Even as the opioid epidemic makes front-page headlines across the country, stigma persists as a barrier to recovery.
An anti-stigma campaign designed in Huntington, West Virginia, has been an effective initiative for changing public sentiment and educating residents of both large cities and small communities across Appalachia.
Jodi Maiolo, MPH, CPH, special projects coordinator for Marshall Health Family Medicine Division of Addiction Sciences, and Shanen Wright, director of innovation for Quality Insights, are among those who worked on the campaign. At the upcoming Rx Drug Abuse & Heroin Summit, Maiolo and Wright will discuss the project and how its takeaways can be used to assess stigma in other communities.
First, though, they spoke with Addiction Professional about whether stigma is more prevalent in rural or urban communities, why stigma has remained a challenge even after years of the opioid epidemic being a Page 1 issue, and how to more effectively communicate with an audience when trying to address stigma.
Editor’s note: This interview has been edited for length and clarity.
Do you find that stigma currently is a more prevalent issue in rural areas vs. urban areas, and if so, do you have any theories as to why?
Maiolo: That’s a tough question. I’ve traveled across the state over the past few months talking about our work, and the reaction is very different in all the places we go. I know there’s a stigma about rural people and what they’re educated on. What I’ve found is that it really didn’t matter how rural the parts of West Virginia I went to were. I think the stigma is the same just about everywhere we go. I don’t think it has so much to do with where they are. Maybe it’s Appalachia as a whole. There are a lot of highly populated cities in Appalachia that I see the same level of stigma as I do in less populated areas.
Are you surprised that stigma is still a challenge for the field at this point? The opioid crisis has made front-page headlines in recent years and has long been a hot-button issue. Given all that, is it surprising that this is still something that needs to be addressed?
Maiolo: No, mostly because there haven’t been major projects or funds directed at addressing that barrier to treatment and recovery. If everybody knows about it, that’s great. We know it’s been a barrier for years. But until there is a push for funding or programs to focus on addressing stigma and making people more aware of that, it’s not going to go away. It’s not anybody’s fault. People were dying, and we needed to focus on the most immediate things we could work on. Now that we’ve made progress locally, we’re able to start working on under-addressed issues.
Wright: The key is to not just build awareness of stigma, but educate people on the science of addiction. Addiction is a disease that is treatable. You wouldn’t stigmatize someone with Alzheimer’s, Parkinson’s or other diseases, yet a lot of people still see substance use disorder as a moral shortcoming or a conscious choice. It’s important not only to be aware of it, but to give people facts. You mentioned that it’s always on the front page of the paper and a hot-button issue, one of the things we’ve tried to do is work with the media so that they can accurately report on the facts surrounding substance use disorder and not be stigmatizing in their approach. I don’t think they are stigmatizing by design. I think it’s a lack of awareness and education about the facts surrounding addiction.
What are some effective—and ineffective—tactics for addressing stigma?
Maiolo: I can give you the most ineffective one right off the bat, and that is when people come in from areas outside of the local community and just tell them how it is and expect them to accept that for what it is because that’s what they say. That’s true for everywhere, but particularly in Appalachian culture. You’re talking about a group of people who have a well-defined set of morals and values across the region, and if it’s not approached from an area of cultural competency, then people will not respond and we’ll lose them. If anything, it turns them off when, for example, someone comes in from D.C. or New York and says, “This is stigmatizing. Don’t say this. Don’t say that.” I can’t tell a rural community or a well-populated community why they have to reduce stigmatizing language or behaviors they have if they don’t understand why we’re telling them that, if they don’t understand the science behind why we say addiction is disease. To me, that’s the most ineffective way: to just come in and start telling people that they’re wrong. It doesn’t work like that.
Wright: One of the things we have found to be engaging and effective is success stories. One of the components of our campaign featured a wonderful person who we worked with who is in long-term recovery and was brave enough to put her face out there in a video which was viewed more than 250,000 times in three months. Showing a success story and showing having that bravery to stand in the face of stigma and say yes, I am a person in recovery, that has been engaging for people in need of recovery, the general public and also for healthcare providers who are suffering an element of compassion fatigue or feel certain biases or misconceptions from what they see day to day. That dovetails with what Jodi said about an outsider wagging a finger at you, saying you’re using the wrong language. Rather, a real, local person—even in the well-populated areas of Appalachia—everybody knows everybody, having those people speak out and creating a platform and doing it in such a way that people are engaged and want to watch these videos has shown to be effective, not just anecdotally. One of the targets of our digital media campaign that was most successful was the video I mentioned. Nearly 70% of the people who watched it, watched it all the way through. They didn’t hit the skip button or close it out. They wanted to hear this individual’s story of recovery. That’s one aspect that, at least preliminarily, we’re seeing be effective.
Maiolo: One of the things we couldn’t do for this campaign—it wasn’t in our scope—but one of the things we recognized as one of the best methods, especially if we’re not getting through with any media or education, people have to start listening to and engaging with the people they’re stigmatizing. A good encounter or conversation can do more to reduce stigma than we can ever do just by talking to people about it.
Understanding there is still work to be done on this front, do you feel like significant progress has been made over the past few years?
Maiolo: The best example of the changes we’ve seen is what Shanen mentioned: People are now willing to come out, whether they look like they’ve had it all together or came from a good family or they didn’t have that stereotypical look of what people thought substance use looks like, them coming out and saying “I’m in recovery” or a family saying “we are struggling with a family member,” people coming out and sharing their stories has been one of the best examples of that reduction in stigma over the past few years.