WE Care Coalition
A new index measures the extent and depth of addiction stigma
By Matthew Stefanko, Brea PerryandAnne KrendlOct. 27, 2021
“Ifinally build up the courage to tell the doctor I need help. Staring at the floor, I tell him the truth about how much I am drinking and how many pills I am taking. As I look up, our eyes meet. His face is aghast. He quickly looks away. With his back turned to me, he mumbles something to the effect, ‘We don’t treat those issues here.'”
That is a story from Chad Fahlberg — a person in long-term recovery recounting his experience facing stigma due to his substance use disorder.
Addiction stigma is a set of unfair, negative, and often discriminatory beliefs directed toward individuals with substance use disorders. These views can erode their self-worth, create social isolation, and reduce access to care, which exacerbates the problem. It also clouds the nation’s ability to coalesce around meaningful solutions, including treatment, harm reduction, and recovery supports and services.
In 2020 alone, more than 93,000 people in the U.S. died from overdoses — the highest number ever recorded. Addressing this epidemic during a global pandemic is extraordinarily challenging. Covid-19 has worsened the crisis by increasing economic precarity, imposing social isolation, and reducing access to treatment and recovery services. Structural racism and health inequities pose additional burdens that have contributed to addictions and overdoses nationwide.
There are a number of ways to make real progress in the fight against addiction. One of them is confronting the inescapable fact that the stigma and discrimination associated with substance-use disorders are making the crisis more difficult to overcome. Despite decades of action from nonprofits, health care providers, those with lived experience, and government agencies, stigma remains one of the most significant and persistent drivers of negative outcomes for people with substance-use disorders. It propagates the disease, creating barriers to treatment, harm reduction, and recovery supports and services.
Stigma can’t be eradicated without reliably measuring and monitoring it. Yet there have been few mechanisms for regularly assessing levels of stigma or progress in combating it. Large, federally funded efforts like the U.S. National Stigma Studies, which are administered as part of the General Social Survey, are extremely costly. That means they are conducted infrequently and provide only a few snapshots of the stigma landscape over the course of decades. What’s more, they do not provide insight into whether the nature or magnitude of stigma differ across types of addiction. That’s important, because stigma is not a one-size-fits-all construct, and there may be distinct factors that drive stigma across substance-use disorders. Accurately identifying those factors is key for developing interventions that are effective in reducing stigma overall.
In addition, most interventions that attempt to reduce stigma, like public health campaigns, are not accompanied by rigorous evaluation that would provide an opportunity to measure meaningful impact and change.
To address these gaps, Shatterproof (which M.S. works for), Indiana University (where B.P and A.K. are faculty members), market research firm Ipsos, and The Hartford, an insurance company, developed the Shatterproof Addiction Stigma Index to establish a baseline measure of public attitudes and beliefs about substance-use disorders, and to monitor stigma related to them over time. The index also measures the perceptions of people with substance-use disorders, including experiences of social exclusion and internalized stigma.
With a comprehensive set of more than 50 measures of stigma completed by a representative sample of nearly 8,000 U.S. residents, this is the largest and most expansive survey on addiction stigma ever fielded. By establishing a benchmark for future measurement, it will provide a robust tool to gauge progress and hold Shatterproof and national leaders accountable for results.
The index uses a vignette strategy. In it, each respondent is randomly assigned to one of 10 vignettes describing a person with an addiction to a substance — alcohol, prescription opioids, heroin, or methamphetamine — or a person who was addicted to those substances but is now in recovery. This approach makes it possible to compare trends among substances and across active use or recovery, providing information that will inform more targeted interventions.
Findings from the index have revealed that levels of stigma toward individuals in long-term recovery from heroin addiction are more negative than attitudes toward those with active addictions to prescription opioids.
The addiction stigma index contains three separate indices: One measures public attitudes and beliefs about people with SUDs — public stigma. Another measures institutional discrimination against people with substance-use disorders through laws and policies — structural stigma. The third measures feelings of self-devaluation and internalized stigma experienced by people with substance-use disorders — self-stigma.
Prior research suggests that these three components manifest in different ways and may present disparate barriers to treatment and recovery supports and services. For this reason, measuring all three provides more comprehensive insight into stigma than focusing on only one.
These indices are comprised of a set of individual measures designed to tap into complex underlying constructs that are otherwise not directly measurable. In future years, repeating the Shatterproof Addiction Stigma Index will make it possible to measure changes in these three distinct but interrelated components of stigma. That’s a vital component of overall stigma reduction because making progress on one component won’t be sufficient to prevent marginalization and significant secondary harm. Instead, continued progress on all fronts will be necessary for long-lasting change.
The survey has already revealed useful — and worrisome — insights. For example, it extends findings from prior smaller studies by demonstrating that three-quarters of respondents consider someone with an active substance-use disorder to be untrustworthy. Even individuals in long-term recovery are met with suspicion; more than one-third of respondents reported being unwilling to move next door to a person in recovery or to have them as a friend, and more than half said they would be unwilling to have someone in recovery marry into their family. Most distressing, fewer than one-quarter of respondents view addiction as a chronic disease.
Responses among health care professionals are especially alarming given their ability to directly affect access to care and the quality of care, and thus health outcomes, of people with substance-use disorders. The survey showed that levels of public and structural stigma in this group are similar to those in the general population. Health care professionals’ limited knowledge about medications for opioid use disorder and stigmatizing views toward them is appalling. Among health care professionals surveyed, nearly half endorsed the harmful belief that treating opioid-use disorder with medications for it, like buprenorphine or methadone, is simply, “substituting one drug for another.”
The results of the inaugural Shatterproof Addiction Stigma Index are distressing, but they are also incredibly important. Quantifying the extent and depth of negative perceptions of individuals with substance-use disorders — not only among the public but also among employers, health care professionals, family members, and even those with substance-use disorders themselves — is the first step toward changing them.
Addiction-related stigma has been allowed to fester in the U.S. for far too long. It has infiltrated institutions and public perceptions, divided communities, and erected barriers to health and recovery that people with substance-use disorders want and deserve. The country has an opportunity — and an obligation — to chart a new path informed by rigorous research and data and to dismantle the discrimination and misinformation that threatens recovery.
Matthew Stefanko is the vice president of Shatterproof’s National Stigma Initiative. Brea Perry is a professor of sociology and the associate vice provost for social science research at Indiana University, Bloomington. Anne Krendl is an associate professor in the department of psychological and brain sciences at Indiana University, Bloomington. Perry and Krendl were consultants for the Shatterproof survey.