“A Lot of Times,We Feel Disposable. Do you Understand? Like We Could Just Be Thrown Away.” Characterizing Consumer Perspectives on Substance Use Treatment Gaps

Introduction

The United States (US) remains in the midst of an opioid crisis: prevalence estimates suggest that over 2.7 million individuals have an opioid use disorder (OUD), thousands of lives have been lost to overdose, and nearly 10 million people are estimated to engage in opioid misuse (National Center for Drug Abuse Statistics, 2025). Beyond disproportionately high mortality rates, the crisis has been characterized by an increasing number of individuals experiencing co-occurring mental illness and substance use disorders (Substance Abuse and Mental Health Services Administration, 2020). Individuals with comorbid mental illness and OUD face substantial barriers to care (European Union Drugs Agency, 2023; Livingston, 2020) and a range of adverse outcomes including an increased risk of emergency and psychiatric admissions; likelihood of relapse; suicide attempts; experiences of homelessness; and incarceration (Edwards et al., 2021; Sullivan, 2022; Torrens et al., 2006).

Engagement in evidence-based drug treatment is associated with positive outcomes for individuals with OUD, including reductions in the risk of overdose, illicit substance use, and serious acute care episodes (Lynch et al., 2021; Wakeman et al., 2020). However, treatment programs throughout the US are not standardized, varying substantially in their structure, length, composition, and ideological underpinnings (Rural Health Information Hub, 2023). Some guidelines have called for a combination of medications for opioid use disorder (MOUD), withdrawal management, and psychosocial treatment and support, such as behavioral counseling and case management, as best practices for OUD treatment (Madras et al., 2020), yet there is a lack of consistency in the implementation of programs engaging these components. Furthermore, while federal regulations require MOUD programs to provide counseling and mental health treatment to all patients (McCarty et al., 2018), there are no specific parameters for what evidence-based psychosocial interventions for OUD should consist of (Hoffman et al., 2019; Smyth et al., 2010), leading to significant variability in program quality. Additionally, a range of other barriers limit access to high-quality, comprehensive services. Accordingly, over 70% of people with OUD do not receive any form of substance use disorder treatment (Substance Abuse and Mental Health Services Administration, 2021b), and less than 13% of those with these co-occurring substance use and mental health disorders receive treatment services for both.

As the opioid epidemic continues to devastate individuals and communities throughout the US, it is therefore crucial to critically examine these treatment system gaps and interrogate how programs can better meet the needs of impacted individuals. One avenue through which this has been attempted is through the process of Consumer Participation (CP), in which end-users are “meaningfully involved in decision-making about care and treatment, and the wellbeing of themselves and their community” (Goodhew et al., 2018; King, 2011). Decades of research across mental health and addiction services demonstrate that the involvement of consumers in the design and implementation of health care service delivery is associated with improved outcomes among end users, including increases in service access, patient satisfaction, and treatment goal attainment (Brener et al., 2009; King, 2011). Several systematic reviews have enumerated best practices for CP within the addiction treatment environment, including creating defined processes for engaging people who use drugs in decision-making at all phases, ensuring the voices of end users are elevated, and creating organizational cultures which enable consumers and staff to work together in a mutually respectful, collaborative manner (Goodhew et al., 2018; Selseng et al., 2021; Ti et al., 2012).

Yet while CP is recognized as a meaningful approach to improving treatment experiences and outcomes among people who use drugs, many barriers remain to its successful system-wide adoption. Specifically, people who use drugs continue to face stigmatization and discrimination from health professionals, policy makers, researchers, and other institutional leaders, limiting their ability to engage as equally respected partners (Simon et al., 2021); institutional-level power imbalances create disparities between people who use drugs and researchers/program staff (Ti et al., 2012); and organizations/systems often lack the capacity to actually enact the policies and practices that would be in line with consumers’ recommendations (Goodhew et al., 2018). Despite efforts to engage people who use drugs in processes to improve treatment capacity within the US, these barriers persist, perpetuating treatment gaps, service fragmentation, and suboptimal care.

People who inject drugs (PWID) are a particularly structurally vulnerable population who are disproportionately impacted by the opioid crisis (Larney et al., 2020; Mathers et al., 2013). Yet despite years of research demonstrating the need to adopt treatment practices aligned with the needs of consumers, they often remain excluded from positions with decision-making authority. Accordingly, the goal of this study was to characterize how PWID have experienced the substance use treatment landscape as it compares with their own perceived treatment needs. In doing so, we highlight how existing service gaps contribute to adverse impacts in recovery and treatment outcomes. Such findings can be used to advocate for system reform, emphasizing the harms associated with programs that remain misaligned with the needs of their own users.

Methods

The data included in this analysis came from interviews completed for the Coping And Resilience Experiences (CARE) study, a qualitative study conducted in Baltimore, Maryland with PWID to explore multilevel sources of resilience employed in the face of violence and trauma. Specifically, CARE focused on identifying the individual-level (driven by cognitions or mental processes), interpersonal-level (driven by network-based relationships or one's interactions with others) and community-level (driven by factors stemming from the characteristics of the external environment or community in which one spends time) mechanisms associated with resilience among participants. The interviews were conducted between April 2023 and March 2024. An initial round of interviews was completed with a sample of N = 22 PWID. A database of past/current study participants maintained at a community-based research clinic, which implements harm reduction-based behavioral interventions, was used to generate a list of individuals who had reported recent injection drug use and a willingness to be contacted for future studies. The primary investigator (AW) conducted outreach to those on the list to see if they were interested in participating in a qualitative research study. Individuals who expressed interest were screened via a short online survey to determine eligibility for the CARE study. Eligibility criteria included: (1) self-report injection drug use in the past six months, (2) age 18 or older, (3) self-report having a lifetime traumatic experience (assessed by a question from the Primary Care PTSD-5 screener, an assessment of PTSD symptomology), (4) report currently residing in the Baltimore metropolitan area, and (5) report willingness to participate in an in-person interview.

Those who screened eligible were invited to the community-based clinic to participate in an in-person in-depth interview. Interviews occurred within a private space in the research clinic. AW read an informed consent document out loud and requested verbal consent from all participants before conducting the interview. Participants received $50.00 for their participation. Interviews lasted for a range of 30–70 minutes and were audio recorded with the participants’ permission. Given the iterative nature of the study design, the research team decided to conduct a second wave of interviews to delve deeper into emergent findings and better understand the cognitions, interpersonal relationships, and community-level mechanisms driving participants’ capacity for resilience. All 22 participants were contacted up to three times and invited to return for a second interview, for which they were also compensated $50. The second wave of data collection included interviews with N = 14 participants. The remaining eight members of the original sample were lost to follow up. The Johns Hopkins University Bloomberg School of Public Health Institutional Review Board approved all study procedures.

A semi-structured interview guide was developed for both waves of data collection. Both guides explored mechanisms at the individual, interpersonal, and community levels which fostered resilience in the face of trauma and violence. To examine the ways in which access to external resources could foster resilience (termed community-level resilience mechanisms), the first interview guide probed participants to share their experiences with substance use treatment programs, social services, or other resources in their community. Upon review of the first round of interviews, the research team identified that participants frequently used the terms “bouncing back,” “moving forward,” and “not giving up” to refer to what they as researchers named “resilience.” To better understand the mechanisms driving these processes, the second guide engaged this language, with questions such as:

As I have talked to people about this topic, I have learned some interesting things that I’d like to ask you to talk about. First, many people talk about their ability to “bounce back” from difficult or challenging experiences. Can you tell me about a time or situation where you think you “bounced back?” What helped you “bounce back?” Who helped you bounce back? What resources did you use? What do you tell yourself to help you “bounce back?”

The same series of questions was repeated with the terms “moving forward” and “not giving up.” In addition, the researchers noted that some participants referred to treatment programs in the first series of interviews when discussing community-level support mechanisms, yet many did not mention having experienced treatment as a source of support. In an effort to better understand the ways in which treatment programs and general community-based programming could better serve as sources of resilience or support for PWID, they added questions about what an ideal treatment program would look like to the follow-up guide. These included, “If you could design a treatment program for people who use drugs, what would it look like?” and “What services do you think people who use drugs in Baltimore need most?”

The recordings from both waves of interviews were transcribed verbatim and uploaded into Atlas.Ti, a qualitative data analysis software. Interviews were coded by AW and a research assistant, AJ, who met weekly with the senior investigator (KT) to discuss emergent themes. AW conducted an open coding process immediately upon return of the first three transcripts to generate an initial codebook. Codes were created deductively based upon key concepts included in the interview guide, as well as inductively based upon emergent themes identified in the transcripts. AW and AJ each independently coded the first three transcripts and met to discuss codebook application with KT. Any inconsistencies in coding were reviewed and reconciled. AW and AJ each then coded subsequent transcripts as they were generated, identifying and defining new and emergent codes as needed and meeting to discuss any changes or inconsistencies in codebook application after each transcript. After five subsequent transcripts, the team felt confident that the codebook application was consistent. AJ then coded the remaining transcripts. The study team met weekly to discuss emergent themes and update the codebook as needed to reflect new findings.

During the analysis phase, the study team engaged a thematic analysis process to identify emergent themes which arose throughout the coding process. They noted many consistencies between participants’ accounts of their experiences with the current treatment landscape, their vision of an ideal treatment program, and the impact of the disconnect between these two. Specifically, many participants highlighted persisting gaps in the treatment services they’d accessed which did not align with their own perceived treatment needs, which perpetuated barriers to treatment retention and recovery. The code “People Who Use Drugs Needs” was used to capture responses to this question, as well as any other segments in which respondents discussed unmet needs faced by this population. This included any findings related to treatment, social services, or mental health programming. For this analysis, any such segments were extracted and categorized into relevant subthemes.

Results

In this study, we characterize the ways in which PWID in Baltimore experience persisting gaps in available substance use treatment programming compared to their own perceived treatment needs, highlighting the adverse impacts of these unmet needs on their treatment retention and recovery. Of the 22 participants interviewed, 13 (59%) were male and nine were female. Thirteen (59%) identified as white and nine (41%) as African American/Black. Participants ranged in age from 24–69 years of age. Ten (45%) were currently residing in a substance use recovery program, and one participant was actively experiencing homelessness. The other 11 participants were residing in private homes owned or rented by themselves or a member of their network. Twelve of the 22 participants sampled (55%) were currently prescribed MOUD, three had been prescribed MOUD in the past but were not currently taking it, and two did not report their MOUD status. Participants described a range of gaps in substance use service delivery, which limited perceived positive program impacts and led to recovery barriers and persistent drug use.

Discussion

In this study, we analyze the first-person accounts from a sample of 22 PWID in Baltimore to explore how their experiences in substance use treatment align with their perceptions of an ideal treatment program. We highlight a persisting disconnect between their self-perceived needs and the services they have accessed, enumerating the adverse impacts of these unmet needs. Specifically, participants note that gaps in the addiction service landscape include (1) untreated mental health conditions, (2) structural barriers, including lack of effective incentive systems, inconsistent processes for accountability, and limited program durations, (3) the persistence of stigmatizing treatment from program staff, and (4) fragmentation in recovery services, including general treatment access barriers, a lack of job and life skills support, and unsafe housing environments during treatment episodes. While the engagement of processes such as Consumer Participation (CP) (also termed service user involvement) in the design and implementation of addiction services and treatment programs has been touted as a best practice (Goodhew et al., 2018; King, 2011), these findings demonstrate that many perceived treatment needs of PWID remain unmet within the addiction service landscape.

One noted reason for which CP may fail to produce meaningful changes within individual treatment programs is the complex, fragmented nature of the US's treatment infrastructure. This is particularly apparent in the case of participants’ reported desire for enhanced access to mental health care. To date, less than 30% of adults with co-occurring mental health and substance use disorders receive treatment for both (Jones & McCance-Katz, 2019). There are several evidence-based approaches to substance use treatment, which include a psychosocial or mental health component, including cognitive behavioral therapy, contingency management, and motivational enhancement (Dutra et al., 2008; Jhanjee, 2014). Yet while calls for dual-diagnosis care and models of integrated substance use disorder and mental health treatment have been in place for decades (Brousselle et al., 2010; Padwa et al., 2015), many treatment programs do not include a psychosocial component (Hoffman et al., 2019). This is in large part due to structural challenges, including the US healthcare system's fragmentation, differences in education and training of providers across specialties, and barriers to coordination of sub-specialty care (Padwa et al., 2015; Sterling et al., 2011). This study's findings suggest that system fragmentation continues despite years of calls for improved integration of substance use and mental health programming, highlighting a need for a renewed effort to enable individuals with OUD to universally access mental health care.

Some new, innovative service delivery approaches have emerged which may combat these fragmentation and structural barriers, including the Hub-and-Spoke model and Certified Community Behavioral Health Clinics. The Hub-and-Spoke model focuses upon integrative, patient-centered care for OUD through the integration of MOUD prescribing with behavioral health care delivery. The program “hubs” are opioid treatment programs staffed by addiction experts, offering comprehensive treatment particularly geared toward those in early recovery stages. Patients requiring less oversight and direct management are referred to “spokes,” or external, community-based settings, which support the continuity of care. Spokes may include housing, pain management, mental health, family services, and probation/parole support (Brooklyn & Sigmon, 2017). This novel approach has been shown to expand MOUD access and demonstrate improved outcomes among patients, including reduced opioid use, decreased emergency department visits, and reduced contact with law enforcement (Brooklyn & Sigmon, 2017; Rawson, 2017; State of Vermont Blueprint for Health, 2024). Certified Community Behavioral Health Clinics (CCBHCs) offer another approach to integrated care, designed to provide a comprehensive array of low-barrier, person-centered mental health and substance use disorder treatment services in one location. Components include crisis services, screening/assessment/diagnostic capacities, outpatient care, case management, and social services (National Council for Mental Wellbeing, 2020). A national evaluation of this program within eight initial demonstration states concluded that the CCBHCs show promise in improving care access, increasing the number of clients served, and expanding service capacity within these states (Mathematica, 2022).

While these models are promising, the US is facing shortages in its behavioral health and substance use disorder treatment workforce. In many geographic regions, few providers are trained to treat patients with co-occurring mental illness and substance use disorders (U.S. Department of Health and Human Services, 2018, 2020). In response, the Biden Administration prioritized efforts to build behavioral health/substance use disorder treatment workforce capacity. Alongside financial incentives to support practitioners’ training in these areas, the federal government called for the development of a core substance use disorder curriculum to be delivered across medical, public health, and nursing schools (The White House Executive Office of the President; Office of National Drug Control Policy, 2022). Universal access to basic substance use disorder treatment education and principles is crucial to prepare all future medical doctors to assess and treat the psychosocial comorbidities of individuals with OUD.

Participants also highlighted many persisting structural barriers which limited their treatment engagement. One example was treatment program duration, with many finding the programs they’d accessed were often too short to be effective. The substance use recovery process is complex and dynamic, often requiring many years of consistent effort. Recovery phases include early recovery (one to eleven months), sustained recovery (one to five years), and stable recovery (over five years) (Martinelli et al., 2020). Yet the majority of treatment programs within the US are short-term: in 2008, the average length of stay was 13 weeks for adult residential treatment programs and 12 weeks within intensive outpatient treatment (French et al., 2008). This mismatch could be attributed to the disconnect between the acute care model often engaged to treat substance use disorders, in which a single, short-term treatment episode is expected to sufficiently cure a disorder (Frone et al., 2022), and the reality of substance use disorders as a chronic condition. The chronic care model recognizes the potential need for multiple cycles of treatment, symptom remission/recurrence, and reestablishment of treatment before the achievement of sustained or stable recovery (Dennis & Scott, 2007; White & Kelly, 2010). Often, individuals who do seek treatment receive acute care in inpatient or residential treatment programs without access to lower intensity interventions to support continued recovery. Substance use treatment programming should exist on a continuum in line with the chronic care model, with features including longer treatment duration, opportunities for sustained engagement, and improved continuity of care options (Proctor & Herschman, 2014). For example, patients exiting acute treatment episodes should be immediately referred to lower intensity interventions such as partial hospitalization programs or intensive outpatient programs, then further care including psychosocial treatment, community programming, peer groups, or other forms of longer-lasting support.

Participants further articulated the harms they’d faced from punitive responses to their substance use. Several members of the sample had been incarcerated for drug-related offenses, leaving them marked by criminal records and still struggling with addiction after their sentences were completed. Research clearly demonstrates that incarceration as a response to substance use disorders is ineffective: data unequivocally show that imprisonment of individuals with substance use disorders has no statistically significant correlation with decreases in rates of overdose, substance use events, or recidivism, reiterating the conclusion that mandatory minimum sentences for drug offenses have few, if any deterrent effects (National Research Council, 2014; Pew Charitable Trusts, 2018). As the US grapples with the impacts of its historical criminalization of substance use, new approaches are being developed which aim to treat substance use disorder as an illness rather than a crime. Some states have begun to offer off-ramps for individuals charged with non-violent substance use-related charges, prioritizing access to treatment over incarceration. For example, the Drug Treatment Alternative to Prison (DTAP) program implemented in Brooklyn, New York, was a prosecution-led diversion program in which individuals convicted of nonviolent felony drug offenses were diverted to long-term, residential substance use treatment rather than a carceral facility (National Institute of Justice, 2011). Evaluations have found statistically significant reductions in recidivism rates among program participants compared to comparison groups. Other states have made efforts to reduce the number of individuals with substance use disorders who are incarcerated by rolling back mandatory minimum penalties and expanding probation and parole opportunities for individuals convicted of drug offenses (Families Against Mandatory Minimums, 2017; Pew Charitable Trusts, 2010, 2016). Finally, some jurisdictions within the US have engaged a de facto drug decriminalization approach, whereby prosecutors decline to bring charges for personal use possession and other low-level drug-related offenses (Rouhani et al., 2024). One evaluation of a de facto decriminalization approach in Baltimore, Maryland, found an extremely low prevalence of rearrest for those whose charges were diverted and no evidence of an increase in public complaints surrounding drug activity in the community during the policy implementation period (Rouhani, Tomko, Weicker & Sherman, 2023). Given our study's findings, we advocate for universal access to non-coercive substance use treatment options rather than incarceration among individuals charged with non-violent drug-related offenses and emphasize the need to scale up drug decriminalization and diversion policies.

Many participants also reported feeling unsafe in programs that included a housing component, wishing for a mixture of safety, oversight, and structure. Research on residential substance use treatment programs has exposed that some engage in deceptive marketing and can be exploitive to vulnerable individuals (Armstrong & Allen, 2017; Beetham et al., 2021; Lurie, 2019; Sforza et al., 2017). Investigations show that many residential programs are governed by little oversight and fail to deliver evidence-based treatment protocols (Lurie, 2019). One report concluded that the majority of individuals who do access substance use disorder treatment are not receiving evidence-based care (The National Center on Addiction and Substance Abuse at Columbia University, 2012), concluding that many treatment facilities receive inadequate regulation, little accountability, and lack consistent, national standards. We therefore emphasize the need for universal substance use disorder treatment standards and improved accountability systems.

Most participants also highlighted a lack of support for workforce development, job training, and access to employment opportunities within the treatment program landscape. Research shows that employment can be an effective tool in the recovery process, associated with reduced social isolation, suicide risk, homelessness, and economic instability (Mumba et al., 2022; Reeves et al., 2012). Employment can also be a valuable means of sustaining recovery (Substance Abuse and Mental Health Services Administration, 2020; Substance Abuse and Mental Health Services Administration, 2021a). Yet individuals with OUD face substantial barriers to finding and sustaining employment (Mumba et al., 2022; Sherba et al., 2018), including workplace stigma/discrimination, limited employment histories, relapse, lack of jobs open to individuals with a history of substance use disorders or criminal records, and lack of educational credentials (Mathematica and Eagle Technologies, 2021). Some work placement interventions have been tested to address this gap, including Workplace Supported Employment/Individual Placement & Support programs. This evidence-based strategy places people with substance use disorders and histories of mental illness into work placements within their communities and incorporates oversight from employment specialists and treatment providers (Frone et al., 2022; Substance Abuse and Mental Health Services Administration, 2009). Such programs have demonstrated effectiveness in increasing rates of employment, hours worked, and payment among participants. Further, they are associated with improved psychosocial outcomes, such as increases in rates of self-esteem and well-being (Cook et al., 2005a; Cook et al., 2005b; Marshall et al., 2014)

Despite programs such as these existing in some communities, they are highly limited and hard to access among most people with a history of incarceration associated with substance use. In the absence of such programs, employment access remains a significant challenge for those with a criminal record. This is evidenced by several participants who reported applying for jobs on their own but being turned down due to their criminal justice system involvement. Recovery-ready workplaces adopt policies that expand employment opportunities to individuals engaged in the recovery process, including those with a history of criminal justice involvement (U.S. Department of Labor, n.d.). The US Department of Labor has developed a toolkit specifically designed to help employers build their workforces through the hiring of such individuals (Federal Recovery-Ready Workplace Interagency Workgroup, 2023; Federal Register, 2023; Saloner et al., 2016). One recommendation is the adoption of “Fair Chance Hiring” practices, through which hiring decisions are made regardless of an individual's history of criminal justice involvement and/or substance use disorder treatment. Our findings demonstrate that people who use drugs desire such opportunities and would substantially benefit from access to work readiness training and employment placements.

Engaging consumers in the design and operationalization of addiction treatment services is a crucial means of ensuring that those programs meet the needs of the population they seek to support. Yet there are many known barriers to including people who use drugs in the core activities which would facilitate this type of effective end-user engagement. In particular, imbalances persist, which frequently elevate the voices of those in power over those of the groups they intend to serve. Researchers, policy makers, and health care delivery workers often perpetuate these divides further by holding stigmatizing attitudes toward people who use drugs or refusing to see them as equals in the decision-making process. Amidst efforts to advocate for improved drug treatment access for people who use drugs, for example, one US-based drug user union highlighted experiencing a clear power differential between their members and research collaborators which left many feeling dismissed and excluded (Simon et al., 2021). While systemic and structural factors may account for many of the treatment barriers reported in this study, many participants faced stigma and discrimination from treatment staff. CP processes cannot be effectively adopted within programs or services led or staffed by individuals who perpetuate stigmatizing and discriminatory attitudes toward people who use drugs.

The harmful impact of stigma from healthcare providers is well documented (Paquette et al., 2018). This study suggests that to improve treatment program capacity, efforts must continue to support providers to reduce negative attitudes toward people who use drugs. Several interventions have been implemented to reduce healthcare stigma toward people with substance use disorders, including those incorporating online education, in-person activities, direct contact with individuals in recovery, or a combination of these strategies. Generally, those incorporating motivational interviewing and communication training have been identified as most effective, while interventions engaging consumer contact (e.g., direct contact with someone in recovery) are associated with sustained impact on improving attitudes (Bielenberg et al., 2021). Such interventions must be invested in and prioritized across medical and treatment settings within the US.

The results of this study should be examined in the context of its limitations. The participants interviewed were recruited from the database of a community-based research clinic affiliated with a major research institution. Their perceptions and experiences may therefore differ systematically from a population of PWID who have less access or connection to community-based services. In addition, there exists a wide range of treatment modalities (differentiated by philosophy, delivery mechanism, duration, and setting). However, the interview guide was not designed to capture participants’ experiences with/perceptions of unmet needs within each distinct modality. Further, the research team did not ask participants to enumerate their full history of experiences with substance use treatment programming, making it challenging to fully contextualize each individual's perceptions of gaps in the service landscape based upon the specific services they’ve accessed. This leads to a loss of nuance in the results, as treatment experiences and unmet needs cannot be further characterized within distinct treatment modalities. This represents an important opportunity for future research to better understand whether certain treatment types, philosophies, or settings are more effectively addressing their consumers’ needs.

Conclusions

This paper highlights the persisting disconnect between PWID's desires for substance use treatment and the reality of the programs they have accessed. Study participants report a range of unmet treatment needs, including gaps in access to mental health services, persisting stigma from providers, overly short programs, punitive treatment models, unsafe housing, and limited opportunities for the development of life skills or support for employment access. These gaps are associated with adverse recovery and treatment outcomes among participants and demonstrate the crucial need to continue efforts to scale up consumer-led treatment models. However, these findings demonstrate that systemic barriers remain obstacles to CP processes, limiting their widespread implementation and perpetuating treatment gaps among people who use drugs. With this work, we strive to elevate the voices of treatment consumers, highlighting their unmet needs in their own words, with the hope that these accounts can be used to advocate for system-wide change. As the US continues to suffer from the impacts of the opioid crisis, it is crucial to prioritize participatory models, ensuring that individuals with lived experience have the power, respect, and authority to design and implement treatment programs that are best suited to meet their recovery needs.