Taking Action Summit: Families Impacted by Addiction—Meeting Them Where They’re At
So excited to be here. For everyone that's in person, thank you for coming. For everyone that is virtual, thank you for joining us. It is a lovely day in Rochester, and we wish you guys were here, but we're glad that you had the opportunity to join us virtually.
So before we get started, I have the typical warm-up items that you will need to know. We're going to be having our QA session at the end. For our virtual folks, feel free to put your questions in the chat. We'll have someone monitoring those and giving those to me, so I can ask those questions for you.
And then for our in-person, raise your hand. I'm actually gonna go find you, and I'll get you your mic, okay? That's how we'll do it in this room for today. Sound good?
Awesome. Well, I am very excited to be here, because we have a fantastic speaker in Alexis Pleus. And I believe that she has a fantastic story that really speaks for herself, and I want her to take that over. I don't wanna spoil anything for you.
Of course, she wrote a book that really spoiled it for her, but if you haven't read it, I hope you can truly just have a great time, sit back, learn something new, and don't hold back in your questions, 'cause I'm sure she has some fantastic things to say. Without further ado, I would like to pass it off to our main speaker. (audience members applauding) - Thank you so much. So it's nice to meet you all.
As he mentioned, my name is Alexis. I always forget to put it on the slides. And we're really easy to find. We're an organization in Binghamton, New York.
If you're familiar with the location at all, we're like in the southern tier of New York. You can find us on social media. We have a website, all of that. Today we're gonna talk about families impacted by addiction, and meeting them where they're at.
If you're not familiar with harm reduction or harm reduction terms, that's like one of the coin terms of harm reduction, meeting people where they're at. There's some objectives, which I don't think I have to go over those. I don't think that anybody's going over their objectives. (laughs) I'm used to being an educator, so you always got to put the objectives on the slides.
So, what brought me to this work are my three tiny sons right there. It's only funny to the people who are present and in the audience who might have noticed that I'm like six foot tall. (laughs) So people at home won't recognize the fact that that's a, it's a good joke. So that's me with my three tiny sons.
Two of my three sons actually struggled with opioid use disorder. And we live in a really small town, rural America, Upstate New York. We've been in the same house since my youngest son was a baby. So I've been in the same exact home for 26 years.
And my sons grew up playing sports. I was a very involved parent. I'm a structural engineer. Their dad worked for the state.
We attended all the football games, the wrestling matches, did all of the things that every good American family is supposed to do. Ate dinner as a family, together at the family. And yet, our family has faced incredible tragedy as a result of opioid use disorder. So in 2014, I actually lost my oldest son, Jeff, who is the one there on my left.
And this picture was taken, it surprises people when they hear this, just four months before I lost him. So a beautiful boy, healthy, he was actually in recovery at the time and doing really well, and we lost him. And what ensued from there on, I mean, it wasn't bad enough. As if it wasn't bad enough, when my son was struggling and he was alive, and my other son was struggling at the same time.
When I lost him, I wasn't secretive about how I lost him. I told people I lost him to an overdose. That lasted for about 24 hours. In the face of losing my oldest son to an overdose, the stigma that was poured upon me was absolutely incredible.
People said absolutely horrific things to me. I even had a cousin who said to me, "Oh my gosh, did you know that he was doing heroin? If my any of my sons did heroin, I'd kill them." And I thought, "Well, I just lost my son, you know, and you're saying you'd kill yours."
So people say really horrific things. So I really, I went into silence. I didn't talk about how I lost Jeff for a while. I continued to talk about the loss of him, and how devastating it was to our family.
But I came really silent about the cause of death. Instead, I really poured myself into research, and was finding out that actually everything Jeff was telling me about the overdose epidemic was true. He kept telling me, "Mom, this is an epidemic. You can't imagine how many people are suffering."
And he was right. So I started pouring myself into research. At that time, this was 2014 when I lost him. There wasn't this national conversation going on.
And the conversation that was happening was about a heroin epidemic, very specifically. People weren't talking about pharmaceuticals. People weren't talking about polysubstance. People were not talking about harm reduction, at least on the national level.
And so, I'm doing all this research and people are finally starting to recognize there's a problem. And you might remember, there were all these little community groups popping up, like, "We're gonna address the drug issues in our community." So in our little town where Jeff graduated in a class of maybe 70 students, you know, we're like in a tiny town. (laughs) They created, there's an online Facebook group, and they created, Windsor's Drug Awareness Group.
And so I'm following that very closely. Everybody in Windsor knows each other. If I go to the grocery store, if I don't know your name, I know your face or I know your kid's face. It's like that kind of a teeny tiny town.
So this comes up. There's maybe 50 people in this Facebook group. They certainly know that I'm in it, and that I just lost my son. And we have people saying, "Well, we gotta figure out what we're going to do."
And somebody says, "What we need to do is get these parents to pay attention to their kids, know what they're doing, know where they are, get them involved in sports." And I'm like, "Do you notice who I am?" (laughs) I ignore it. The conversation goes on, super stigmatizing, super upsetting, people talking about enabling, all this, you know, parents ignoring what's going on in their kids' lives, all this terrible stuff.
And then someone said, "You know what we really need to do is, to wake people up and the high school students up, is to have the coroner come, and bring pictures of the dead bodies." And I thought, "Wow, like that's what you need to see? You need to see my son's dead body, to wake up and to find a a solution and to find out how to address this." I decided at that moment, that I would do whatever I could to help our community and other communities facing this type of stigma.
And so I started developing this organization, Truth Pharm, and we developed this mission. Our mission has actually never changed, to reduce the harms of substance use by raising awareness, reducing that stigma, because it prevents people from getting the help that they need, educating the public, and advocating for policy change. And you'll hear more as we go on about that. My other son, by the way, is doing remarkably well.
So that's the good news. Okay, I'm clicking. Is there something I point at? There we go, (laughs) okay.
So the other thing to be aware of is we're working with families who have been impacted by addiction, is that families face multiple forms of trauma when they have a loved one struggling with addiction. I know families who have found their own loved one who passed away. I know families who have had to revive their son or daughter or their loved one multiple times. I know kids who have found their parents overdosed.
Not only that, but then you have multiple generations impacted and involved. We have a lot of volunteers at our organization that are raising their grandchildren. So there's all forms of trauma that are involved with a loved one who has chaotic substance use. I used to joke that my house was like the busiest house for police, like (laughs) in the neighborhood, just because there were so many times where there were things going on that were incredibly chaotic.
And it was really a show. Stigma, families experience stigma too. So we talk about stigma related to the individuals. We don't talk about stigma that families face quite as much.
I mentioned that I'm a structural engineer. At the time that one of my sons was struggling, I was an engineering department manager at an engineering firm. Myself, I was struggling with my son who struggled with addiction. I was worried about him dying all the time.
He had overdosed. There was all sorts of things going on in our lives. I had another coworker whose son was going through leukemia. As far as I'm concerned, both tragedies.
We're both struggling to keep our kids alive, and doing everything we can to get help. There were fundraisers for his son, there were casseroles, there was community support, there was coworker support. My issue, I wasn't quiet about it. I talked about it and my boss said to me one day, "You know Alexis, everyone is really sympathetic to your situation, but I don't know that the workplace is the place to air your dirty laundry."
And so that's what families face, right? They face this type of stigma. They face judgment. It's always the parents' fault, you know, this whole host of things.
So we have to think about what families are going through also when we talk about substance use. And they face incredible judgment, so, even from professionals. I was called a helicopter mom because I was trying to keep my 15-year-old son alive, helicopter mom. The person who called me a helicopter mom said, "You know, if every time you swoop in to save him, every time you do this, you swoop in to save him, you're preventing him from hitting rock bottom."
A 15-year-old kid. A professional, MSW, in an office with credentials, said that to me. And this is still going on today, that this, these are the types of messages that we're giving families. "Let your kid hit rock bottom."
"Push them out of the house." "Don't take care of them." (laughs) "Make sure that you draw hard lines," right? I also know families who did exactly that, and that was the last thing they ever said to their loved one.
"I don't wanna see you until you're sober or clean." Clean, I don't like that word. "Until you're sober or clean, don't come home." And that's the last time they ever saw their child.
Everything that we can do to help families avoid those regrets, we absolutely need to do, because that is a lifelong thing for that parent. I have enough regrets of my own, and I didn't even enact any kind of tough love. But I can't imagine what these mothers go through who were advised by professionals to do things like that. And then no casseroles.
(everyone laughs) I always like to mention this because there's very little community support for someone whose loved one struggles with substance use disorder. And I actually wanted to tell you about a story. There's this thing going on in a town nearby us. The town is Norwich.
The town has a population about 6,000, so it's bigger than Windsor. We've been doing, our organization isn't in that county, but we do some work in that county. We have one of our volunteers lives there. They've had a surge of overdoses just like everyone else, right?
The stigma there is absolutely incredible. In rural America, I think the stigma is just so much stronger, so much worse. The judgment towards families is just so incredible. We've been working very carefully over the years to try to educate that community and reduce the stigma, which I know that we're making progress, but we, just as an example, I wanted to actually read a couple of these to you.
But we were hosting a Narcan training. It's actually next week, hosting a Narcan training in that community. And all we did was put up the post. Oh my gosh, of course right now, my phone is gonna do whatever it's doing.
I'll just tell you what I said. So we put up a post saying that we're hosting a Narcan training. It's all it said. Comments start rolling in on the post, and the comments say things like, "You know what you could really do If you wanna help prevent overdoses?
Let the junkies die so that we have less people who use drugs." This is in a tiny community, right? Our volunteer, whose son was saved by naloxone, comments and says, "Well if that were what we were going to do, my son wouldn't even be alive today. And now he's a productive member of society."
And the comments still came in. "Well, every time we save these people, we're giving them a chance to commit crimes in our community." "We're doing this, we're doing that." The other thing that I wanna mention is that very community, about two weeks before that, a mom that I know lost her second son, her second son.
And in this community, they thought it was acceptable to make comments like that about naloxone, and saving people's lives. This is what's going on in rural America. The good news to report is, we've been doing work in that county for three or four years, and I wanna say at the end, there's like 80 comments on that post. About 50% of them are compassionate, and caring, and trying to educate people and let them know, "No, my loved one's in recovery."
Four years ago, you wouldn't have seen one positive comment on that post. So I know that we're making progress, but there's so much more to go. So I wanted to give a few terms to avoid. Enabling, don't tell people they're enabling.
It's a terrible term. Really, what, if you see a parent doing something that seems confusing to you, probably all they're doing is anything that they can possibly do to keep their loved one alive and safe. Enabling is a word we just need to do away with. It just punishes parents for caring, it's terrible.
Oops, sorry. Tough love is the other one that we wanna get rid of. It's actually counter to nature, right? If you have a child, you know, you immediately feel unconditional love for that child.
Everyone tells you that's what you're supposed to have, unconditional love, unless they develop a substance use disorder, apparently. And then you're supposed to throw that out the door, practice tough love, which is a very odd term, kick them out of the door and then you know, god only knows what happens to them after that. Tough love is a terrible term. I would really encourage everyone to avoid using it.
And then the other one, codependent. I hope that you all know that this is not in the DSM-5. This is not a clinical diagnoses. It's actually just a phrase somebody developed, and sold a bunch of books about it.
It's not an actual clinical psychological term. (laughs) So let's stop calling people codependent as well. And then rock bottom. What a dangerous myth we're perpetuating when we say things like rock bottom.
Rock bottom for a lot of people is death. And the other thing that I have found now, seven years working with people who use drugs and people in recovery, rock bottom, even for people who say they hit rock bottom, rock bottom is, at every level you can possibly imagine. I had a young woman say to me once, which (laughs) I was just like, "Wow." She said, "I hit rock bottom when my mother learned that I used heroin, and she looked at me with disappointment."
That was her rock bottom. I've had other people say, "After my seventh overdose, I hit rock bottom," right? So rock bottom isn't a real thing. There's no actual measure for rock bottom.
Like, we need to completely eliminate using that word. This picture, a lot of the pictures, by the way, are from an annual event that we host called The Trail of Truth. It's our annual event for International Overdose Awareness Day. And we frequently get heartbreaking images like this little girl drawing on her father's, the memorial that we do for them.
But we see a lot of children there who lost their parents. I wanted to mention in our town, one of the things that we did to create change was we did a survey, because a lot of our elected officials kept arguing with us at the beginning of Truth Pharm, telling us one, the problem wasn't that big, and two, that we had tons of services in our community. Lots of services, if anybody wants help, they can get it. What a great big lie that was.
So we put out a survey to our community, and I just wanted to show you some of the results of what we heard back. So one of the questions that we asked was, "How long did you wait for treatment?" At that time, over 50% of them waited over five weeks. And then the next question we asked, "While you were waiting for treatment, did any of these things happen to you?"
The numbers that you see on there are quantity of people. We had 157 respondents. So the first bar that is 93 people responded, they committed a crime to meet the needs of their addiction. Second one, "arrested for a crime."
Next one, "violated parole or probation." Next one, "incarcerated." Next one, "went to the emergency room to try to get treatment faster." Next one, "I was overdosed.
I overdosed and was revived." That's all while, the question was very specific. "While you were waiting for treatment, did any of these things happen to you?" So we, as Rob said in his presentation, what we need to do is make treatment immediately available.
The second someone wants treatment, it needs to be available. And then we allowed people to give other responses as well. And I think that these are just really poignant, sad and powerful statements. "Kept using in hopes of dying."
"Heart surgery and both lungs, endocarditis." "I had a CPS case." "Robbed my mother until she had nothing." "Kids sent to foster care."
This is what's happening to families due to addiction, and we are not addressing the issue with families enough, well enough, and we're not doing it with harm reduction. OASAS, New York State Office of Addiction or Awareness, Addiction Awareness Services, they did make it so that treatment providers can provide services to families, but it's only if the individual's actually in treatment. So it's not terribly helpful for families, and it's very old school, non harm reduction-based family services. Other complications, I'm gonna skip that one.
Speaking of medical care, this is another thing that happens to families who have a loved one who struggles with addiction. This is the actual discharge papers that a mother shared with us that were after her son overdosed and was taken to a local hospital. These were the discharge instructions. "Please stop doing drugs," as if it's that simple.
"You were almost dead today. You could die from this in the future. Follow up with your primary care physician in three to five days." This is unbelievably useless.
It's stigmatizing, it's insulting. And here was a mom with her young son, he was under 20 years old, who had just overdosed. She thought she was going to be provided some kind of help. And this is what, the help that they were actually provided.
Education actually empowers families. So I'm gonna talk about a few of the services that Truth Pharm has developed to help families in our community. One of the tools that we make sure that we incorporate for families, educating them, is motivational interviewing. But it's also one of the things that I would wanna encourage any of the professionals in the room or watching or listening, use motivational interviewing with your families.
It's the same exact situation, right? No one likes to be told what to do. People need to be listened to. And if you ask open-ended questions, you're going to learn so much about the person and the situation that they're going through.
Provides really good tools, just to learn more about what the family is going through. So rather than telling them "practice love" or calling them enablers, or calling them codependent, or telling them to kick their loved one out, ask them questions. One of the most powerful questions you can ask a parent is, to get them down to the point where they can start making really good decisions for their loved one is, "What are you really afraid of?" They're afraid of their kid dying.
So every single time when we do this, "What are you really afraid of?" "I'm afraid of my kid dying." "Would you be interested in learning about some tools that might help prevent that, beyond making them stop doing drugs?" Because as we know, if you could have this other conversation with them, "How successful have you been with making your kids stop using drugs?"
"Well, not very successful." "Do you think you can make a person stop?" "Probably not." "Okay, well what are you really afraid of?"
"I'm afraid of them dying." "Are you interested in some tools that might help prevent them from dying while they're using?" Most parents are going to say yes, and then you can introduce a lot of harm reduction practices to those parents that would be really helpful. We have families who have set up harm reduction practices in their own homes, such as, "Please don't lock your bedroom door."
"Text me when you use, so that I can make sure you're breathing in a half an hour or an hour," right? May sound radical, may sound crazy, but if you gave me my son back today, I would do the exact same thing. I would literally do anything I could to have him back. So at Truth Pharm, we have something called Family Support Services, which includes three layers of support for families.
The first one is group peer support. There's a little bit of educational component, and then it's just parents talking about their struggles with each other, talking about things that did work, talking about things that didn't work. And then we close with a self-care exercise. We also provide one-on-one coaching, so we have coaches who are trained in facilitating conversations with families.
They're trained in motivational interviewing. They're trained in working with people who use drugs. They're harm reductionists, and they provide one-on-one coaching for families. And then we have an educational program called Clearing the Confusion.
I put a bunch of stuff on the rail over here for people to take, if you're interested in good swag. Truth Pharm has great swag. We have good stickers and good pins. So pick yourself up some good swag before you go.
And Clearing the Confusion brochures over there. So Clearing the Confusion is a 10-week educational program that we've developed for families. We literally developed the topics based on, like the most frequently asked questions to us, the support we found we were giving to families over and over and over again. And so the most commonly asked questions, the most common sought support, we developed the topics based on that.
Just watching the clock, because I'm really good at talking. (laughs) Got to make sure, I don't wanna go over. So this is the brochure of it. I'll skip that.
The first one that we do, and it's a all harm reduction-based program. The first one that we do, we call it Substance Use Exploration. We used to call it Signs and Symptoms, and we changed the name to be even more harm reduction-based approach. And what we do is we talk to families about why people use drugs.
And believe it or not, if you get a group of parents in a room and you say, "Why do you think people use drugs," they have really intelligent answers, and probably they have really intelligent answers because they probably used drugs at some point in time, which it seems like once we grow up and have kids, we tend to forget. I love to remind people of that, because I mean, we all were 18 to 24 at some point in time. So we talk about, why do you think people use drugs? We go through all of the answers.
We hear all of the answers. If it doesn't come up we'll mention, "Hey, sometimes it's just to have fun." Usually the typical answers come up, right, like mental health issues or trauma, ACEs score, all of these other things. They might also just use them to have fun.
Like, let's recognize that, right? This is one of the concepts that we present during that training. It's one of my favorites, because families forget that substance use can be things other than unhealthy, right? We talk about the fact that substance use can be exploratory.
So that's when we're first trying out a substance, seeing if we like it, finding our personal limits, finding out how much to use, that it either makes you feel great or terrible. It can be recreational. So sometimes people use substances just on an occasion, in a healthy way. It can also be problematic.
So I always relate this to like the binge drinker. It's not a person with an alcohol use disorder, right? They wouldn't clinically be able to be diagnosed as that, but every time they drink, they drink to excess, and it's a problem. That's a binge drinker, right?
It's problematic use. It can be controlled. There are people who use substances on a routine basis, but have somehow managed to control their use. It can lead to physical dependence, which is very different from a substance use disorder, which is really important for families to understand the difference between physical dependence and actual substance use disorder.
We actually even give parents the DSM-5 checklist for opioid use disorder, so that they can see, if a clinician was sitting with their loved one, what they actually would need to check off to qualify for opioid use disorder. We get parents who will still come to us and say, "I'm really upset. My kid is smoking pot, and I heard that you help families." And it might be like, "Well, if you start to explore their use," 'cause you're not gonna wanna make them feel bad, of course, about that, right?
You start exploring. "Well what are your concerns?" And it's probably something that's actually more like controlled substance use in that case, right? So you can have this conversation with families, and help them separate things that are really triggering, really scary, really dangerous, and things that need treatment possibly, to things that are like, "Okay, I can actually just maybe provide some guidance to my loved one about how to live safely and healthily through this substance use."
We also talk about the science of substance use. So we actually go through the mechanisms and how the neural pathways are altered, and how the opioid receptors are increased and all of that, so families understand all of that. And we also provide, we bust myths and we provide truths. So we talk about the fact that not all addictions are the same, despite the fact that there's a lot of addiction professionals out there still saying addiction is addiction is addiction is addiction, which is completely false.
No, it's not all the same across all substances, or across all items, it's just not. It impacts people differently physically, chemically, and also their brain. And we give some of the contributing factors to why a person might develop a substance use disorder, when maybe the person next to them used the same drugs but never developed a substance use disorder, right? So it really helps families, because families feel so much guilt.
They feel so like they did something wrong. This is something they must have done to make, you know, that caused their loved one to become addicted, and helping them understand, there's actually multiple factors that may have contributed to their substance use disorder, or make them more prone to. And we have a week that talks about self-care and healthy boundaries. So during that week, we break those myths down about tough love and enabling and codependent and all of those things.
And we talk instead about developing healthy boundaries. Healthy boundaries, I'm sure we have a lot of professionals in the room. Boundaries are individualized, right? You can't make make a set of boundaries that would apply to all persons or all families.
Boundaries are individualized. And so we teach families how to create their own healthy boundaries, and how to have that conversation with their loved one. One person's healthy boundary might be, "Leave your door unlocked and text me." Another person's healthy boundary might be, "I can't have the substance use in my house.
I still love you and I wanna see you weekly for lunch, but I just can't have it in my house," right? It's up to that individual to determine what their own healthy boundary is. And of course we talk about self-care, because as parents go through this, naturally, no different than my coworker whose son had leukemia, and he became obsessed with that, if your kid is on the verge of dying, you're going to become obsessed with it, and you're going to probably stop taking care of yourself. So helping family members recognize they have to take care of themselves as well.
We talk about the types of treatment that are available and how to obtain them, but we also talk about the effectiveness of those types of treatment. Most family members who come to us say, usually starts with a conversation like, "My son won't listen to me. He thinks he doesn't have a problem, and I just want him to go away to inpatient so bad." Parents for some reason think that inpatient treatment is like this magical cure.
I did the same exact thing. My son Jeff, the longest amount of treatment he ever got was 11 days with state insurance. (laughs) But I still thought that was treatment. And I was angry towards him when he returned to use about three weeks later, which of course, now I have that regret for the rest of my life.
But explaining to parents that the efficacy of inpatient treatment for 30 days is about 16% at best, it's really terrible. And so then they're like, "Oh, well what does work? I thought that I needed to get them to go to inpatient treatment." So exploring the modes of treatment that are available, and talking about the success rates for each of those will probably sway the families into helping their loved one make some better decisions about what treatment might work.
And a lot of times the loved one is really resistant to this going away to some inpatient facility, but they might be more receptive to visiting a Suboxone doctor, right? And this is one of the weeks that we provide as well, is the medication-assisted treatment. This, the presentation that we give was developed by Maureen Hawley, who's an RN, and she works for the state, and she's obsessed with the topic. The presentation is unbelievably comprehensive.
I just threw a few of the slides in here, just to kind of give you a sampling of it. But we talk about each of the types of medications that are available to treat opioid use disorder specifically. Unfortunately, that's all we have at the moment, other than alcohol use disorder as well. And then we talk about the fact that research supports its effectiveness, so families can learn about that.
We talk about the fact that numerous studies have shown that MAT reduces overdose deaths, drug use, use of needles, disease rates and other infections, and other life complications. So families get this information. One of the things that I forgot to say to you earlier that's incredibly important, one of the main premises of harm reduction is autonomy. I'm sure that anybody in here who's a harm reductionist knows, right?
So if a person is standing in front of you and they use drugs, we practice, we believe in their autonomy. If they're saying they don't think that some type of treatment would be good for them, we believe them. If they say they need to do X, Y, and Z for their healthcare, we believe them. We need to do the same thing with families.
If we're gonna take a harm reduction approach with families, we have to practice autonomy with families. So something that we never do with these families that we work with, we never tell them what they should do. We never say, "You shouldn't try to get your loved one to go to inpatient treatment because it doesn't work." We don't do that.
We just give them the information. It's up for them to decide what they think is gonna work best for their family. So the same thing with medication-assisted treatment. Most family members are not well-educated on medication-assisted treatment.
I again, I am a really bad example of what I did with my son. If I had had that information when he was alive, and he had said to me, "Mom, I've heard about this buprenorphine or suboxone. I'm interested in it," I probably wouldn't have been such a jerk. I would've been like, "Research says that it's highly effective.
Let's go ahead and try that," right? So a lot of times if we start with the families, we're actually gonna have much better outcomes with the person who struggles as well, because we need to get the families on board a lot of times in order for the person to get the type of treatment that they need and the support at home that's critical to their recovery. And then we talk about the effectiveness of medication-assisted treatment. We even talk about the fact that it's really important that it be taken long enough to be effective.
We give the terms to know, which is super important, and we even have the little pictures that show the difference between methadone, buprenorphine and naltrexone, and explain the differences in a way that any parent can understand. We'll skip that one. And then we also talk about harm reduction. And like I said, believe it or not, families who initially came to us saying, "All I want my son to do is to stop injecting heroin.
That's all I want. I just want that." Of course that's all you want, right? I get that.
It's scary, it's dangerous, it's a really risky time to be using drugs. But can we make this person stop using, no. So what are we going to do in the meantime? We're gonna practice harm reduction with the person who's using, is using substances, which we're also gonna give the tools to the families, so that the families are aware.
Since doing this type of education, we've actually had families say, "I didn't even know that they could get syringes. Where's the place that I can take them to to get them?" So families are not resistant to harm reduction. They just don't have the information.
So teaching them how they can reduce risks for their loved one, most families will actually employ that. And imagine, and that's what we say to the family members when they say, "I would be interested in this." We say, "Imagine how supported your loved one is gonna feel when you say this to them. 'I learned that you can obtain new syringes, and I can take you to the agency that provides those, and it reduces your risk of disease transmission.'
Your son or daughter is going to feel so loved in that moment." It's just really beautiful for families. And this is one of the slides from the presentation. When does a person's life have value?
I was sitting next to Justine in the other presentation, and she said to me how triggering the word recovery is to her. And I feel the same way. We put so much value on recovery in the United States that it's like every time, we like overinflate and congratulate and like, celebrate and make such big noise about recovery, it's like, but this other group, "Yeah, you know, until they get to recovery, we're not so into them," right? "We love our kids before they use drugs and we love them when they're in recovery, but when they're actively using, we gotta practice tough love."
It's really counter, right, to any kind of progress that we could make. So we need to ask ourselves, when does a person's life have value, before they started using drugs, after they stopped using drugs, or maybe even while they're using drugs, right? We can't get them to recovery if they're dead. We also teach families how to change their language to reduce stigma and create change.
As Rob mentioned in his presentation, using a word like addict is really damning and sad, and it's a word that we really need to eliminate. And then we give families alternative terms to use. During this session, we actually give little practice exercises to read out loud. And like, one of them, one of the slides says, "My son is an addict.
He uses heroin." Totally commonplace language. And then we ask the participants, "Can you change that using the terms that we just presented?" And then the person will say, "My son suffers from substance use disorder.
He uses heroin or he uses substances." And we ask, "How did that feel?" And they say, "It feels incredible." It feels really good to refer to somebody that you love with a term that isn't so damning.
It like, actually feels better. And then we do a motivational interviewing primer, for families to help them reduce conflicts. It's only like an hour. So any of you who are familiar with motivational interviewing, it's like the shortest motivational interviewing training that you can ever possibly give.
But we cram as much in and we teach families how to ask open-ended questions. We talk to them about, how do you respond to your doctors when your doctors tell you things that you need to do? Well, not very well. Of course not.
None of us like to be told what to do. What if the person were to ask you questions instead? Well, it feels a lot better. And so we teach families how to do that with their loved ones.
And families have told us they can't believe how the relationship has changed by changing the dynamics of their conversations. During that presentation, we introduce them to the stages of change. Most families have not been exposed to this type of information. So it's like new information for them, and it's really powerful for them to learn.
This is how we all change. And then we ask family members like, "Can you think about some change you've ever made in your life? Can you recognize that you also went through those processes, right? There was a time when you had this problem, that you didn't recognize it as a problem.
Then there was a time when you recognized it as a problem, but you weren't sure you were ready to make a change." Let's say it was dieting. It's like, a lot of us are always on the verge of going on a diet, right? Similar kind of thing.
Is it easy to take that first step, no. What if somebody said to you, "Here's the way to diet. Eliminate all bad foods from your life, starting tomorrow, and don't go back to ever eating another bad food again, or we're gonna say that you started your dieting over, even after six months of dieting and weight loss." That's terrible, right?
And that's the same thing that we're doing with recovery. This is really eye-opening for families. And then we talk about the stages of recovery. This is one of our most powerful presentations, because we always bring in a panel of people in recovery.
We believe that recovery is self-defined. And so our panelists of recovery can be people in all ranges of recovery. We go through and talk about the stages of recovery, and then we ask our panelists, "Can you tell us what that experience was like for you?" And they talk about their personal experience through each of those stages of recovery.
And then the families at the end get to ask them questions. And it's such a beautiful opportunity, because the dynamics within families, sometimes the relationships have disintegrated so badly. Parents have burning questions they would love to know that they're terrified to ask their own son or daughter. And this gives them the opportunity to ask questions from people with firsthand knowledge.
And it always blows their mind, you know, this whole experience of talking to people who are very open about their drug use. And one of the questions that we ask our panelists also during this session is, "How can family members or friends best help or support recovery?" And again, the things that come up for families are absolutely instrumental in changing how a family's going to approach their own loved one's recovery. We have had people in recovery explain, "Like every time my mom suspected that I was using again, it just made me wanna use again, because I felt so judged by her, even though I was working so hard on my recovery."
So to have families hear those firsthand accounts and how their reactions to things make them feel is just incredibly powerful. That's always one of the best weeks. And these are some of the comments that we've had back from Clearing the Confusion, on the evaluations. "A complete overview of patient rights," blah blah blah.
"Training was presented in a very precise manner that could be understood. I had no idea Narcan was so easy to use." How sad is that, that people are showing up at our trainings, family members who have a loved one addicted to heroin, didn't even know Narcan existed, didn't even know that it was easy to use. So we give family members all of those tools that they need.
And I'll leave that one up. The last one says "Questions." I'm so proud of myself 'cause it's 3:29, and I think I was supposed to leave 15 minutes for questions, (hands clapping) and I always go over, and I didn't. (laughs) (audience applauds) - Thank you, all right.
First and foremost, that was powerful, vulnerable, and impactful. Thank you very much. And I wanna open it up to questions. For those of you who joined a little late, just raise your hand.
I'll come to you, give you the mic, and we'll have some questions available for online. So, anyone have anything for her?
- And I have one request. I'm severely hearing impaired, so if you can remove your mask when you ask your question, I'll more likely be able to hear you. (laughs) - [Audience Member]
What could we do to help you get your program to more families who are impacted?
- That's a wonderful question, thank you. So we are, this program is being studied currently at Binghamton University, because our goal, our next goal with this program is to create a Train the Trainer program, so that we can get it out to every agency we can possibly get it to, and let them deliver it. In the meantimes, we used to deliver this program only in person up until 2020. Then with COVID we went online, which actually is really beneficial.
The program currently is covered under RCORP, an RCORP grant with Reach Medical, and we deliver it all, every, like it's 10 weeks, we take like two weeks off, and then we deliver it again every year. So right now anyone can register. We actually have a lot of professionals who sign up and register, you know, just to learn more about the topic. And aside from that, we're happy to offer the training to anyone in the meantime.
For other agencies we could offer it, you know, if you had a special group you wanted to offer it to, we could absolutely do that. But we really hope to have a Train the Trainer developed very soon. And then our next step would be to get hopefully OASAS and SAMSA to have it. You know, the goal of the study is to have it be shown that it's an evidence-based practice.
Once we can show it's an evidence-based practice, hopefully get SAMSA and OASAS on board to say that it is, so that treatment centers would want to provide it, and it could be a reimbursable for them. But that's a wonderful question, thank you.
Any other questions? See you.
- [Audience Member]
Thank you. Thank you so much for everything you shared today too. And I'm just curious, right now this is in New York State. Do you think this program could translate to other parts of the country, possibly?
- Do I think it can translate- - [Audience Member]
Into other geographic locations in the country, the same principles?
- Absolutely, yeah, yeah.
- Okay, okay.
- Absolutely, the only session that we need to change is the types of treatment and how to obtain them, because we did that very specific to New York, and it is different across the nation. Like every state kind of has their different term for the types of treatment. But I think that what we're going to do is just generalize it more, so rather than using New York State's terms for the types of treatment, just use like detox, inpatient, intensive outpatient, and explain it that way to folks. But yeah, that's a great question, thanks.
Awesome, anyone else?
- [Audience Member]
I have a couple questions. The first question, you mentioned a cost. Is there a cost?
- Not, there never has been.
- I'll put it that way. Every time we've delivered this program, it's been under a grant, and so it's not, there has never been a cost to date.
- [Audience Member]
Okay, I think this is amazing, and it sounds very effective. I've worked at facilities and been a part of facilities that have tried approaches to reach families, everything from Nar-Anon on to just basic support groups, and we've never been able to obtain attendance. And I'm also in a very rural area. So just how do you network and get that out there?
'Cause I've had families, and I've talked to them, and they've been like, "Why do I have to put in the work," or, "Why do," or like they don't wanna do the work, you know what I mean? They want the loved one to do the work, and it's hard to get people, and sometimes we have a good attendance at the beginning, and then they fall off, and just how do we get them? 'Cause it's such a need, but how do we get them there?
- Yeah, so a couple things that we actually have learned. One, if you offer the training at a location that's related to substance use, families are less likely to go. So if we offer this program at a treatment facility, we have less people attend than if we offer it at the YMCA or the library or a church, because families feel like, "As soon as I go in that door, everybody's gonna know my business." And especially when we're talking about rural communities.
Like, we have this literal example from that town, Norwich, that I mentioned. The first time we offered the program, got very few attendees. The next time we did it and it was in a public health building. Next time we did it at the YMCA.
Families came, and one person in particular came. She was a nurse who worked in the local hospital. She was like, "I saw it before and I wanted to go, but I just couldn't go there because I felt like everybody would know my business." But if you go into the YMCA, it's like anybody can go there, which is sad, right?
But it's also the reality that people face. So that's one thing I would say, is to think about location, and make it an area where families don't feel like they're stigmatized just by going there. And I mean for us, mostly it's word of mouth. Like, when I created Truth Pharm and set out to do this work, I didn't know that I would be working with families mostly.
I really wanted to work on policy and education. I mean I am, but in advocacy, but because I lost my son, and that's the message that's out there, families gravitate towards us. So you know, if you can find, it's no different than like if you're trying to create change in a medical practice, you find a champion, right? Same thing with families.
Find a local family member who's willing to be vocal, and strong, and let people know, and talk about their story openly. And now you have a champion who other families are gonna gravitate towards. That's what makes people feel safe, I think, is seeing that somebody else is openly talking.
- [Audience Member]
Okay, and just one more question. You said it was now online and, but it's, you know, specific to the New York area. Do you currently have anybody that's like out of the New York area that's benefiting from these services and attending?
- Right now because it's online, we've had people attend and like, you know, from California. We have people attending all over. We haven't set up, like what we, we get this request a lot, is to set up like a West Coast timing of one, because the timing of ours is based on East Coast time, or Eastern Standard Time. So right now it's online.
Anybody can access it from anywhere. But the timing of it might not be very good for, like, families who work during the day.
- [Audience Member]
Okay, so I could hand this information out to- - Yeah.
- [Audience Member]
Families of the clients that I work with, and they can take advantage of it.
- Yeah, absolutely, they can attend, yep. They can attend.
- Like, if we're teaching it for a New York grant or under a local grant, but it's online with unlimited participants. By the way, the flyers don't have the current method to register because those were from when we did the training in person. But if you go to either our, our website has our calendar on it, and you'll find Clearing the Confusion. There's a link to register right there, and it's also on our Facebook page under Events, and you can just click to register.
Register and then you'll get a Zoom link in your email every week to attend. Thanks for the questions.
- And we can train family support coaches as well. Like that's another thing that like, if people are interested in developing somebody at their agency who can help families, training somebody to work with families is instrumental as well.
- [Audience Member]
Thank you very much for coming to this conference. It's really cool to see the work that you've been able to do, and all the families I'm sure you've been able to support, and people, and I was just really curious about the survey that you spoke of, with the individuals, the 157 that were unable to access services for that time. And just in particular, just more about it, like how you reached them, and if you were able to see results from the survey, and any change in that community, if you're able to speak to that.
- So what I think I heard you say- - [Audience Member]
- No, it's okay, because this is what I do every day of my life, translate what people said, 'cause I get about one every four words. I think I heard you say one, how many people have responded to this survey, and- - [Audience Member]
Oh no, just, and I'm also hearing impaired, and I lost my hearing aids, so I feel you. (laughs) - Thank you.
- [Audience Member]
But in particular, that survey, just more about it, some of the methods you guys used to reach the population.
- [Audience Member]
And then if you were able to see results in the community, like did people respond to that?
- I love that, okay.
- Thank you. So the survey was incredible, actually, because at the time, this was like really in very early Truth Pharm days, and we were like really vocal, kind of viewed as a bit of, like kinda radicals. We were pushing this harm reduction agenda in our area, when nobody else really was. And we were pushing back on our county government.
We literally proved that they were lying about over how many overdose fatalities we were having. And so we had a very large, we still do have a very large social media following. So the community was really engaged in our work, and I think that that's what helped us reach the population, that because we are speaking to them every day and they, you know, it makes me wanna cry, but they viewed us as the agency that was fighting for them, you know, and so, and we did demographics on the people who responded to find out, "Are you self-reporting? Are you reporting for a loved one?"
And it was about 50/50 in terms of who responded. And the result, I'd love to do a presentation on the results of that survey, because it's really powerful, and I wasn't smart enough to know yet then to involve an actual researcher. I wish I had, because I'd love to have the results published, because they're really powerful. But at the end of it, what we did, was we put them all in a document, a report.
I gave it to Rob, I met with Rob. I said, "Rob, we got, we need some changes." but we put them all in a report and then we hosted a community-wide event, and we presented them to our elected officials, and we had 10 elected officials present, who sat up front to hear the results of the survey, and 150 people attended. It was really incredible, and people really felt empowered and heard, you know, because here our elected officials are, saying, "There's treatment available if people want it.
They have to want it," was what the public officials were saying. And we were saying, "No, like it's hard to get. People have to wait too long. It's terrible treatment," and I, because you're interested, I'd love to show you the whole thing, but take my card.
I'll email you the report. And a lot of the, almost every question that we asked, we allowed anecdotal answers, and they are heart wrenching. When we presented that survey to our elected officials, we presented them also with like a three-page letter of changes that we expected to see. Many of those changes have been made, many.
Our county health department now, I get chills 'cause I'm so glad and excited. Our county health officials now call Truth Pharm and ask us, they'll tell us, "There's an overdose surge. What messaging do you want us to put out?" And it's all harm reduction-based messaging.
So, and our county health department will put out a PSA and say, "Don't use alone, have a naloxone on hand." And they've taken brutal attacks for doing that, but they're doing harm reduction messaging, which it, when we did that survey way back when, there was none of that going on. So there have been incredible changes since then. Also OASAS, and also New York State level, there have been really incredible changes that have happened.
Not enough yet, but we do see positive direction, yeah.
- [Audience Member]
- You're so welcome, thank you so much.
- [Audience Member]
I have one other question too, if no one else has. I don't want to take all the time. I'm just curious about the name Truth Pharma.
- (laughs) I like that question. So, I mentioned when I lost Jeff, no one, everyone was calling it a heroin epidemic, if they were calling it anything at all. You know, it was just starting to make national news. My son's path into substance use was a prescription for a football knee injury.
I don't talk about that a lot anymore, because I don't want people to only have sympathy for people who had that route. But, when I lost Jeff, and if you looked at the CDC's data at that time, more people were dying of prescription medications than all other drugs combined. A lot of people don't realize that, or know that. That's another thing that's changed drastically.
And so when I named the organization, I said, "We're gonna be an organization that one, always tells the truth," because I was really sick of all the lies that were being told, and even professionals telling parents lies. So I said, "We're always gonna tell, we're gonna be an organization that always tells the truth, and we're gonna expose the role that the pharmaceutical industry has played in creating this epidemic." And then there's like a little play on the words. I told you I live in the same house.
It's on 60 acres, and before my son passed away, he wanted to turn it back into a farm. And so it was kind of a play on words for him as well, thanks.
- Thank you so much. We are at time. Please pick up swag.
- Yeah, up swag.
- Pick up the swag. If you have additional questions, the UR Recovery email is available to you. Thank you so much for coming, and one more time, can we give it up? (audience applauds) - Thank you.
- Thank you.
Founder & Executive Director, Truth Pharm