Since 2017, researchers from the Rockefeller Institute of Government have been interviewing New Yorkers on the frontlines of the opioid epidemic—including local officials, law enforcement, health and treatment providers, and people who use drugs and their families. During the past year, they have been talking to people who have used drugs in New York City, asking them what they would like policymakers (and everyone else) to know about what drug use and recovery look like, and what we might do to turn the tide on overdoses and deaths in the state. From these ongoing conversations, we identified five lessons from the perspective of those seeking services that policymakers and practitioners in New York should be aware of.

People with substance-use disorder (SUD) generally face significant barriers to accessing services. Those barriers can result from policy, an underlying lack of familiarity on the part of policymakers and practitioners who do not regularly work with clients, and consequences of the existing treatment and recovery ecosystem. People with substance-use disorders take many different paths to recovery, and some of those paths require multiple types of support. These pathways and support services include detoxification, the process by which the body is cleared of drugs; treatment, where individuals either live in a residential facility with other patients or where individuals attend during daily sessions only; supportive housing; and community-based support programs such as 12-step meetings, self-help groups, and recovery community centers that assist people with substance-use disorder in their longer-term recovery after acute treatment.

The people we spoke with who experienced these different services offered lessons about what works and what does not work as well for them with implications for policy. They also explained what it is like to be a part of a stigmatized population and how we might shift how we think about and treat people who use drugs.

Lesson #1: Transitional care and coordination are necessities.

Even when there are services available, recovery can be hard to sustain when there are gaps in care between services that individuals can fall through. For example, if an individual goes to a 28-day in-patient treatment program but has nowhere to go once it’s over, they may find themselves in the same environment and living in the same situation that allowed their substance-use disorder to persist in the first place. A common sentiment among those we interviewed was the need for more transitional planning and programs, services, and housing that reflect the different stages of recovery. Several people felt that there were not enough facilities to act as bridges between the earliest stages of recovery, like detoxification centers and inpatient treatment, and long-term independent living. They expressed that it would be beneficial to people seeking help if short- and long-term care facilities were affiliated or connected with one another. That way, once someone finishes their initial detoxification, for example, they can be automatically referred to treatment, and then to a facility or program that works with them on the skills for long-term living in recovery. Short of that transitional continuity, every gap between services is another way for people who need support to fall through the cracks in the system.

Lesson #2: People need to receive services in a timely fashion without additional barriers.

Programs for detoxification, treatment, and long-term supportive housing often operate independently, each with its own criteria and process for admission. One of the individuals we interviewed, Leah, told us about the hoops she had to jump through to get help. She first went to a hospital to receive immediate medical care for other health issues where she decided that she wanted to get help for her substance-use disorder, too. She went through detoxification and rehabilitation before she could get into short-term treatment before she could qualify for a long-term care residential facility. Another interviewee, Ashley, spent 39 days in a treatment facility where, on her own, she researched and found a sober living facility. After her counselor contacted the facility, she had to go through a two-step interview process before she was admitted. In our own interview with her, she expressed her gratitude for getting into a residential home. She knew many people were still waiting to get into similar places. Without timely access to the next stage of care, individuals face potential barriers to recovery. Research demonstrates that there are many barriers to care, and individuals we spoke to vividly echoed these themes in our discussion with them.

Lesson #3: Healthcare professionals must consistently treat people who use drugs with SUD-informed care.

Several interviewees shared their experiences with hospitals and programs that made care more difficult to access. Nancy explained that to get into a detox program for cocaine, she was told to drink alcohol so that she would have it in her system and be admitted due to a mistaken belief that one cannot experience physical withdrawal from cocaine because the symptoms are neither as visible as opioid withdrawal or dangerous as alcohol withdrawal. Venus shared that while she was in recovery she visited a hospital for stomach pain and when she was admitted the staff hooked her up to an IV that had the drug morphine in it. Morphine is an opioid and receiving it even in a medical setting can lead people with a substance-use disorder to relapse or become physically dependent again. She was not asked beforehand for any information about her allergies or drug history. These experiences underscore a disconnect between the goals that SUD programs and the broader healthcare system have and clients’ experiences of them. SUD-informed care ought to be integrated into how healthcare is provided in a variety of settings.

Lesson #4: Information about services should be made more accessible through both formal and informal avenues.

Another common sentiment amongst the people we spoke to is the importance of informal networks as sources of information about care. Many people in recovery explained that they did not learn about care facilities from formal networks, e.g., through government agencies spreading awareness or members of the healthcare profession. Instead, when they needed a detoxification or treatment facility or were looking for long-term care, they either relied on their networks of fellow people who use drugs for information or they did the research to find resources themselves. One person we interviewed observed that in their experience the problem with treatment was not a lack of opportunity or space within facilities but the lack of awareness that people have of the fact that these places exist. Several people cited their need to be resourceful when they sought help or else they would have not found it at all. Although agencies, such as health departments, and care providers may engage in extensive formal outreach efforts they may not always reach individuals who need help when they need help, underscoring the need for more research and more information dissemination that takes into account both the formal and informal sources that individuals turn to.

Lesson #5: People who use drugs don’t feel like they are seen as human.

Stigma towards people who use drugs is both common and detrimental. Interviewees recounted their experience of being stigmatized by others as “bums” and “junkies.” One interviewee, who described herself as a mother, college graduate, girlfriend, and former drug user, explained how we must get rid of the stereotypical idea of who someone with a substance-use disorder is. She noted how “people think that all addicts are uneducated or homeless or don’t have family or people that love them.” And, while some people who use drugs do struggle with homelessness or may not have high levels of educational attainment, that is not true for everyone with a substance-use disorder. Many people have shared characteristics or experiences with non-drug users, even if we don’t realize it.

Yet all too often people who use drugs are not seen as fully human. Another interviewee, Cornelius, reflected on how people will walk on by someone passed out on the street. He asked, “How could they just walk past a human life and not even check on it?” These people on their way to work “don’t even know that they don’t care.” Stigmatized ideas of those dealing with substance-use disorder can lead toward (in)actions and underpin public opinion that ultimately shapes policy.

People who use drugs are often the object of federal, state, and local policies. They are not as often consulted in the design and implementation of public policies. This disconnect can lead to policies that work better on paper than they do in practice, and it can lead to stigmatized perceptions of people who use drugs. Creating policies that better serve those struggling with addiction starts with centering and viewing people who use drugs as people before anything else.

The people we spoke to offered lessons for policymakers and the public alike.

ABOUT THE AUTHORS

Orobo Obaro-Ogbovoh is an undergraduate student at the University at Albany
Patricia Strach is a fellow at the Rockefeller Institute of Government