Good afternoon, everybody. Welcome to today's AOAAM webinar on drugs, stigma, and health by Dr. Robin Polini. My name is Julie Kmic, and I'll be your moderator for this session. This is the third of a six-hour webinar series on hot topics in the treatment of opioid use disorder and stimulant use disorders. I'd like to introduce Dr. Robin Polini, who is a substance abuse and infectious disease epidemiologist whose research focuses on mitigating the adverse impacts of injection drug use. These include overdose, HIV, viral hepatitis, and serious injection-related bacterial infections like endocarditis. She uses innovative mixed-method study designs to examine how individual and structural-level factors influence drug-related morbidity and mortality, as well as health service access and utilization among people who inject drugs. Dr. Polini has been a principal investigator of several grants funded by the National Institute on Drug Abuse. So I'd like to turn over the webinar today to Dr. Polini. Welcome. Thank you very much. I appreciate it. Let me share my screen. There we go. And are you seeing the right one? I'm not seeing it yet. No, you're not. Okay. Let me see. Here we go. How's that? Yes, it's up. Okay, great. Thank you. So I appreciate the opportunity to talk to you today about drug stigma and health. And I will start by noting that I have no conflicts of interest to declare. Here's an overview of what I'm going to be talking about today. I'm going to talk to you a little bit about the different kinds of stigma, and then stigma's impact on access to evidence-based services for people who use drugs. And then I think we don't usually have an opportunity to hear people who use drugs in their own words talk about how stigma affects them when it comes to healthcare utilization and their experiences in healthcare settings. So I'll be using some quotes from interviews I've done with people who inject drugs there, and then I'll talk about next steps. So I think we all have an idea of what's — oh, sorry. I think we all have some idea of what stigma is, and I've put some definitions here. In the case of people who use drugs, stigma's tied up in the legal status of the drugs that they use, and also our society's purposeful framing of drug use as a moral failure. It's important to note that the stigma around drug use is socially constructed. There's nothing inherently bad about using drugs, and people have been using mind-altering substances for hundreds or even thousands of years. The good news is that because these stigmas are socially constructed, we have the opportunity as a society to deconstruct them as well, and then undo the harms associated with them. When we think about how stigma impacts the health of people who use drugs, it's important to note that there are actually several different kinds of stigma. There's stigma from individuals, so this is when someone perpetuates a negative stereotype about other individuals, calling a person who uses drugs a junkie or suggesting that they're inherently dangerous is an example of this kind of stigma. There's institutionalized stigma, and this is when stigmatizing assumptions and stereotypes are translated into public policy, practice, and funding decisions, and I'll give you some examples of that. There's self-stigma or internalized stigma, and this is when individuals who are part of a stigmatized group adopt negative stereotypes and assumptions about themselves. So a person who uses drugs viewing themselves as bad or undeserving of services or respect is an example of self or internalized stigma. And then there's stigma through association, so when negative stereotypes or assumptions are applied to someone who isn't part of the stigmatized group but associates with them in some way, so family members of people who use drugs or have HIV or have a history of incarceration might experience stigma through their association with that person. And there's growing research evidence that stigma around drug use manifests in a number of very negative ways. Specifically, the research shows that drug addiction is more stigmatized than mental illness. Others fear drug users and desire social distance from them. Drug users are viewed as unworthy of assistance, and public policies to assist them are often opposed. Drug users or people who use drugs report that drug-related discrimination affects them more than discrimination related to race, sex, sexual orientation, poverty, incarceration, or mental illness, and stigma is structurally reinforced by the laws that we have that criminalize drug use and permit discrimination. And unfortunately, all of these manifestations of stigma can influence the availability and uptake of healthcare services by people who use drugs. In addition, people who use drugs may be affected not just by stigma related to their drug use, but other stigmatized identities. Being homeless, engaging in transactional sex, having HIV or other infections transmitted through drug use or sex, gender or other demographic factors like race or ethnicity, and not listed here, but a history of incarceration. All of these can work in synergy to amplify the stigma that's experienced by these individuals. So, how does stigma affect access, utilization, and quality of the health services we have for people who use drugs? One example is in the area of treatment for substance use disorders. So, in 2020, 40 million Americans had a substance use disorder, almost half of those involved illicit drugs. And while we have evidence-based treatments for substance use disorder, for example, medications like methadone or buprenorphine for opioid use disorder, only 6.5% of those 40 million Americans reported getting treatment for their substance use disorder in the past year. The reasons for not receiving treatment are shown here in this graph. And you'll note that two of them relate to stigma. 12% said that they didn't get treatment because it might cause others to have a negative opinion of them. And 7% said they didn't go to treatment because they didn't want others to find out. And these are stigmas that are reinforced at the highest levels of our government. So, on a trip to my state of West Virginia, which arguably has the worst drug problem in the country, Tom Price, who at the time was the head of HHS, said this about medication-assisted treatments for opioid use disorder. If we're just substituting one opioid for another, we're not moving the dial much. Folks need to be cured so they can be productive members of society and realize their dreams. This is a statement that stigmatizes people on these medications who are working hard to manage their substance use disorder. And it also suggests that people on these medications are not productive members of society, and these attitudes have real policy impact. I think it's worth noting that here in West Virginia, again, even though we have arguably the worst opioid problem in the country, we've had a moratorium on new methadone programs since 2007, which severely restricts access to this evidence-based therapy for our folks here in the state. Similarly, we know that expanding syringe access for people who inject drugs reduces syringe sharing, which transmits bloodborne infections like HIV and viral hepatitis, and that syringe services programs are very effective in doing this, yet huge geographic areas of the United States remain unserved by these programs, which are shown here by county in orange. This is primarily because there are laws in many states and in many counties and municipalities that prohibit these programs. And where they are legal, stigma or limited resources can keep the programs from opening or force the closure of operating programs. In many cases, it's our elected officials who support these restrictions and closures. This is the mayor of Charleston, West Virginia, talking about the head of the county health department shortly before the syringe services program there was forced to close in 2018. Since that closure, we've had two injection-related HIV outbreaks in our state, including in Charleston. And in 2021, the state legislature passed the most restrictive syringe services bill in the country. The Charleston City Council has also passed an ordinance even more restrictive than the state law with criminal penalties for syringe distribution. Again, even though this is an evidence-based public health intervention. The number of people dying from overdose has increased to more than 100,000 annually. And we know that the opioid antagonist naloxone is effective in reversing opioid overdoses. Yet even some first responders are unwilling to carry it. This is a quote from a sheriff in Ohio who refused to allow his officers to carry this medication, saying, I'm not the one that decides if people live or die. They decide that when they stick the needle in their arm. So these are all examples of how drug-related stigma can influence access to evidence-based health services for people who use drugs. Because of this stigma, we rarely hear from people who use drugs about how they experience stigma and how this influences their utilization and quality of care. I don't think we can really understand drug-related stigma and its impact without listening to the voices of people who use drugs. So in the next part of the presentation, I'm going to use illustrative quotes from interviews my team and I have done with people who inject drugs in different parts of the country. And this shows the locations where these studies took place. There's a couple on syringe access. And this is syringe services, syringe access either through syringe services programs or through pharmacies where the law allows. A couple on current pharmacy-based naloxone distribution. And then one in West Virginia where we interviewed patients being treated for injection-related endocarditis. All of these studies included in-depth, qualitative interviews with people who inject drugs. And in the interest of time, I'm not going to give specifics on the study methods, but I'm happy to answer questions about them either at the end of this presentation. I think we'll have time next week. And I'll be presenting excerpts that address the following areas. Stigma experience in different settings. This again includes pharmacies, but also emergency departments and hospitals. Stigma that contributes to delayed care, delayed seeking of care. Stigma that contributes to the avoidance of care altogether. And then stigma that relates to discontinued care. I'll also note that in some of these slides, I'm using names. Those are pseudonyms, and it's just because I pulled those from published papers that use those pseudonyms. And all of the things that I'm talking about today have been published, and I'm giving you the citations in the slides. So you're very welcome to look up some of these things if they interest you. So depending on the state or the specific community, pharmacies can provide a convenient outlet for sterile syringes, naloxone, and other services. But for people who inject drugs, they frequently experience stigmatizing attitudes at pharmacies, which limits our ability to use these sites as points of care. So as this participant says, when they know that you're an addict and you're there for a needle, because you're a heroin addict, they're just nasty. I have not gone back to that pharmacy ever since, because ever since I bought needles that day, the old man that's there is a wicked jerk. I'm from New England, so I appreciate the terminology here. He's a wicked jerk. He was wicked rude to me and then gave me a hard time about my prescriptions afterwards. This participant talks about stigma being a barrier, not because of how it affects his reputation, but how it might affect the reputation of his family. So he says, I don't want the stigma attached to me because my family and my family name is important to me. Although my mom's dead and gone, a lot of people in Fresno knew her and, you know, they have great respect for her and that respect is passed on to me. So I have a reputation to live up to. You know, I don't want that passed on. I don't want anybody thinking or knowing, I should say, that I'm an IV drug user. So I can't go into drug stores and buy syringes. I have to go to the syringe exchange, which might seem like an easy trade off. But for this particular gentleman, he was wheelchair bound. And so that meant instead of going to a pharmacy in his neighborhood to get syringes, he had to find a way to get across town to the syringe services program, which runs only two hours a week in his wheelchair to get supplies. That's difficult enough. But then you remember that in Fresno in the summer, it often exceeds 100, 110 degrees, and this can be quite a challenge. So it would be much easier to be able to get syringes at your local pharmacy when you need them. For any severe health issue, the emergency department is the gateway to care, and it's very common to hear study participants talk about the difficulties they have in that setting. This participant from my home state of New Hampshire described it as being thrown into the attic bucket, being treated differently from other patients because of their substance use. Similarly, this participant from California said in the emergency room, you're a nobody, you're just on the back burner to them. People get abscesses and stuff like that, and they go to the hospital. And once the doctors realize that you're a drug user, they sit you on the backside and they'll take that person in front of you. You get treated a lot differently. Experience with stigma in health care settings, particularly in the emergency department and hospital, often leads to people who use drugs to delay care for serious medical issues. So as this person said, people who inject drugs don't want to go and have someone look down their nose and tell them what a piece of crap you are. You already know most people using a needle know they've hit rock bottom. They know that they're down there pretty far. A lot of people just won't go. They'd literally rather die than face that. It's really sad it happens. I get it. I never would have understood. I might just go to the doctor. That's stupid. But I get it now. I understand. And this is something that I've heard again and again. People who use drugs delaying care because of their fear of being treated badly. And that allows their illness to progress so that it's more complicated to treat once they do present. And their outcomes are worse than if they had presented earlier in the course of their illness. Also related to delayed care, John from our endocarditis study says this endocarditis symptoms were hard because I would go to work and I'd have no energy. I barely had an appetite. Then there was a point where I just couldn't get up and go to work like I would lay in bed. It was like I had the flu, but it wasn't getting better. It was like somebody had a knife in my side, stabbing me. Then because I was embarrassed and I didn't want to go to the hospital, I laid there for months just trying to fight it off. And as he says, that embarrassment was the only reason that he delayed getting care for his endocarditis. And in the case of endocarditis, delaying that presentation to the hospital can allow your infection to progress. And a patient could end up needing a valve replacement instead of being able to just be treated with IV antibiotics. And then some patients avoid care altogether with disastrous results. Susan says the abscesses, I know people who have died from abscesses because they didn't want to go to the hospital because they were ashamed of being a junkie. Personally, I'd rather go to the hospital and deal with the shame than die. But some people aren't OK with that. So over 20 years of doing these studies, I've thought a lot about what all these mean. All this means for health care services, for people who use drugs. And I keep coming back, especially lately, to this. This is a picture from the movie Field of Dreams, which you probably know. It stars Kevin Costner as an Iowa farmer, and he keeps hearing the ghosts of White Sox player Shoeless Joe Jackson whispering to him, if you build it, he will come. Meaning if he builds a ballpark in his cornfield, the ghosts of deceased Major League players, including his father, will return to play on his field. And so he builds it and they come. But it doesn't really work this way when it comes to providing health services for people who use drugs. We can provide the best possible medical treatments and public health services for substance use disorders and HIV prevention and overdose response. But if we don't deliver them in a way that's acceptable to people who use drugs and incorporates their input into how we provide those services, then we're going to fail. They might not come for services or they might come, but they might not stay long enough to heal. So this graph is from a national study of discharges against medical advice for people hospitalized with infective endocarditis. The blue line here is people with endocarditis unrelated to injection drug use. And then the orange line here is those with injection-related endocarditis. And you can see that the percentage of discharges AMA is much higher among the injection drug using population than those who have endocarditis unrelated to injection drug use. Leaving AMA is a problem because these patients are generally eventually readmitted with more severe disease, which is bad news for health outcomes. And any hospital administrator will tell you it's also bad for healthcare costs. So we have this exact problem with endocarditis and other injection-related bacterial infections like osteomyelitis at our hospital here at West Virginia University. And so we did a small study in which we conducted qualitative interviews at bedside with these patients to ask about their hospitalization experience, including past admissions when they left AMA and try to figure out why this was happening and what we could do to stop it. And so we did 20 interviews and these were the themes across the interviews. Inadequate pain and withdrawal management, boredom and confinement. You know about these patients, you know they're on IV antibiotics for six weeks. And if they're confined to their room or their floor, they get pretty bored. Isolation from family and other social supports. In our case, we have patients coming from all over the state and so they're often separated from their families. But the one overarching theme that we heard from almost everybody was that they had had negative interactions with hospital staff that they perceived as stigmatizing and either indirectly or directly influenced their decision to leave the hospital before their treatment was complete. Here's an example of how this experience with stigma was experienced in this study. Dakota says, I just wanted to get the hell out of here because they had made me feel like an outcast. And she's talking about she had just been subjected to a search for drugs in her room, although they hadn't found any. They made me feel like I had something to hide when I didn't. And you know, I just basically told the nurse, I was like, you know, I think what you're doing is wrong. You're basically chasing people off that don't need to be chased off that still need antibiotics, that still need to be here. And you're running me off because you felt like you seen something that you didn't see. And she brought in a urine cup and she told me that she wanted me to pee in the urine cup just to make sure I hadn't shoved it inside me. And I was like, this is overkill. Give me my release forms, I'll just sign them. And then she continues. So, you know, I just left. And the first thing I did was I went and got high that night as soon as I left. And it wasn't fair to the doctors that took their time out to make me better. It wasn't fair to the nurses that did believe in me. Because of this one nurse, you know, I just felt like I wasn't good enough. And so I went out and I got high. So what do we do about stigma and its effects on care for people who use drugs? I do a lot of work in harm reduction and the foundation of harm reduction is meeting people who use drugs where they're at and working from there. And several years ago, I was at a meeting where someone from the National Harm Reduction Coalition spoke and he said this, rather than getting angry at people who use drugs because they don't do what we want them to, let's try to understand why they do what they do and work with that. And so I think the endocarditis study I just talked about is a perfect example of that. And that's exactly what we did. So after we did this study, we took the information that we learned, which was actually very inexpensive to do. My time was already paid for. We reimbursed those study participants and we did a transcription. And with their input, we developed a dedicated unit in our hospital for patients with injection-related infections that require long-term antibiotics. It has, I can't remember, it has 20 or 26 beds, something like that. And it has all of these things. It has a dedicated nursing staff. So nursing staff that wanna be in that unit, not just that they've been assigned to that floor. Improved consultation for pain and withdrawal management. One of the things we found in our study is that it was taking a median of five days for these patients to get a pain consult and that was motivating them to leave. So much better pain and withdrawal management. For those that want it, there's a full-time recovery coach there and there's 12-step programming for people who wanna participate in that. They can also get buprenorphine with Suboxone started while they're in the unit. They get to go outside every day, weather permitting. This was a huge issue for people, particularly a lot of our participants who spend a lot of time outside on the daily. West Virginia is an outdoor kind of place. And they really wanted to get outside. So they're able to have supervised time outside or there's a gym on campus that can do that. They have group meals outside of the unit. And then they have organized activities just to pass the time. They have movies, they have art activities, music therapy, all things designed to keep them engaged and willing to stay until their treatment is complete. We haven't done a formal assessment yet, but by all accounts, the patients are much happier in completing their treatment at higher rates. So I think this is one great example of how we can listen to patients and make structural changes based on their input that improves their care and their health outcomes. The second thing I wanna talk about is the cultivation of empathy, which is defined as the ability to understand and communicate with others. And to understand and share the feelings of another person. I've spent a lot of time thinking about why different people treat people who use drugs in different ways. And in the midst of writing this editorial for the American Journal of Public Health about a very politicized situation around harm reduction here in West Virginia, I came across an article in the New York Times, and the quote is here. It wasn't even about drugs. It was more of a related political issue. But the columnist Charles Blow said, one doesn't have to operate with great malice to do great harm. The absence of the empathy and understanding are sufficient. And that really struck me because I don't think that stigmatizing people who use drugs come from malice, but it does come from a lack of empathy and understanding. So I started pondering this question of how can we cultivate empathy towards people who use drugs? And so I was hiring for another study and I ended up hiring a research assistant who in his undergrad work had done some research on empathy interventions, I think in the context of working with police, but he knew a lot more about this topic than I did at the time. He probably still does. He's working on his PhD now. But we did a small pilot study that tested an empathy intervention in which we asked the study participants to describe a stranger on a train who they start chatting with. And in the course of that discussion, the stranger discloses that they inject drugs. And then they described the challenges related to their drug use, including being treated poorly in a variety of employment, social and healthcare settings. And then we asked the study participants to recall times that they had similar feelings to what the stranger described and the impact it might have on that person if they were treated differently. So that was the empathy intervention. And then we had a second arm that was a learning arm where we showed participants a publicly available informational video about stigma. And then we had arm three, which is an attention control where we just showed them a National Geographic video of a similar timeframe. And then we administered a social distance scale to all of the participants that assess their comfort and safety and all of the participants that assess their comfort level in a variety of scenarios with people who inject drugs with zero on the scale, being definitely willing to engage with that person and five being definitely unwilling. So a lower score represents less desire for social distance or for our study, more desirable outcome. And what we found was that first, the people who were in the empathy arm, which is this iron one here, had significantly lower social distance scores than the control group, indicating that our intervention had some significant impact. And then second, those who did the learning informational arm were not statistically different from the control arm, although they trended in that direction. And to note, this arm two is what we usually do to address stigma. We usually do educational interventions. So this pilot serves as preliminary data that suggests we really can teach empathy and that this approach as we refine it might prove to even be superior to the learning interventions alone, which as I said, is currently what we do for stigma and definitely more effective than doing nothing. So these are sort of big picture approaches to addressing stigma, but what can we do now? What can you do today to start addressing this in the settings in which you live and work? So one thing I can tell you is that words matter. Stigmatizing language around drug use matters. So one thing we can all do is adopt language that's less stigmatizing. One thing is using person first language. So there are words that I've used in this presentation today like addict and junkie that are stigmatizing and not appropriate in general conversation, especially not appropriate in healthcare settings. Instead, we should be using person first language, which you might've also seen me modeling in this presentation, which is person who uses drugs, person with a substance use disorder. And you can apply this in other areas as well. Instead of calling someone diabetic, you can say a person with diabetes. We put the person first and the medical issue or disorder second. We should also understand the difference between different terms. You will see the term substance abuse used, but not all substance use is abuse. And the definition of substance dependence, which is physical dependence, can be exclusive of abuse. Abuse and dependence are both substance use disorders. So getting the language around this straight and not always defaulting to abuse, which may not be appropriate or accurate is something that we can all work on in talking about substance use and substance use disorder. Another example is using words like clean and dirty. And I know that this is language that's used in 12-step programs, but clean, someone who's clean, who has not been using implies that if the person is not clean and they're using, that they're dirty. And that's stigmatizing language. So instead of saying someone is clean, we can say someone is in recovery or someone is not using. The word dirty has similar stigmatizing connotation. We say a dirty urine, that's a positive urine. The urine is not dirty, it's positive for drugs. And so trying to rid our conversations of this kind of language can actually do a lot to improve stigma and stigmatizing language and behavior. I've put a couple of resources here. The first is Changing the Narrative, which is a project out of Northeastern University that has some really good information. It's mostly geared towards reporters and researchers, but it's appropriate for everyone. And then there's the ADictionary, which already the name is a little bit problematic, but if you go to this website, it has a whole list of terms that are used in the context of substance use. And it will point out the ones that have stigmatizing connotations and offer different language alternatives. So highly recommend taking a look at those if you're interested. And the research shows us that the terms we use actually have real measurable implications. So this is a study that tested whether referring to an individual as a substance abuser versus a person having a substance use disorder evoked different judgments about treatment need, punishment, social threat, and a couple of other categories, which you will see here. And what they found, this was actually a study that they administered to medical students and residents. And what they found was that within each of these areas, study participants, sorry, for each of these areas, study participants differentiated between the two depending on what term was used. So for example, participants endorsed treatment for people with substance use disorder more often than they endorsed it for people who were described as being substance abusers. Similarly, there was many more people endorsed punishment for substance abusers versus people with substance use disorder. And then another one here, attributing blame. Many more people or a higher proportion of the participants felt that it was appropriate to attribute blame for substance use to substance abusers versus those with substance use disorder. So the words you use matters. It matters in the clinical settings you work in every day. And it's really something to think about when you think about the language that you use and modeling appropriate language for the people around you. And that's something that I tend to do. A lot of times I tend not to call people out on the language they're using, but I'll reflect back to them with more appropriate language. This is another study that was done about how the words we use in clinical settings matters. This time it was in medical records. So this is not about people with substance use disorder. This is about people with sickle cell disease, but the idea is the same. So the study used vignettes of hypothetical patients, sickle cell patients, to determine whether the use of stigmatizing language in medical records had an impact on the attitudes and clinical decision-making of the participants. And I put an example here of the neutral language versus the stigmatizing language. And you can see that they are different, but not necessarily obviously so. The outcomes they used were the PASS score, which is here, which is positive attitudes towards sickle cell patient scale, and then a pain management score here. So there were two different outcomes. And what this shows is that study participants who were presented with the neutral language, which is this one up top, had significantly more positive attitudes towards these patients in the vignette, and they prescribed more aggressive pain management than those who were presented with this more stigmatizing vignette. So thinking carefully about the language that we use both in conversation and even in patient medical records can have an impact on attitudes towards the people we care for and the types of care that we provide. And that's something that we can all be doing right now as we work to change the more systems-level factors that I talked about and work on these interventions, including empathy interventions designed to change individual attitudes that influence care. So we're running a little ahead of time, but I just want to stop, end with this quote from one of my endocarditis study participants, because I think it demonstrates that we really do have great people working in our healthcare system, and that treating people who use drugs with respect and dignity and empathy can really have a positive impact on how they view themselves and their ability and willingness to make positive change in their lives. So Sharon said, you know, if I don't feel like I matter, like if you can't make me feel like I matter, then when I get out of here, I'm going to go straight back to shooting dope. And like, that's the one thing that was amazing here in the hospital. All of these people came in and made me feel like it was important for me to not do dope again. And it made me feel like I mattered. It made me feel like what I went through was something so traumatic, you know, so pressing that I got a second chance at life. So maybe I shouldn't do dope again. Thank you very much for your attention. I'm very happy to take questions, and you can also contact me at my email, which is here. Thanks. Thank you so much for that presentation. I'm going to be looking in the chat and seeing if we have any questions. We did have one person who commented that in terms of talking about urines, he uses expected or unexpected for urine drug screen results versus, you know, the clean and dirty. I do have a question about that study with the infusion unit. Do you know, as far as the cost and the projected outcome, money saved by having that? And yeah, that's a great question. So my understand, there hasn't been a cost analysis done of it. My understanding is that the only additional cost for that unit is the recovery coach, because we basically took all these patients who were scattered on different floors and put them in this one place. So the nursing staff is the same, the social work is the same, all that was the same except for the recovery coach. I cannot tell you the change in cost. What I can tell you is when I was asked to do this study, I believe our hospital was losing something like $4 million a year in unreimbursed costs under Medicaid. And there's actually a study that was done in Charleston at the Charleston Area Medical Center. There's a couple that have actually broken down the costs of endocarditis patients. And I think one of them has to do with AMA. I will say that we had patients on our floors who had gone AMA, including one of the patients in the study, five, six, seven times. And we had patients who had had multiple valve replacements. And so to the extent that you can get people through their course of treatment and prevent that from happening and get them matched up with Suboxone or whatever, I'm sure there are cost savings, but we have not done that analysis. I'd be happy to track down that on Charleston paper. Okay, and as far as like the completion rate on that unit, so do you know how many people, like what was your percentage versus people who had been admitted to the general hospital prior? Yeah, someone else is doing that analysis. I will tell you that we tried using our EMR to look at folks who had had injection-related endocarditis and then look at the AMA rates. And one of the problems is that their substance use disorder is not uniformly entered during the same visit as their endocarditis. And so there are a lot of studies that have looked at people with injection-related endocarditis by looking for endocarditis and substance use disorder code at the same visit. And what we're finding is that that really undercounts the number of cases that are related to injection drug use. So we're still kind of trying to tease that out. And I'd love to talk to people who have maybe done that already and found a better way. One thing we have to do is change how we keep records for these patients. Yeah, it's so hard looking back at charts just because of all the different ways that you can chart and then the amount of time it takes as a clinician to chart things. We have another comment about language, another terminology, consistent versus inconsistent. And we have one comment here, language mindfulness and change is necessary but not sufficient, do you agree? Yes, I absolutely agree. And that's why I tried to frame it as something we can be doing while we're working on these other things. But I did want to present that research that it actually does matter, but no, I don't think it's sufficient. Again, you can use language that's not stigmatizing, but again, if you don't structure your programs for people who use drugs in a way that they're willing to use them, we won't be making the progress that we could be making. The next part of this one is, for example, with medical records, hospitals can develop policy to require that substance use disorder and person-centered language can be used or be used in the medical record. Has this approach been considered? I am not aware that people have done that. I know that it's something we are working on here, at least for the record keeping part. I also know that a lot of folks are working on this with a medical record for gender identity, for example, and making sure that we use appropriate language and pronouns in medical records. So I think there's probably several areas that we could be thinking about doing this better. And again, I would love to hear examples if people know of them of people working on this, but I do think that that one study makes clear that the way we enter information into the medical record matters, and that might not be so obvious. Right, I mean, looking at people's history and looking at things that have been charted about them, sometimes people think that they're being nice, I guess, when they're saying, you know, kind of making a judgment, even though it's a positive judgment when they have, this is a pleasant 67-year-old woman, you know, and I wonder to myself, is that really necessary to say that she's pleasant? Right, but yeah, you do see those things in the chart, you know, some of those things, but also the negative judgments can be right. If you call someone pleasant, you might also call someone unpleasant. Yeah. We have one comment and question here. Thank you for this important presentation. I commend what you're doing. Question, there are practical reasons to be uncomfortable around a person who uses drugs. We can get rid of stigma, but we are left with the issue of unacceptable behaviors exhibited by persons craving or seeking money for drugs. I say this as a mother of a person who uses drugs. So in the medical setting, I think one of the things that we've talked about is one of the things that came up frequently is room searches, right? Why are people searching my room? Why do people assume that I am using drugs because I have people coming and going? And so thinking about when those happen, right, how that happens and what the implications of that might be for people leaving AMA, I think it's important to take all those things into consideration. A better approach might be if someone has drugs in their room, there might be a reason for it, right? You might be having someone bring drugs in because your pain is not adequately controlled. And so I think rather than having the knee-jerk reaction if we can't have drugs in rooms, thinking about the pros and cons of a search versus addressing why that happens, I just think we need a more thoughtful approach to that. And I'll tell you in the infusion unit that we have here, it's handled a lot differently. Like if drugs are found, we have a conversation about why that's happening, right? What do we need to do to create a situation in which you don't need to do that? So I get it. I also think that we need to think about treating patients more consistently and not assuming that because someone uses drugs they're gonna be problematic. And I only say this because these are things that I saw during the course of this study, sitting with patients and spending time with them. I got to see interactions with nurses and security and those things. And it was really quite eye-opening for me and a lot of my colleagues as well. I hope that, I'm not sure if that completely answers the question. I think it was somewhat of a comment too, in terms of sometimes people do feel that there are fears that might make other people uncomfortable. Yeah. I mean, I think start in the same place as every patient, right? I'm not a clinician, so I don't wanna presume to know how to do this, but I think what I hear from patients is that there are perceptions that things go fine and then someone sees in their record that they are a substance user and then they feel a lot of suspicion. So maybe meeting each patient at the same place and then navigating based on behavior, but not making assumptions about what might happen, right? And then thinking about why things are happening, meeting them where they're at. But again, I'm not a clinician and I know this is extremely difficult in the context of treating patients. So I don't wanna minimize it at all. I'm just wondering too on your unit, what did you do about smoking? There's a huge comorbidity with tobacco use and people who are using opioids. So did you allow people to go outside to smoke or were they smoking when they went outside for their- They're allowed to go outside. I don't know if they're allowed to smoke when they're outside, but I will tell you that smoking is a big issue that I wasn't aware of until I did this study. And I didn't talk about it here, but a lot of people are kicking nicotine at the same time that they're getting off of opioids, for example, and their nicotine dependence is not being well-treated. And so we had people going AMA all the time because they just wanted to go out and have a cigarette. I had one person who told me they went into the emergency room after leaving AMA a few times and they were about to be hospitalized. And they just said, I want one more cigarette. And the emergency room said, well, you'll have to check yourself out. So they checked themselves out of the emergency department, went and had a cigarette, and then came back in and did the whole thing again. So being cognizant of nicotine use and what people are experiencing, I think, is something that I don't think we were doing particularly well. Yeah, it's a really hard subject, especially because I know a lot of campuses are tobacco-free as far as the hospital. You can't smoke within such a number of feet within the doors and all this other stuff. Yeah. We have one question here. It says, what is the plan for linkage to care from the infusion unit when the patient is discharged? Have they planned any specific interventions to assure that patients are more likely to stay in care after discharge? Thanks, great presentation. Yeah, so my understanding is that we do have a social worker who is assigned there and that social worker is working with folks to get them into treatment. Sometimes they go over to a residential treatment center that we have, or they could be released on Suboxone if they want it. We have very limited methadone here, so that's not really an option for a lot of folks. One of the problems we have, as I mentioned, is that we are discharging people all over the state. And so sometimes finding them a physician who can write their scripts more locally is pretty challenging. But yeah, that has been a real focus because what we were finding is that we were not doing the best job of that before we had everyone contained in that one unit. And what people told me was, I'm really bored. I actually wanna start doing treatment, but I can't leave the floor to go to the group that's in the other building unless someone takes me. And so we had people sitting there with time on their hands, ready to engage in recovery and we weren't giving them anything. So I think one thing the infusion unit does is it provides a structure in which if that's what they wanna do, they have all the resources there to do it before they even get discharged. One of the things you've mentioned too is that people often don't have visitors because they're from far away in the state. How did COVID affect this? Because at one point, I know that I'm assuming that your hospital didn't allow visitors just like other hospitals. Yeah, I think that it was the same, like they're treated just like any hospital patient. So whatever the policy was for other patients, that was a policy for them as well. Did you see increased AMAs during that time too because of that social isolation? I actually don't know. Yeah, I actually don't know. Someone else is doing the analysis for the unit, so I can't really, yeah. Okay. We have one comment, very important and wonderful talk. And then another comment here says, unfortunately, there's also stigma when you are in treatment. I'm a physician at an opioid treatment program clinic. It's a challenge to keep people in treatment. I mean, and this is one of the issues that folks have on buprenorphine is that a lot of the 12-step groups do not look fondly upon medication-assisted treatment. And so, yeah, I think that's absolutely true. And the quote that I put up from Tom Price is a perfect example of people, even at the highest levels, not understanding that that is evidence-based treatment for substance use disorder. I'm a firm believer in a buffet of options and we should be offering every option available for people to decide what's the best option for them and supporting them in that. And then another comment, need to begin treating people as humans, not unlike somebody with diabetes who hides candy bars. We automatically don't do room searches on them. Yes, thank you. I say that too. I reimburse my participants for their time and I like to reimburse them in cash because there's a lot of things that you can't buy with a gift card and people always call me out on that. And they say, well, do you police what your patients with diabetes do with their gift cards when they're in a study or your patients with heart disease? We're setting a different standard for people who use substances and that's stigmatizing. Yeah, I definitely see that kind of thing too, just in terms of, shoot, I just lost my thought, but it'll come back to me. Let me go on to one question here. Somebody had mentioned, I understand pleasant versus unpleasant, but how about stating someone is cooperative versus non-cooperative? On admission, personality can change drastically during treatment. Doesn't that give the clinician a baseline? I think there are probably different words and I think it was in that slide that I showed, but there are different words we can use than uncooperative. And so just thinking, and is it, again, I'm not a clinician, but is it that they're uncooperative or is there a reason that that particular therapy is not working for them? Whenever I talk to people who inject drugs about something they were non-compliant with, there's usually a really good reason why they were non-compliant. And so it's like, was that them being non-compliant or were you not delivering that in a way that works for them? So, yeah, I mean, I think different, thinking about different kinds of language, but also thinking about the why of the non-compliance. This person is not taking their medication as indicated because they reported that yada, yada, yada. Right. Yeah, you can just, you don't have to make kind of the judgment of compliance or non-compliance, just they take their medicine five out of seven days a week, things like that. So just like, that's how I try to do things, like just describe the behavior or what they're telling me. When asked why they took their medication five out of seven days, the patient reported that. That's a pretty neutral language. Yeah. Let's see. I frequently encounter secondary stigma as a certified SUD counselor. I am not in recovery and just have found my niche, but people assume that I'm in recovery. My BA is in psychology. Also, I believe that employees have a difficult time addressing their substance use disorder and HR departments can do more. You'll notice that I use the word recovery coach and not peer recovery coach. I hate the term peer recovery coach because it outs the person as a person with a substance use disorder every time you say the name. And then when you put it on your resume, you're outed forever, right? It should be your choice whether to disclose that or not. So I'm not a fan of the term peer recovery coach. Lots of people can be peer recovery coaches without having that experience. I also experienced some secondary stigma from being a person who researches this, right? And so I think that's really true. That said, I feel like it's an honor and a privilege to do this work. And so I try not to worry too much about it, but I completely agree. Yeah, and I think we should all advocate for dropping the peer from recovery coach. People often assume that I am also a person who at one point in my life used drugs or that I am in recovery, and that's not the case. That actually leads to one question here. It was, have you studied stigma towards healthcare providers who treat persons with substance use disorder? No, but I would like to. And then this one is more of a comment than a question. Having the medical system invest in persons using drugs translates into a growth in sense of self-worth. The system wants to save me, I'm worth it. I believe that has a positive impact on motivation for recovery. Yeah, which is exactly why I used that last quote, that particular participant, the way that their providers treated them made a real difference in how they viewed themselves and how they contemplated recovery. And I think that's really important that stigma can have a negative effect, but empathy and investment can have a really positive effect. Looks like we're nearing our end for today. I want to bring up that if you have questions for Dr. Polanyi for our next session, which is next Wednesday at five o'clock, you can add questions to this discussion tab. If there's anything interesting that you think of or anything you want clarified or just anything related to stigma and health, the link is in the chat. So it's on the education page for AOA website and you'll go to a discussion tab there. So just wanted to say that. And then, so we have our next webinar next Wednesday and I'd like to thank the Opioid Response Network for being a partner with us and SAMHSA for funding this initiative. And thank you all for participating and thank you to Dr. Polanyi for this very important and wonderful presentation on stigma and drug use. And I hope to see you all next week. Thank you so much. I really appreciate it.

webinar

drug stigma

access to healthcare services

types of stigma

socially constructed

drug addiction

healthcare settings

person-first language

addressing stigma