Conversación sobre el consumo de sustancias: COVID-19, equidad racial y estigma

(En inglés)

Talking About Substance Use: COVID-19, Racial Equity, and Stigma

Steve Shuman: So with that, we're going to start. Let me introduce today's speaker, Matthew Stefanko. Matthew, take it away.

Matthew Stefanko: All right. Thanks, Steven. Really excited to be able to present to this group today. I think there's so much happening around this topic that there should be a really rich discussion and I welcome all of your questions, and hopefully, we'll get to as many of those as possible. To briefly introduce myself, my name is Matthew Stefanko. I lead Shatterproof's efforts around stigma reduction.

Shatterproof is a national nonprofit that is working to end the addiction crisis in the United States. We do this in three primary ways. The first is through improving treatment quality. We have efforts related to policymaking that we do at both the national and the state level. And we also have our treatment quality locator, which is in six states today and growing to 11 within the next year. That locator, which can be found on treatmentatlas.org, provides quality treatment information and a locator function for people who are looking to receive substance use disorder treatment in the United States.

Second is our work around ending stigma, which I'll get into today in much more detail. And finally, is all of our work around education and educating supporting families. We do this through a few mechanisms. First is our shatterproof.org website, which you can access a lot of really great information that can be used in your communities and with the people you partner with. As well as Just Five©, which is what we like to call our Addiction 101 training series, six lessons, five minutes apiece. And that is being used across many large companies, Fortune 500 companies, state governments and city governments, and many other areas across the country. And we're really excited about what that does to be able to and further empower people to understand addiction and what's happening.

So we're going to be talking about a lot today, and I hope that you take away from this session a few things. The first is how impactful stigma is. I think people often think about stigma as wrong and understand it's not the right thing to do. But they don't necessarily realize the ways that it drives the addiction crisis, so we'll talk about that. I also want to talk about factors that we saw that were incredibly successful in other social change movements and what that means and the implications of that for working on ending the stigma and discrimination that people with substance use disorder too often feel.

We'll talk about some of the interventions that we've implemented and how effective they've been and why they've been effective. And then finally, we're going to talk about how health equity and racial equity overlap and play with addiction stigma. And we'll get into a little bit of detail on how racism and addiction stigma work together in a way that creates sort of additive impact where it's not a 1+1=2 equation, but a 1+1=3 or 4. And we know that from the data and we'll talk about that today.

So just to get started, a few things to know about some terms we'll be talking about. I'll certainly be referencing the addiction crisis and the addiction epidemic in today's society. This has been rapidly increasing over the last 20 years. We'll get into some statistics about how it is increasing even more so today due to COVID-19, fentanyl, and many other factors.

We'll talk also about medications for opioid use disorder and opioid use disorder itself. Medications for opioid use disorder are one form of evidence-based gold standard treatment for opioid use disorder, and there are three FDA-approved types. Opioid use disorder is a particular pattern of problematic misuse of opioids, whether that be prescription opioids or non-prescription opioids like heroin or fentanyl.

We'll be talking about stigma, of course. That's one of the big topics today that we'll be discussing. And you can see the definition here of the way that society and others around people take a particular trait of someone, in this case substance use disorder or opioid use disorder, and use that as a way to sort of separate and discriminate and “other” a person to that one particular trait. And we'll also be talking about substance use disorder. While the opioid epidemic certainly gets a lot of attention – as it should – we also know that alcohol use, stimulant use, problematic alcohol use, and problematic stimulant use are on the rise. And so we'll be talking about that today, as well.

So first, I want to talk a little bit about how the COVID-19 pandemic has impacted the addiction crisis. Unfortunately or – fortunately prior to the pandemic, we were as sort of a society and a country making a lot of progress on the addiction crisis with numbers peaking in 2016 and 2017 and moderate declines year over year after that. Unfortunately, we're seeing a lot of factors that are coming into play that are certainly driving overdose deaths up. And there's still a lot of research happening to understand why that's the case.

There are some hypotheses and some guesses. Certainly, we know that substance use and problematic substance use is increasing due to mental distress that many are feeling, whether that be due to job loss or the impact of trauma and grief due to a loved one – losing a loved one, housing instability, food insecurity. All of which are certainly being – are certainly growing because of the pandemic.

And we also know that the drug supply is changing. We know that there are more impactful and harmful drugs – or more potent is probably the best word – drugs that are being distributed with drugs like fentanyl being laced or distributed in many other forms of drugs. And we suspect that that is driving overdose deaths, as well. You'll see here really a large increase from 2020 into 2021, and we're just starting to see in some ways the impact of the pandemic.

And while we are certainly still losing too many people from COVID-19, we are also at the same time losing many, many people every day due to drug overdoses and it represents one of the most important health crises that we need to work on today.

So there's a lot of implications of this, and we'll talk about this in some detail today, but it means thinking about what going back to normal actually means. It also means looking at how substance use intersects with so many other parts of the economy, of the way that people interact with the world, their own mental health and well-being. And as those things continue to evolve, it will likely have implications good and bad on people with substance use disorder or people who are in recovery, etc.

Also means that we need to really double down here. Unfortunately, the interventions that we implemented just a few years ago are not working as effectively as they need to be working. And so, new approaches and more effort need to be undertaken by people to really begin to see the debt that we think is necessary here.

So I already spent a little bit of time talking about how stigma fits into Shatterproof's plan. One question that we get asked quite a bit is ‘why stigma,’ right? There so many complicated facets of the addiction crisis today. You could work on prevention. You could distribute naloxone, which is a life-saving overdose reversal drug. You could think about other social supports or social determinants of health. Why stigma? And one of the reasons – really the main reason is that when we looked at – when Shatterproof looked at the key drivers of the epidemic, the things that were really fundamentally causing the addiction crisis, we saw how stigma affected or were the direct cause of the vast majority of those nine drivers, specifically these seven.

And there are certainly the obvious ones like shame and social isolation. That's almost entirely stigma, people feeling otherized and feeling they can't be a part of a community. But then there are others that people may not think of as stigma that have a really deep overlap and connection with stigma and discrimination; things like the lack of evidence-based treatment available, providers not thinking that it's appropriate to prescribe medications, or family members not being supportive due to the incorrect belief that taking something like methadone or buprenorphine is just trading one drug for another.

So given the importance of this, we had to take a really big look at whether or not addiction stigma was even something that could be addressed, or that there were interventions available or if it was just something that would eventually erode over a period of time. And so, one of the key ways that we tried to understand addiction stigma was looking at other stigmatized diseases and other social change movements that made a significant amount of progress over the last 30, 40, 50 years.

We looked at things like mental health and marriage equality, HIV/AIDS, and even cancer, which was a highly stigmatized disease just 30 or 40 years ago. Certainly cancer no longer carries the deep level of shame and stigma that it did in four or five decades ago, and that was due to a lot of intentional work by many actors. And so, we looked at a lot of publications. We looked at a lot of research. We tried to understand and break down what really made the difference in those social change movements with the goal of taking all the good, getting rid of all the bad, and seeing if we could expedite the progress towards ending the judgment and shame towards people with substance use disorder with the intention of saving many lives.

Throughout this work, we came across a lot of key concepts that I'll talk about today that I think are really important to think about. This is one of the big ones that I hope people here who are working sort of on the front lines or with people directly really think about when they think about creating interventions. I think when people think about stigma, they think about this first bucket. They think someone's family member or someone's pastor saying something judgmental about their substance use or their substance misuse, and that's certainly a problem.

We know that less than 20% of Americans want to associate with someone with a substance use disorder as a friend, colleague, or neighbor. So, this is a real issue in the United States. I don't want to downplay the importance of public stigma, but it's also really important to think about other forms of stigma when creating and crafting interventions.

Certainly structural stigma is a real problem that we see in many places. And this is really the sort of baked in discrimination – the bones of an institution that actually create ongoing discrimination and sort of negative outcomes for people with a substance use disorder. You can think about policies at health care facilities or drug screening or other sort of things that happen in employer settings that might make it harder for someone in recovery or with a substance use disorder to enter and have a more fulfilling and safe life.

And then, finally, there is self-stigma. And this is the one that I think gets forgotten so often. Really great organizations can do a lot to address public and structural stigma and they can strip that away. And then they're still left this wake of self-stigma and there's not enough effort taken to actually work on this. So self-stigma is what happens when someone is hearing all the negativity from the public and they are feeling the discrimination from the structures and they actually begin to internalize it. And so, they begin to believe the negative things that are being told about them. They begin to think that they maybe do resemble a junkie in a television show or the way that a family member is treating them.

And that shame can last very deeply and can be very deeply a part of who someone is. And if you just think about public and structural stigma and you leave self-stigma, you may not be able to see the type of progress that you hope to with the folks that you're serving.

This is another really important slide, and I know this is one of the key learning objectives for today's session. When we did our research, we came across a number of key success factors and I'll talk to a few of those today. And these were based on what we saw worked in other social change movements. Certainly not every successful social change movement had all six of these, but these were common thematic elements that we saw on all of the different social movements.

First, was that there was a well-funded central actor or set of coordinated actors. So the implication of this – what this means – we need to work together and we need to push forward together. That if you have a lot of separate initiatives and you're not talking the same talk and walking the same walk, you're not going to be able to make as much progress as if you are working sort of collectively.

Second, we found three key actions, and this is something we'll talk about later. And as you're thinking about programming, I would really think about these three. First is education. If people have myths or stereotypes about those with a substance use disorder, it makes it really hard to create social change. If you think that someone is going to have some sort of problematic behavior due to their substance use, it's hard to convince someone to change their language or change policy. So, that's always really critical.

Then we'll also talk a little bit about the way that we can change language and the way that language shapes attitudes and behaviors. Third is the types of education that you're doing is really important. If you want to focus on behavior change, we primarily advise people to think about contact-based strategies. And there's a wide variety of ways that you can implement this.

But at its core, it's really taking someone without the stigmatized condition – in this case, someone with a substance use disorder – and linking them up when someone who does have that stigmatized condition and showing how similar those people are versus the one difference that they might have – in this case, having or not having a substance use disorder.

We do a lot of work in our campaigns to showcase these people in social media advertisements or through webinars and video. But certainly, if you're working on the ground, we know that things like peer recovery specialists and figuring out ways to incorporate peers and people with experience into your programming is super vital. Four, five and six I'll move through a little more quickly because they're a bit more tactical, but we found that it's really important for movements to sequence action. So, starting with the influential actors first and then fanning out from there.

We also saw that positive and negative incentives were employed. So similar to other social movements like the ‘R’ word, which was sort of pushed by the Special Olympics, it was important there to call out negative behavior, just as important it was to celebrate positive behavior. So when people are doing things the wrong way and they're saying things that are really problematic or offensive as it relates to addiction, it's important to call those things out. Just as it is important to celebrate the positive things that are happening.

And finally, and I think this group probably understands this better than most. Action needs to happen at both very senior levels and at very high-level institutions, and it also needs to happen at the grassroots. It's much easier to create social change in a sort of one-on-one or more local capacity than it is to do a broader scale, big campaigns and PSA efforts. And so, it's really a combination of both of these things together.

So I'm going to take a few minutes just to talk about some of the data as it relates to race and stigma. This will come into play a bit later when we're talking about some of the interventions. But like I said earlier, what we found in the data is not just a sort of overlap between racism and stigma, but that actually being Black or Hispanic in the United States and having a substance use disorder is a compounding – you'll face compounding levels of discrimination, racism, or stigma in this sort of math equation of 1+1=3.

First of all, we see some big differences in overdose fatalities, specifically among Black Americans. In the first quarter of 2020, a much higher proportion of Black individuals were dying from overdose. And unfortunately, that number is very rapidly increasing. We see an 18% quarter over quarter difference from 2018 to 2020. Unfortunately, this is continuing to get worse. We actually know that there have been greater – I mean, across the board, there has been a problem with increasingly problematic substance use that has been done to cope with pandemic-related stress.

Unfortunately, that is in a more pronounced way affecting Black and Hispanic individuals –almost double that of White and Asian-Americans in the country. And we know – and this I think is some of our strongest evidence, which is from our survey in Pennsylvania and I'll describe in a little bit the work that we're doing in Pennsylvania. But you can see very clearly in the data how racialized stigma has a clear impact on public attitudes. For example, I always highlight this fourth bullet around employer stigma.

We actually know that White individuals are more likely to discriminate – all else held equal – against Black individuals with substance use disorder than White individuals with substance use disorder as it relates to their employment. And they're more likely to deny employment towards Black individuals – White individuals are – than the other way around.

And so, this requires really specific responses, and we'll talk about this in a little bit. But it means thinking about and targeting messaging and interventions to really address the way that these things overlap in a really troubling and very real manner. And the data is sort of unequivocal. It's very pronounced and clear and requires a more specific intervention.

So, I'll take a few minutes to talk about our plan and some of the interventions that we've done to date. First, I would certainly encourage you all to look at our White Paper, which can be found through shatterproof.org. This was released about one year ago and goes into even greater detail about all the topics that we've discussed today. If there are questions or you're looking for case studies or examples of other social movements, this is the place to go.

One of the really exciting things about this White Paper is the peer review process that it went through. We worked with over a dozen experts in the field to do an independent and academically rigorous expert review there at the National Academy of Medicine. And the National Academy of Medicine also had, I believe, 12 individuals with lived experience either in recovery or with a substance use – an active substance use, review the White Paper, offer feedback, bring their perspective. And that feedback was ultimately incorporated in the White Paper. So I definitely encourage those who are curious or have more questions, or who might be confused about any of the topics we've discussed today, to certainly check out the White Paper.

I think this is such an important slide because it really – I think for those of you who are doing work on the ground and really thinking about applying interventions, this is a really key point. One of the really big problems with the way that our country has responded to stigma and discrimination is that we've put out a lot of one-size-fits-all approaches and interventions. So, we've decided that the anti-stigma messaging and the communications work that we do needs to be the same across many different audiences despite the fact that that's not how stigma happens in different places. And we know that stigma is different dependent on which audience you're working with.

So for example, an emergency room health care physician or nurse who sees people overdosing and oftentimes on their worst day, are going to have a very different view towards those who might employ people who are in recovery or family and friends who might be working with someone who have close loved ones who have a substance use disorder. And so, interventions and the way that we respond need to be different and they need to be designed accordingly.

Shatterproof is doing a lot of work in these first few systems and we hope to grow into other systems in years to come. But all of – what I can say is the way that we approach community work is very, very different than the way that we approach work with our health care providers and employers.

And I would encourage those of you who do have multiple stakeholders or who work with a lot of different people to think about, in your own day-to-day lives when you're trying to make that change, why would a nurse think negatively towards someone with a substance use disorder? Why would your neighbor say something negative at the barbecue? And how can you design and think about the way to respond differently according to how those people might be bringing their experiences to the way that they judge and potentially discriminate against those with an addiction?

We have a number of different interventions and action items, and I think Steve will give you my contact information or Shatterproof's contact information if you don't have it, but I'm certainly happy to help navigate people to various resources. And my team can help do that, as well. There's a lot of different interventions across the educate, language, and policy. We'll talk about a few of them today. Certainly sharing stories, like I said earlier, is super valuable because what you're able to do is create that contact-based approach and strategy that we know is so effective at reducing stigma.

We've collected hundreds of stories of people who are in recovery, sharing how they got there, and really doing a lot of amazing work to decrease stigma. We have our Just Five© program, which I talked about earlier. We have a ton of resources related to language change on our website. We have a language guide, which provides recommendations on what to say and what not to say and how to actually implement that in practice.

We have a two- to three-minute video, which is really handy and sort of easy to distribute widely related, to language. So, certainly encourage you check that out. And I would also do a lot of digging on internal benefits and policies that exist at your organization or for organizations that you might work with. We know that this disease state, unfortunately, addiction is treated differently than other chronic medical illnesses like diabetes or arthritis. And you'll usually see that reflected in the policies that happen, so I would certainly encourage you to check that and all of those resources out.

So making a slight pivot, I'd love to talk a little bit about our pilot program in Pennsylvania. This is a really exciting effort that we're super, super proud of. And hopefully, one thing that – if you're sort of connected to policymakers or if you think it's sort of the state level, this might be an intervention that's interesting to you. If you're working on the ground, I would encourage you to think about how different tactics that we're using in this campaign might be able to be executed in your area.

So the context of this campaign is that it was funded and supported by the Department of Drug and Alcohol Programs in Pennsylvania. We partner with Penn State University, who is an independent third-party evaluator of our effort. And we also work with the Public Good Projects, a leading health communications nonprofit that acts to distribute all of the messaging and the work that we're doing. We started the campaign in September of 2020 and we have some really excellent results, which I'll show you today, from our six month evaluation.

One really critical thing to think about here is that we treat this campaign a lot differently than traditional marketing campaigns. There's a much greater focus on public health principles and evaluation and how you drive change in that way than your traditional marketing or communications effort. So, you're probably asking what do we do in this campaign. And there are three primary actions and interventions that we're taking. The first, and I would argue is maybe the most important, is our work with community-based organizations.

We know that community-based organizations are one of, if not the most, trusted resource for people in that particular community. And so, it's especially important that we have community-based organizations sharing these messages, distributing them, and being a part of this change and this movement. We work with over 70 community-based organizations in Pennsylvania. We hold monthly webinars where we're providing access to experts on social change and running effective campaigns. And we found that to be such an effective mechanism; much more effective than putting someone like me in front of a bunch of Pennsylvanians. Finding local community organizations to partner with is so useful.

Second, we work with micro-influencers. So these are people on Instagram and Facebook who might have 5,000 or 10,000 or 20,000 followers. People who maybe aren't big celebrities nationally. They don't have 5 million followers. But in the particular community that they're a part of, they're really trusted and prominent. And so, we work with a lot of them to distribute the message.

And then finally, we work through a lot of really interesting kind of targeted social media efforts, specifically using Facebook, Instagram, and Twitter. And we've collected over 100 stories of Pennsylvanians and we use different stories in different targeted ways. And so what I mean by that is a story recorded by someone in recovery in Pittsburgh is only going to be distributed and shared to other people who are living in Pittsburgh.

Stories that are collected of people who are from rural Pennsylvania might only be distributed to rural Pennsylvanians. And this is super critical because when you think back to one of the principles we talked about earlier – key success factors of contact-based approaches – we want those who have the stigmatized condition – or those without the stigmatized condition to feel as close as possible to the person that they're seeing in front of them.

So if you share a story from say someone in Arizona, in Phoenix, to someone who's living in rural Pennsylvania, the change doesn't – we know that the change is not as pronounced. And so, it's really important to think about that connection when you're trying to address and end stigma.

So it's really important that we're evaluating these efforts to see if they work, and we've been really proud of the change that we've been able to show. On the left side of the slide, you'll see some more traditional metrics that are used in campaigns. So for example, we know that approximately 3 million Pennsylvanians have viewed the campaign.

One thing – and this is like a pause moment just to kind of emphasize the point – but one thing that's super important about these metrics is that even if you can get your message in front of a lot of people, if you don't have evidence to prove that those people change their behavior or change their attitudes, it's hard to say that you're creating stigma reduction or real measured behavior change. And I think that's where a lot of efforts fail. You can say a lot of people saw something. But if you don't actually have proof that those people then changed the way that they operate in the world or had a different viewpoint after that campaign, it's tough to say that the stigma reduction really occurred.

I love this last bullet, which is the willingness to have a person with opioid use disorder as a neighbor. It's such a key component of social exclusion and public stigma. And one of the kind of really – I call it sort of the canary in the coal mine of how we think about stigma. For those who didn't see the campaign, only 38% of people agreed with that statement. They would be willing to have a person that has an opioid use disorder as a neighbor compared to almost 50% of those who did see the campaign who agree with that statement. So, it's sort of beginning to show some real proof that these interventions are starting to be effective.

So, I'll talk a little bit about some of the ways that we can actually begin to think about changing and addressing substance use and stigma in various settings. So first, I'll talk a little bit about the workplace settings. There are a variety of recommendations here that I would certainly think about taking back to your own work.

One, we know that there needs to be buy-in at sort of senior levels, whether that be management in a certain division or the CEO. The companies that we see today that are making the most progress on substance use certainly have buy-in commitment from their leadership.

The second bullet really relates to things we've talked about this entire presentation, which is that education is really important. If you have a big population walking around with misconceptions and stereotypes about addiction, convincing those people to then hire people with a substance use disorder will never be effective.

It's really important to speak with dignity and respect when talking about substance use disorder. Put on the lens that you might talk about diabetes or arthritis or any other chronic medical illness. If you wouldn't describe someone with diabetes in the way that you're describing that person with a substance use disorder, it might mean you should rethink or reposition the way you're framing it. And promote services that are available. If they're available, be proactive and try to connect people.

Substance use disorder is a disease that for so many people ebbs and flows, and it might be something that has – someone might have achieved a lot of stability in their life and one thing might push them in the wrong direction. So, being there and making sure that resources are very widely available and accessible is super important. And more specifically even outside of the workplace, what are some things that you might be able to do?

I mean, I think understanding the facts about addiction, right? Using something like Just Five© or going to the Shatterproof website or doing your own research about addiction is really important. There are so many stereotypes floating around about substance use, about treatment, and those falsehoods make it really hard to understand what to do. I love this second bullet because it's something that exists in so many other places.

We've seen a lot of progress on race in this regard, certainly a lot of progress on this as it relates to the LGBTQ+ community, that when someone is doing something that is hurting someone else to actually speak up and try to intervene in some way. I think this is really important with addiction. If you hear someone describe a co-worker with a substance use disorder as an addict or a junkie, or you hear other problematic language from a friend or someone saying that they don't want a person with substance use living in their neighborhood, actually proactively challenging that and trying to really understand what's driving that I think is really important.

I'll highlight this fifth bullet, too. I know we're coming up on time and I want to answer questions. But listen to people when they're sharing their story. I’ve had the distinct privilege of hearing hundreds of people with substance use disorder in recovery share their story. And every story is different, and I think the more stories you hear and understand, you realize how much this can happen to anyone. And because it can happen to anyone, it's really important that we have solutions for everyone available when needed.

To use our language guide – I certainly encourage you to check it out on shatterproof.org. It's free, widely available. You can download the PDF. One thing that we wanted to make really clear in our language guide was actually talking through some of the rationale and the reasons and the research of why you need to change your language. I think when you simply tell someone it’s nice thing to do sometimes, it's hard to make that change, especially if they're hearing it from other people in their community.

I always talk about a few studies that Johns Hopkins conducted around language – Johns Hopkins University – that really showed that language wasn't just something that made people feel bad. It actually shifted the way that people perceive treatment and the disease state, etc.

And so, if you called someone – if you said that someone had a substance abuse disorder or you said that they were a substance abuser, people responded with much more harsh reactions and sort of a desire to incarcerate or imprison those people versus if you say that they have a substance use disorder or if they misuse substances. Those people are much more likely to receive treatment and see that as sort of a viable path forward.

Here are some really common words to use or not use in your day-to-day life. These are in the language guide and certainly get highlighted in the language videos. I think it's really important to also think about – I think it's really important to think about person-first language.

So you wouldn't necessarily – moving away from words like alcoholic towards a person with an alcohol use disorder or someone who misuses alcohol where you are taking the disorder itself and making it not the core part of that person, right? An alcoholic describes one individual and it becomes their entire identity versus if you say someone’s a person with a substance use disorder, that's just one component of their identity and it creates – it makes creating behavior change much easier.

So, here are some other things that you can do when supporting families and doing the work that you do. Certainly, change language like we discussed; I think that's a really important practice. Think about empathy. And one of the ways that I would encourage you to do that is look at all these stories that are on shatterproof.org or part of our campaigns and efforts. It's important to understand the wide variety of ways that substance use disorder affects people and their family.

And the more that you can interact and meet with people that are struggling with this issue, the more you might be able to understand how to intervene or make change. I think minimizing stressors is really important. Substance use for so many people that are dealing with a substance use disorder is just one part of the many challenges that that family might be facing. And oftentimes, we know that it sort of deeply and intimately overlaps and interacts with other things that they're dealing with, whether that be racism or whether that be lack of housing or food insecurity or employment.

There's a lot of interaction and intersection with addiction, and so it's important to think about that. And certainly, one of the reminders to take care of yourself throughout all of this. It's important for me to say that supporting someone with a substance use disorder might be challenging. There are certainly ups and downs that make it difficult to provide the intervention that you need to provide, and that's part of the disease state.

I mean, those are symptoms of the disease that make it not only really difficult for that individual to live their own life, but it makes it really difficult for family and friends and supportive community members and providers to give the care that those people deserve. And so, take care of yourself when those challenges arise and take a breath and go back to trying to figure out how to support the next day or the next hour.

So, I'll stop there. I think we have a good 10-15 minutes for questions. I think Rachel is going to join me here from my team at Shatterproof to sort of bring up any questions that might have come up. I certainly encourage all of you to share those questions; really appreciative of you all taking the time. This is such an important topic and I know so many of you are so busy dealing with COVID and so many other issues. This is a really important one, too, and it's having real impacts on so many. And I'm just so appreciative you taking the time to hear about this and begin to address it.

Rachel: Great. So, I think we've got a few questions that have come in so far that are kind of population specific. So I think, Matthew, that we can start with one that was sent in earlier today that said: How has stigma in this area made it more difficult for minorities with no dependence on opioids or other drugs to obtain opioids when they actually need them?

Matthew: Yeah, it's a great question. It's such an interesting balance, and we have that conversation a lot of, as you do work to sort of destigmatize a substance use disorder, oftentimes that can create the false perception that you think that pain might not be real or that people who are suffering through pain through many other – for many reasons might not be able to get the legally prescribed medications that they need.

I think it's a reality that's happened that we certainly hear about. I think as it relates to sort of interventions, I think more nuanced and better education for providers is really critical. One, we know that there is a lot of racism and discrimination that exists within the provider community. So, doing more education there is really important. And ensuring that you're drawing that line to say when we want to destigmatize substance use and substance use disorder, it doesn't mean that prescription opioids don't serve a valid function for so many people.

And there's just a reality today that – we certainly have seen this with maternal health. We've seen stories of this very publicly – Serena Williams and others – that when Black patients and individuals – Black and brown patients and individuals are in pain, they're not treated and heard and listened to and treated compassionately. And so, there's a doubling down there that's needed to further education and further advocacy with the providers who are making those decisions so that they can better make more accurate decisions on when people who are asking for pain medications are needing it and sort of prescribe appropriately and legally, etc.

Rachel: Thanks. And then next, I think – we had a question come in about some specific recommendations or ways that we can speak out and help to inform others about substance use disorders, in particular in settings with young adults or adolescents who tend to joke about their own substance use, and actually have serious conversations about how that joking about them making light of substance use can actually be harmful.

Matthew: Yeah, I mean, I'm a big data nerd. But there's a lot of really interesting evidence about what happens when you have that language or that framing or the perception out there and what that means. I think it's similar to so many other topics, right? I mean, I think it's really hard, obviously, when you're dealing with youth or young adults that they're going to sort of joke about a lot of topics that are taboo as they're kind of understanding and navigating the topic.

I think, certainly if I were to kind of put myself in whoever asked this question’s shoes, like talking with those folks about how many of those people – when you're joking about people, how many parents are affected. I mean, the scale of the addiction epidemic is huge, probably something like 15–20% of Americans have a substance use disorder. And so, when you're throwing out words or terminology or language and – whoever you're speaking with, there's a very high probability that that person has a family member or a loved one or a friend who has a substance use disorder. And so I think those are really interesting, but it's a really big challenge. And I think talking about the scale and talking about the actual measured impact that language has is really important.

Rachel: Great. Thanks. One more kind of in the specific population range. When we talked earlier about some of the differences in terms of substance use rates and overdose rates in terms of the racial equity conversation, we did have a comment come through that was talking about the Native American populations across the United States and how they have been impacted differently. And if there was anything you wanted to share about what you've heard or read anecdotally about that or work that's being done in the field, that would be great to hear about.

Matthew: Yeah, it's a great flag. And I think – I work with a woman who represents a number of the tribes nationally in a workgroup with the Office of National Drug Control Policy and we've had a lot of conversations about how the addiction epidemic has affected that population. And if you go back to some of the first few slides that we talked about with rising unemployment, stressors related to COVID, trauma, and grief, I mean, we know that the impacts of COVID have disproportionately affected that population.

And so, it sort of reasons that with more trauma and more grief and people's family members and loved ones dying, that substance use has markedly increased. And it is a population that already had very significant substance use and substance misuse to begin with. And unfortunately, the provider shortages that exist across the country as it relates to providing care to people with SUD is even more sort of pronounced in that population.

So yeah, unfortunately, I expect those numbers to be – I don’t have them in front of me. But certainly, anecdotally from the conversations I've had with people in those communities, it's a real problem. It's continuing to grow. It's probably the most – make an argument the most affected group in – sort of being affected. And so, yeah, it's a great question. And I do think there needs to be more targeted resources for those communities. And I think that that's actually one of the things that we see incorporated in a lot of these recent federal grants and across the government of sort of direct allocations to support tribes that are trying to battle against the epidemic.

Rachel: OK, I think that leads actually really nicely into one of the next questions that came through which is if you can share some examples of how the community-based organizations and their leaders that you've worked with have really used their connections to their particular community to effect interventions, to affect change, etc. So I think that what you're talking about here leads nicely into that and if there are some specific examples you wanted to share.

Matthew: Yeah, I really like that question. So there's a few things that we've seen the community-based organizations do and obviously, the community-based organizations do a lot more than just support this campaign. So, I’ll just kind of answer specific to the campaign. Specific to the campaign, there's been – one, they're actively supporting and participating in a lot of our webinars, which I think is really important, right? So they're modeling supportive behavior, right? They're showing up, they're having one-on-one or two-on-one or whatever it might be conversations with people lived experience.

So, people see their community leaders not discriminating and not calling people with substance use disorders addicts, and that matters a lot to people, right? And so, we see them modeling that behavior in the campaign to other community-based organizations and other people in Pennsylvania. So being out there just about this topic and engaging on it, I think is really important. They're also sharing a lot of resources, right? I think it's funny. All I do every day is work on sort of substance use, addiction, etc. And I presume because it's such a big topic that so many people think about it and have resources. And I know that's not true, right?

And so, community-based organizations have a really important role to play to get content and resources and educational materials out there. And so, we've been really lucky to work with community-based organizations who have been able to share that via their email listservs or social media. And I have to say, I think it's much more powerful when a community-based organization shares a story of someone in their community than it might be if Shatterproof were to share that story because there's a more of a validation there and support there, which I really like.

Rachel: Great. Thanks. Could you speak a little bit, too, if different substances are stigmatized differently?

Matthew: Yeah, I mean, that's a huge question. I think it’s… Yes is the short answer, and I think it falls along a lot of the different lines that we were talking about earlier, right? Whether that be racialized lines or geography, etc. Even if you just think about alcohol use disorder, right? Alcohol is a legal substance in the United States versus something like heroin. And so, the way that society sort of interprets and treats people with alcohol is very different, even within drug classes itself, right?

We see big differences, and you can go back to the 1980s and how White versus Black and use of cocaine, and just the way that drug was particularly consumed had implications on the way that people were judged and sort of mistreated, with some people being very able to use certain drugs or misuse drugs and not have any sort of punishment related to it and other people being very harshly punished. And so yeah, the interventions need to be very different. We certainly apply different messages accordingly as we develop campaigns.

And it's really fascinating when you get into it. I think we even – we can go down so many paths here, but even the way that people start their addiction is oftentimes stigmatized in different ways, right? So the story of someone who starts using heroin because of a friend or going to a party and seeing it there carries a lot more stigma and shame than if someone says, hey, I got injured and I started using prescription opioids.

And I guess our perspective is that regardless of the type of substance or regardless of the way that you might have started using that substance, substance use disorder is a chronic medical illness. You deserve compassionate, quality treatment and care. You deserve employment and you deserve all these other facets of life, and shouldn't be sort of tiered based on where, how, or what substance you might have particularly used.

And frankly, today, most people seem to be polysubstance users anyway. There’s so much intersection and overlap due to sort of availability of different drugs that it would be somewhat of sort of a pointless distinction anyway.

Rachel: OK, thanks. We're close to time and we're going to – we have some questions we're just not going to be able to get to, unfortunately, but again feel free to send them on to the emails that are in the chat. Well, I think the last thing just to cover real quick before we close is if you have top two takeaways for people to use in their personal life or their professional life when they're supporting others, your kind of just take home messages as we wrap up this webinar today, that would be very helpful.

Matthew: Yeah, I think I'll do three actually if I can. I think one is educating yourself, which is what we talked about earlier. There are so many stereotypes about addiction. Pretty much every television show seems to have a problematic sort of portrayal of someone with a substance use disorder. And try to understand what's true and not true about the disease. There are tens of millions of people in the United States suffering with it. And so, a few television characters or the one person you knew from down the street is not really an appropriate – that is not representative. So, really try to understand the disease.

Second is language. If I could kind of just get everyone to – wave a wand and get everyone to stop saying addict and abuse, I think that would really make a huge difference in the way that health care providers provide care, employers provide employment, etc.

And the third one, which is somewhat related the second is really trying to intervene when you see it. I think for some reason… I don't know what it is with addiction. It's not something that people necessarily feel comfortable like standing up for others around, whereas I think so many people feel more comfortable and empowered around other topics. And addiction discrimination stigma is really real. It has real implications on tens of millions of people who are doing their best every day to improve their lives and get to a state of better well-being. And if you're not supporting those people, it could be a real problem.

So those are my kind of three big takeaways. Hopefully folks found this useful. I know, Steve, I think we're going to kick it to you to sort of wrap up. I really appreciate everyone's time today. Thanks, Rachel.

Steve: Thank you, Matthew, and thank you, Rachel. So appreciate this incredibly insightful conversation about these important issues. And they're complex and they're deep and they're not easily fixed, but you gave us so many good pointers. So, thank you for that. Matthew, could I ask you to bring the slides back up because there's a few points I want to make as we close out.

I'm glad people got good information. If you're having difficulty with any of the links in the chat, please right to health@ecetta.info. That's the address that's been put in the chat a number of times, and Olivia will put that back in. This is the link. It is also in the chat a number of times. It will also open up at the end of today's webinar for you to complete the evaluation. And when you hit Submit, then you will see a new link for the certificate of participation that I know many of you are interested in. Next slide, Matthew.

So, I want to thank everybody – all of you who stayed with us for the full hour and asked really insightful questions. Matthew and Rachel, thank you so very much for this great information. We do have a mailing list and that was linked in the handout and you can also write to health@ecetta.info. And last slide – one more. There we go.

So, you can always reach us no matter what your question is about health, safety, or wellness at this address, at this phone number. And all of our resources are posted on the Early Childhood Learning and Knowledge Center at that URL.

So again, Matthew, thank you so very much. Rachel, thank you very much. And everyone, we will keep the platform open for a few minutes so you can access what you need to access. Thank you, Olivia. Thank you, Kate. And that's it for today.

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