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For more than a year, a team of folks from 100 Days in Appalachia and the Opioid Policy Institute have been working on ways to address unintentional stigma that often appears in reporting on addiction. In September, as part of Recovery Month, we unveiled the first in our series of resources and training materials under Reporting on Addiction, available to professional and student journalists alike.
But we certainly aren’t the first or the only group working to make change. Dr. Nora Volkow has been leading efforts to combat stigma not just in the media, but in the medical field at large in her position as director of the National Institute on Drug Abuse at the National Institutes of Health.
As a research psychiatrist, Volkow’s work has been significant in our changing understanding of addiction as a disease of the brain – one from which recovery is possible. She spoke with 100 Days’ Ashton Marra about addiction, stigma and the role of journalists when reporting on both topics.
This interview has been lightly edited for length and clarity.
Ashton Marra: What is addiction and what is a substance use disorder? Are these things the same?
Dr. Nora Volkow: An addiction is the most severe form of substance use disorder. It’s actually that transition where an individual has stopped taking the drug just because they’re making that decision and they want to feel good into a situation where they can no longer stop taking the drug even when they want to do so. And the cost is actually consequences to their health and their well being. So, addiction is defined as that transition from choosing to take the drug for pleasure into the loss of control over that intake with negative consequences to the individual.
AM: Can you fit the term chronically relapsing brain disease into that definition of addiction? How did those two things correlate? Or are they different?
NV: No, they are not separate. Addiction is a disease of the brain, but the changes that it produces are long lasting, and that’s why we refer to addiction as a chronic disease of the brain. And the other characteristic is that it is associated with periods where the individuals are able to refrain from taking drugs, and then periods of relapse. That’s why it’s actually considered a chronic relapsing disorder.
Now, with repeated treatment, what starts to happen is that the probability of those relapses decrease, and with time, they basically no longer appear. So the goal of treatment is to bring someone into that stage where they are actually much more stable. Nonetheless, recognizing that because it is a chronic disease, you always have to be mindful of the possibility that if there are other circumstances, that individual always have a risk of relapsing.
AM: So relapse is possible, is recovery also possible?
NV: Absolutely. Recovery is very possible. There are many people that have reached recovery and lead very perfectly successful lives.
Overall, though, we don’t speak so much about recovery, unfortunately, and as a result of that, people don’t know it’s possible, particularly when they are addicted themselves and struggling to actually stay away from drugs, and the families are desperate. They don’t realize that yes, recovery is achievable, and that people that have been in the same serious circumstances, that find themselves hopeless and helpless, are able to completely recover. So it’s important for us to communicate that absolutely, addiction can be treated. And recovery is very achievable.
AM: How does stigma fit into that lack of communication about recovery?
NV: Well, stigma is a key component that you see across all areas we call the cascade of the chronic disease of addiction. From even the use of drugs, people basically feel ashamed, and they don’t necessarily convey this.
So, if you’re a physician and you’re evaluating someone, you need to actually ask the question to the person if they are taking drugs in a way that they are not going to be defensive. Because in many instances, patients will feel ashamed and will not tell you, and that is a result of stigma.
And as people become addicted and they lose control, the stigma is internalized even more, because they feel that this is a moral weakness in themselves. I mean, this is the way that society portrays them so they are ashamed of themselves, of having these problems, and when you are ashamed of something, you try to hide it. This is exactly the opposite of what we want. We don’t want patients that are struggling to stay away from drugs to hide. We want them to come forward and ask for help. But that requires, of course, that the healthcare system does not treat them in a discriminative way, because if they do that, they are just going to push them further. But nonetheless, the stigma still permeates very much the way that healthcare systems in many places treat them.
And then also as these patients are trying to engage themselves into the community, many in the community still reject people with addiction. As a country overall, for example, we have criminalized many people for their drug use and that perpetuates the stigma further because it’s seen again as a wrongdoing, whereas, if we think of other diseases, we don’t conceive them as wrong doing. In many instances some of the recovery communities do not want to speak up because they actually want to keep this as a private matter. Every circumstance is different and we need to respect the privacy of every person, but we need to respect the willingness and the desire of someone to speak about it.
So in this respect, it is not any different from other diseases. For example, take cancer, there are some patients that have cancer that want their privacy, and they don’t want to speak about it, and we should respect it. But then there are other people that feel by communicating, they actually can help others. And in recovery, it’s the same situation. I’ve seen it many instances, how valuable it is for others to see that recovery is achievable. So by speaking up, by saying of yourself, ‘I had that problem and I was able to overcome it,’ is actually a way that others can see an example that recovery is possible.
AM: Can you talk about the link between stigma and discrimination?
NV: Both of them are very closely linked, stigma and discrimination. When you are stigmatizing someone, basically, you are discriminating them because, to start with, you think less of them. When a person that is being stigmatized, they are being discriminated against, they are not being treated the same way. And discrimination is, I think, one of the most harmful things that we can do to other human beings. Discriminating again, whether it is a child, an adolescent or an adult, actually creates a sense of rejection and isolates the person.
AM: What is the role or the responsibility for journalists and student journalists in combating stigma in their own communities, as they do this kind of reporting on addiction?
NV: I think that journalists probably are among the most important players to change a culture in general. And in this case, we’re speaking about changing the culture of stigma.
We get the perspectives of the world outside of our own through media and journalism, and as a journalist, you have the responsibility of researching a subject matter and then communicating about it in a way that actually is reflective of what you have been able to observe.
In this case, the notion of how you as a journalist can change that culture of discrimination, that’s a challenge of communication. What is the message that you can give that so eloquently clarifies that it’s devastating? You can use a narrative or you can use a story, that’s what journalists learn to do. They are experts in communicating, and communicating, I think, it’s an extraordinary job. I see it as my responsibility to convey my message to you as a journalist in a way that it’s clear, but the journalist then has to take that information and convey it in a way that is going to be not just scientifically meaningful, but emotionally meaningful.
In fact, this is the way that our brain works, the way that memories are formed, [through emotional connection], and so particularly things that are associated with an emotional charge, you’re going to be much more likely to remember them. That is crucial.
AM: What solutions are out there that you wish journalists would report on?
NV: One of the responsibilities of journalists is if you’re going to be doing a story on a scientific subject, whether it is on the COVID pandemic or the opioid epidemic, highlighting that science gives us extraordinary solutions. I do think that is a message that ideally should be conveyed.
So if you say, for example, that stigma is harmful, then it actually even strengthens your article if you then can provide some solutions about what works in order to change the stigma. For example, in terms of what changes stigma, and how do you change a culture of stigma, we know that there are some basic rules in terms of how you get rid of stigma. One of them is to have people experience a population that’s been stigmatized. So in the media, the portrayal of people that have an addiction in ways that are not just living on the streets with a violent streak, but instead, conveying their unique challenges on their generosity and their tenderness. I mean, to convey that element is one of the strategies that help to recognize one another.
We’re facing all of the racial discrimination as a country and exploring what works best in order to get rid of the racism that we’ve seen emerge in in really horrible ways. There are all of these training courses for people, but then you find out through study and research that the training courses don’t have long lasting effects. But immersing people that are the subject of discrimination into your everyday life in ways that you can actually recognize yourself in them, that you can empathize is probably one of the best ways of ending racism. And in addiction and in stigma around addiction, that’s actually the same.
AM: What work is NIDA doing in this space around stigma or around communications in general? What work are you all doing currently in that space?
NV: Oh, we’re doing a lot of work. We are not taking just one approach. One of the components is the academic approach about what are the interventions that have been shown to be better and to produce longer, longer lasting changes in stigma? There’s work in terms of do these training courses work and how do you generate opportunities to see others in similar environments?
But I also think it is important to reach out to the patients themselves who are being stigmatized or the families. We can ask them to come up with what they think would work, what are the messages that can reduce stigma? What is important for them to be addressed? So that is not just coming from all the academics living in this theoretical world, but that we have the information permeating for those that are struggling with it.
We work on multiple levels with individuals with substance use disorder. We’re also involved with justice settings, where it’s estimated that at least half of the people that are in jail or in prisons are there because of a problem with drugs, and in many instances, they are not given any access to treatment, and, again, they sometimes end up there because of stigmatizing. So we’re partnering with them to create models of care that actually take a different approach and show that it actually leads to better outcomes. There’s not one solution that’s going to address all of the issues of stigma, but we’re working on multiple levels.