“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

Background Participatory models can facilitate the design of substance use treatment programs that are best equipped to support their end users, yet many structural barriers limit people who use drugs from effectively engaging in decision-making roles. This study explored how well substance treatment programs are meeting the needs of a group of people who inject drugs (PWID), highlighting a persisting misalignment between their perceived treatment needs and actual treatment experiences. Methods 22 PWID completed one or two in-depth interviews between April 2023 and March 2024. Eligibility included having injected drugs in the past six months and reporting one or more lifetime experiences of trauma. A thematic analysis was conducted to synthesize participants’ descriptions of treatment gaps and the adverse impacts of these unmet needs. Results Participants reported a range of unmet substance use treatment needs, including (1) a lack of integrated mental health care; (2) insufficient incentive systems, punitive forms of accountability, and overly short programs; (3) persisting stigmatization from treatment professionals; and (4) limited recovery supports, including facing incarceration over treatment, unsafe housing spaces, and no opportunities for life skills development or employment access. These treatment gaps were associated with adverse substance use and recovery outcomes. Conclusions These findings demonstrate that many treatment programs continue to operate without meeting the perceived needs of their end users, suggesting the importance of scaling up consumer engagement models in the substance use treatment landscape. Participants highlight many opportunities for programmatic and policy-level changes that would enable treatment programs to better align with their needs. These include expanding the mental health workforce, adopting fair-chance hiring practices, and prioritizing system-wide efforts to reduce stigma toward people who use drugs. Finally, they reinforce the importance of adopting a non-punitive approach to substance use that treats opioid use disorder as a chronic condition rather than a crime.