“I will always remember the young couple I met in Oklahoma who had lost their son to an opioid overdose,” recalls U.S. Surgeon General Vivek Murthy, M.D.
Previously in their lives whenever they had a major struggle, the couple told Murthy, neighbors would come over. They’d drop off food, visit, and sit with them in their living room, see if they were okay.
“But when their son died after opioid use disorder, it was silent,” Murthy says. “Nobody came over. Nobody visited.”
As the nation’s top public health ambassador, Murthy has visited with many families of victims of the nation’s deadly opioid overdose epidemic. More often than not, he says, people don’t know what to say or what to do when a child or young adult experiences a fatal overdose. The stigma around substance use disorder can be crushing and expansive: affecting the individual, family, friends, and everyone around – including teachers and healthcare providers.
But it doesn’t have to be that way, urges Murthy, who spoke with NIH Director Francis Collins, M.D., Ph.D., about the stigma of substance use disorders during a virtual conversation at the second annual Helping to End Addiction Long-term® Initiative, or NIH HEAL Initiative®, Investigators Meeting in May 2021. Although the main topic of their conversation was the impact of loneliness on health and happiness, stigma was a central focus, since it remains a significant barrier to treatment and care of people with substance use disorders.
For one, words matter, and many resources are available to help people reframe the way we talk about substance use disorders. But it’s also important to highlight providers doing good work.
“Before I started providing treatment for people with opioid use disorders, these were the patients I dreaded the most,” Murthy recalls of one such conversation with a primary care provider. “Because I felt powerless, and I felt frustrated, and I didn’t know what to do,” the provider added, “but now, this is some of the most rewarding work that I do.”
HEAL-supported research questions on stigma
Does stigma-reduction training using the Opioid Wizard clinical decision-support tool reduce provider stigma?
Can stigma-reduction counseling and tangible rewards reduce race-related stigma and increase treatment for opioid use disorder?
What is the value of mobile apps to measure and overcome stigma associated with opioid use disorder?
Can stigma-reduction approaches be useful for people with chronic pain receiving hemodialysis?
Do interviews with cancer survivors and their health providers help us understand sources of chronic pain stigma?
What is the value of peer recovery coaches to improve opioid use disorder treatment and services among low-income populations who are often stigmatized?
Can psychotherapy approaches address stigma in people with both opioid use disorder and chronic pain?
Research Can Help
Widespread lack of information and understanding about mental or substance use disorders can lead to public attitudes of shame and blame. Stigma is a well-recognized barrier for people with mental illness, leading many to avoid prevention or treatment programs. But as articulated by a 2016 report from the National Academies of Sciences, Engineering, and Medicine, research has lagged to inform stigma-reduction efforts surrounding substance use disorder. Deeply rooted stereotypes – harmful and disrespectful beliefs about a group – drive fear and blame that keep people in the shadows, avoiding help that could be life-changing or even lifesaving.
Stigma is so interwoven into our lives that it can be hard for researchers to study it as it surfaces within individuals, in social environments, with healthcare providers and health systems, and many other settings. Dismantling stigma at all levels is a priority for the NIH HEAL Initiative, and researchers are conducting studies on how to identify and alleviate stigma in everyday clinical encounters with people who have opioid use disorder, pain, or both.
As part of the NIH-funded Hemodialysis Opioid Prescription Effort (HOPE) study, Manisha Jhamb, M.D., M.P.H., of the University of Pittsburgh Medical Center, is studying stigma-related barriers to pain treatment with buprenorphine in individuals with end-stage kidney disease-related chronic pain who are dependent on opioids. Using interviews with patients, clinicians, dialysis organizations, and insurers, Jhamb and patient-researchers will use a scientific method to derive information from the interviews that informs development of a multi-level stigma intervention adapted from one used with people with HIV/AIDS. They will use a research-backed scale to measure stigma levels before and after the intervention.
Other initiative-funded research is targeting patients with both opioid use disorder and chronic pain. Nora Nock, Ph.D., of Case Western Reserve University in Cleveland, Ohio, and Amy Wachholz, Ph.D., of the University of Colorado, Denver, are working on disentangling horizontal and vertical stigma. The former arises from peers, such as other people who use drugs or people in recovery, who judge based on the type and severity of past drug use and treatment approaches (for instance, considering methadone substituting one drug for another). In contrast, vertical stigma from healthcare providers, insurers, or even treatment center staff can also hinder recovery. This research is unique in tackling multiple types of stigma in this hard-to-treat population of people with both chronic pain and addiction. The scientists will use existing standardized surveys to interview patients, providers, and peers, toward customizing a psychotherapy program that is currently being tested with individuals in residential drug treatment facilities. If successful, they hope to adapt the approach for use more broadly in outpatient settings.
Stigma baked into healthcare systems is also a formidable challenge wanting for research. Most places people receive care, such as methadone clinics and addiction treatment centers, are not integrated into healthcare systems. Thus, routine screening for substance use disorders may not occur, and clinicians often don’t have sufficient training or knowledge about addiction treatment to know what they don’t know: a gap that leads to a missed opportunity to diagnose and treat preventable deaths. To meet this need, researchers funded by the NIH HEAL Initiative are testing electronic health record prompts – such as the Opioid Wizard – and stigma-reduction training for providers.
A Teachable Moment
“I’ll never forget the moment that really changed things for me as an individual and us as a hospital,” explains Richard Bottner, D.H.A., PA-C, an assistant professor in the Division of Hospital Medicine at Dell Medical School at the University of Texas at Austin. He also provides clinical care at Dell Seton Medical Center.
“My patient was sitting comfortably on the sofa in his hospital room, laughing, smiling, and playing Led Zeppelin on air guitar,” recalls Bottner. The patient went on to tell him, “I am so happy, I feel like I am finally being treated as a whole person, like a normal human being.”
During a previous stay for a heart infection, the patient had been found injecting heroin into his intravenous tubing, prompting alarm from the hospital staff. Back then, the same patient – then on his third readmission for a heart infection caused by two decades of drug use – had sung a very different tune to his care team.
“ ‘Nobody cares about me, [the hospital] only cares about my infection, not the other things that are making my life so hard,’ ” Bottner recalls the patient saying.
“That’s when it dawned on me that what the patient really needed was recognition of his addiction and a path to treatment, recovery, or harm reduction,” Bottner explains.
After relating his story, the patient received buprenorphine to treat his opioid use disorder – the main illness affecting his life, Bottner notes. “His withdrawal symptoms had dissipated, and he was in much less pain.
But, he adds, “Perhaps the bigger impact was that we approached this fellow human being with substance use disorder as a patient deserving of care rather than as a problem.”
Through learning about stigma and developing tools to help providers avoid it, scientists aiming to increase access to addiction treatment in hospitals are taking an important step toward tearing down stigma, and the issue deserves to move to center stage for much greater awareness.
Research on how to change behavior and practices will likely steer change. The topic was discussed in detail at the June 10, 2021 Stigma of Addiction Summit, co-organized by Bottner and the nonprofit organization Shatterproof and sponsored by the National Academy of Medicine’s Opioid Action Collaborative (the NIH HEAL Initiative is a member).
Focus on the Positive
“We’ve got to champion the people who do it and do it well,” advocates Surgeon General Murthy, about focusing on the positive to upend stigma. “I would love to see more hospitals, for example, profiling primary care doctors and others who are providing care for those with substance use disorders.”
That means changing the conversation by rewarding those providers who consider substance use disorders treatable conditions, not lapses of willpower or character flaws.
Although dismantling stigma may seem like an uphill battle, finding resilience can be a powerful force – and people need to know what works and how to do it.
“The ways that we get around it are, number one, we make it easier for clinicians to treat people with opioid use disorder,” Murthy says.
Words matter, but behavior change is what is needed to push past the devastating effects of stigma. HEAL research results will continue to inform this process, so that people who need, and deserve, treatment are respected and can find a long-term path to recovery.
Learn More About the NIH HEAL Initiative
Read the NIH HEAL Initiative Research Plan, the 2021 Annual Report, and more.
Breaking Through the Wall of Stigma
For many people, the only thing harder than having an opioid use disorder is living with stigma. Its heavy weight can make the physical, mental, and emotional anguish of addiction much worse.