vignettes, similar to Will’s PrEP data, reveal how attempts to limit risk can cause iatrogenic harm. In the case of opioids, as for PrEP, moralizing technologies of risk governance determine how patients are viewed by physicians and how physicians see themselves and maintain their authority.

Opioid Data

Susan, a 63-year-old white woman, fractured her pelvis in a work-related accident ten years ago. Her physician, Dr. Thomas, had prescribed an opioid pill for her chronic pain, according to the standard of care at the time. Her pain was managed effectively; her pain medication dose went unchanged for years. She felt well cared for by her physician and expressed no desire to have her dosage raised. In fact, she often described her fear of increasing tolerance. Six months ago, however, Dr. Thomas told Susan that he was temporarily unable to prescribe opioids, due to an audit of his practise that increased scrutiny on his prescribing. Susan searched for another physician who could provide her with the same dose of pain medication. One after another, three physicians Susan sought out refused to treat her, citing increased insurance barriers and new CDC guidelines highlighting the risk of opioid use for chronic pain.

Despite her best efforts, Susan lost access to opioids and developed painful withdrawal. She then bought illicit opioid pills from a dealer, who she later asked to inject morphine, then cheaper heroin, into her thighs. This injection drug use resulted in massive infections leading to her near death from sepsis. After a month-long hospital stay, Susan visited Dr. Thomas once again, hoping to re-establish care.

“I can’t see you anymore,” Dr. Thomas said firmly upon entering the room. Susan started to speak but he stopped her. “I found out you’ve been using things illegally,” he said, waving a piece of paper in front of us that Susan and I could not see.

As we drove back to the skilled nursing facility where she was recovering, Susan cried softly in the car. “He didn’t give me a chance to explain myself, so that hurt my feelings,” Susan said, looking out the window. “It’s a defeated feeling. I just want somewhat of a normal life.”

– Lauren, February 2018

After her accident, Susan was interpellated as an ideal candidate for opioid medications. Deregulated profiteering by pharmaceutical companies sold newer opioids as a non-addictive analgesic marketed particularly to white women with chronic pain (Wailoo 2014). Susan’s public insurance further privileged opioids in the efficiency-oriented market time of health care structured to minimize the length of clinical visits while maximizing billable treatments (Satterwhite et al. 2019). Susan’s gender, class, and racial positioning therefore helped her secure access to prescription opioids, on which she became dependent for daily functioning and a ‘normal life.’ Her reliance on the medical system for pain relief can be interpreted as a form of social iatrogenesis described by Illich, whereby individuals become increasingly dependent on medical interventions for their well-being. Treatment with opioids enabled Susan to go about the daily routines of her life undisrupted by pain, at a dose satisfactory both to her and her physician.

After opioid overdoses rose exponentially in the early 2000s, particularly concentrated among white patients prescribed opioids at high rates, prescribing patterns came under intensified scrutiny, which reshaped Susan’s trajectory. In 2016, the CDC released new guidelines focused on assessing and mitigating the risks of opioid prescriptions (Dowell, Haegerich, and Chou 2016). Researchers described a correlation between prescribed opioid dose and overdose risk, stating that patients prescribed more than 50 milliequivalents of morphine daily were at increased risk of overdose and death. These guidelines—coinciding with increased prescription oversight, audits by the Drug Enforcement Agency, and reduction in insurance coverage for opioids prescribed for chronic pain—correlated with an abrupt and accelerating decline in rates of opioid prescribing (Bohnert, Guy, and Losby 2018). Based upon these risk reduction interventions, Susan was transformed into a ‘high-risk’ prescription opioid user, despite the fact that she had been treated stably on an unchanging opioid dose for years.

Once identified as ‘high-risk,’ Susan was abandoned by multiple physicians, made culpable for this abandonment, and subsequently left to manage her chronic pain and opioid dependence absent medical involvement. Susan blamed herself for her abandonment from care and expressed shame for resorting to illicit opioids to manage her pain. Her abandonment represents another iatrogenic effect, leading to ever-worsening harms, including infection, risk of arrest, and recategorization as an ‘illegal drug user.’

These harms were structurally shaped by criminalization, her race and class position, and the illicit opioid supply landscape in the U.S. While her whiteness insulated her from the most pernicious effects of criminalization in the racially and geographically segregated War on Drugs, nonetheless, changing risk paradigms meant that poor patients, even white women like Susan, fell out of the protections that came with the medicalization of opioid dependence (Hansen 2017). Intensified efforts to reduce illicit opioid supplies have made diverted pills less accessible (Dasgupta, Beletsky, and Ciccarone 2017), a dynamic that fueled Susan’s transition to cheap and readily available heroin. Although epidemiological studies have identified high opioid prescription rates as a risk factor for heroin use and overdose (Muhuri, Grfroerer, and Davies 2013; Kolodny et al. 2015), ethnographic data show that Susan’s transition to heroin and the harms she experienced as a consequence directly resulted from medical abandonment. Policy interventions implemented to reduce opioid prescribing shore up the legitimacy of biomedicine in managing risks to patients, while neglecting to consider the risks of medical abandonment and its iatrogenic consequences.

Due to increasing oversight of his medical practise, Dr. Thomas discharged many of his patients who were on high doses of prescription opioids and were either unwilling or unable to taper down. He felt as though he was now under constant surveillance, frustrated that his attempts to help patients with their pain threatened his medical license. Because drug rehabilitation is prohibitively expensive for most of his publicly insured patients, his options to refer out for opioid tapering were severely limited. He remarked that surveillance has gone ‘overboard,’ because the physicians and patients who were ‘doing bad things aren’t around anymore.’

– Lauren, February 2018

Dr. Thomas experiences opioid prescribing as a risk to himself and his livelihood. In response, he situates himself as morally opposed to patients and physicians who have done ‘bad things.’ He sees constraints on his practise as state bureaucratic overreach that is no longer necessary, because moral transgressors have been purged. Whether these patients and physicians have been purged from the health care system or from society generally—through overdose, incarceration, or death—is unclear; where they have gone now that they ‘aren’t around’ is left unanswered in his formulation. Such a statement evokes a moral discourse common in depictions of drug crisis, which advocates for containing and quarantining off the deviant individuals deemed threatening to ‘innocent’ society (Carr 2019; Lassiter 2015).

State surveillance thus places moral subjectivity at stake not only for patients, but also physicians. Dr. Thomas participates in boundary making work to maintain his jurisdiction and that of other physicians in determining who is a deserving patient and how they should be treated. Although he expresses regret, he nonetheless discharges a number of patients who he fears might risk his practise. His abandonment of patients contributes to iatrogenic harms that are rendered invisible, but which shore up his own moral authority and protect his prescribing privileges. Discharging patients from care is an act of self-preservation disguised as moral righteousness based on risk calculations ostensibly designed to protect patients.

Susan had been vomiting bile all morning, anxious about her upcoming clinic visit. She took a long bath and dressed up, eager to look her best. She wanted a prescription for outpatient methadone to treat her chronic pain while avoiding daily visits to the methadone clinic.

‘I just want to feel safe and have my pain under control to the point where I can have my life back,’ Susan beseeched the doctor. ‘That’s a fair request,’ he responded, then explained that he was ‘not comfortable’ prescribing her outpatient methadone given her history of addiction. He offered her sublingual buprenorphine instead, describing the partial opioid agonist as a safe and effective medication for opioid addiction, while conceding that it may not treat her pain well. “You’re really here for addiction,” he asserted.

He explained the routine practise for initiating buprenorphine at home. She would have to stop all opioids: buprenorphine blocks their effects and can precipitate severe withdrawal when taken too early. The next day, she could safely place the medication under her tongue. Once home, Susan went into severe opioid withdrawal marked by shooting leg pains, diarrhea, and insomnia. Although she knew that taking buprenorphine could alleviate her symptoms, she grew increasingly anxious, too afraid that its blockade of other opioids would make her vulnerable to untreatable future pain. The only thing worse than resorting to illicit opioids was the specter of unmanageable pain while taking buprenorphine. She couldn’t bear to risk it. Instead, she bought methadone off the street.

– Lauren, March 2018

Susan endeavors to articulate her goals of care, present herself well, and perform the required moral subjectivity when requesting prescription methadone. Regardless, Susan fails to achieve the role of deserving pain patient. Her new physician prioritizes managing the risks of addiction instead. Although Susan perceives methadone prescribed in an outpatient clinic to be the treatment that will make her feel ‘safe,’ her doctor deems this too risky given her history of addiction. Rather than ‘safe,’ Susan experiences buprenorphine as a gamble: risking potential pain that cannot be alleviated with medical intervention. In her calculus, she decides not to take the prescribed treatment, opting instead to manage her pain with street opioids.

Susan’s interpellation as an addiction patient made only certain treatment options available. Her case demonstrates that discourses and policies of pain management implicitly construct the stigmatised category of ‘addict’, framing ‘good’ pain patients in opposition to ‘street addicts’ (Bell and Salmon 2009). This framework delegitimizes the pain experienced by people labelled ‘addicts.’ Once the physician labels Susan as ‘here for addiction,’ the sticky addict label adheres, despite the iatrogenic causes of her opioid dependence rooted in medically unmanaged pain.

Susan’s concerns about untreatable pain echo ongoing debates regarding buprenorphine’s efficacy for chronic pain and recognized challenges of managing acute pain in buprenorphine patients (T. A. Anderson et al. 2017). Just as the addiction category erases histories of pain, the framing of buprenorphine as a ‘magic bullet’ technological solution to opioid dependence renders invisible why many patients seek out opioids in the first place: the alleviation of pain.

Susan’s anxiety, severe withdrawal, and inability to take buprenorphine point to the embodied risks produced by biomedicine when care is designed to reduce biomedical liability for overdose without considering patients’ needs. Through Susan’s experience, the risks of preserving life that is painful and politically marginalized come to the fore. Risk minimizing technologies such as buprenorphine have effects beyond their intended targets, and the embodied experiences of such risk technologies may constrain their effectiveness.

Conclusion

Clinical entanglements premised on risk in the HIV/AIDS and opioid epidemics proceed through a double-bind logic. The patients in our vignettes were made dependent on specific treatments—PrEP and opioids—for their wellbeing, yet constructed as autonomous agents tasked with demonstrating moral self-responsibility to access these treatments. Producing demand for and then restricting supply to risk-preventive technologies is iatrogenesis. Our ethnographic data reveal how individuals sought recognition as deserving patients when attempting to access care. Clinicians, caught between the pleas of patients in front of them and the risk paradigms they believed they were duty-bound to uphold, often restricted prescriptions in response. Patients were abandoned by medical systems supposedly in place to protect them. Even when clinicians prescribed PrEP and buprenorphine, these medications evoked feelings of peril in patients, limiting their effectiveness.

By endorsing consistent condom use, solidifying his position as a prudent sexual actor and deserving patient, Will secured continued access to PrEP. But in so doing, the space to define what sexual health means to him personally was foreclosed. In the opioid case, shifting risk paradigms made Susan dependent on formal health care structures for survival, until she was discharged from care, restricting her capacity to control her pain and jeopardizing her life. Will quickly discerned the performance required to secure PrEP, aided by his racial and class positioning. Susan, on the other hand, facing overwhelming opioid prescription backlash, lost access to the category of deserving patienthood despite efforts to gain recognition with what cultural health capital she possessed.

Clinicians, alongside patients, actively interpreted themselves vis-à-vis risk. They demonstrated acts of self-preservation disguised by the rhetoric of morally righteous clinical judgment. The physician treating MSM feared that provision of PrEP might endorse ‘bad behavior’ and produce ‘bad citizens,’ which he used as a justification for curtailing access to PrEP. In the opioid setting, Dr. Thomas reproduced moral judgments implicit in technologies of surveillance, aligning himself against the ‘bad’ doctors and patients ostensibly driving the opioid epidemic.

Biomedical tools for risk management across both epidemics were experienced in ways that challenged their efficacy. While taking PrEP, Rick was haunted by a daily reminder of the spread of HIV. That embodied sense made him feel sick, and he stopped filling his prescription. Susan’s visceral fear of untreatable pain linked to buprenorphine made initiating the medication untenable. Buprenorphine made her feel endangered rather than safe, and she resorted to illicit opioids instead. Both patients exhibited embodied, historically-sedimented forms of suffering that were not easily alleviated, and in fact were exacerbated by, the treatments offered.

Illich writes that medicalization entails institutional overreach that erodes communities’ capacity for wellness (Russell 2019). Our data show that efforts to mitigate the harms associated with PrEP and opioid prescribing obfuscate the iatrogenic consequences of restricting access, labeling patients ‘high-risk,’ and prioritizing normative behavior over patients’ expressed needs. Biomedical policies to manage the risks of providing PrEP or opioids must address the risks of failing to provide these prescriptions, which caused avoidable and unnecessary suffering in our case studies. Pleasure and pain, crucial aspects of patients’ lived experiences with risk, were eclipsed in the clinical encounter by the priority of protecting clinician comfort. When they surfaced, pleasure and pain were absorbed into moral judgments of patient worth and weaponized as justifications for abandonment or surveillance. Clinicians and anthropologists must attend to the ways that risk is embodied in order to prevent the iatrogenic harms resulting from dissonance between official dicta and lived experience.

The risk dynamics naturalized in the HIV/AIDS and opioid epidemics are actively unfolding in the urgent setting of COVID-19. Structures of racial capitalism, which segregate resources and risks in relation to race and class, place people of color at greater risk of exposure to coronavirus. Once sick, these patients face a greater risk of death due to inequitable access to health care and disproportionate (under-treated) comorbidities (Morse and Jones 2020). At the time of writing, policy makers across the U.S. are actively developing frameworks to determine who should receive limited medical resources for COVID-19 treatment. Some proposed frameworks assign a priority score based on likelihood of short and/or long-term survival (ibid.). In action, this logic justifies triaging resources away from those identified as high risk, therefore reinscribing racism and classism and producing compounded inequities. Absent a thorough consideration of how risk is constructed, experienced, and reproduced, these schemes of resource allocation following the logic of risk will inevitably rearticulate iatrogenic harms.

Biographical Notes

Lauren Textor and William “Will” Schlesinger are MD/PhD candidates at the David Geffen School of Medicine and the department of Anthropology at the University of California, Los Angeles.