The Portable Humanist Podcast SeriesListen to Vermont Humanities talks while you’re on the go.
Junkie, Sister, Daughter, Mom: A Love Story from the Opioid Epidemic
In October 2018, a young mom named Madelyn Linsenmeir died after a long struggle with addiction. Her obituary was read online by millions of people. Madelyn’s sister, Kate O’Neill, wrote that obituary. In this episode, Kate shares her family’s experience loving and losing Maddie, the stories of other Vermonters impacted by this disease, and potential solutions to the opioid crisis.
The talk was recorded at the Brooks Memorial Library in Brattleboro on November 6, 2019 for our First Wednesdays program.
Kate O’Neill: What if instead of stigmatizing and judging people with addiction, we loved and supported them, even if they’re not sober or trying to get sober? What if we viewed people in the throes of their addiction who are actively using drugs every day as people with the disease who are worthy of our love and support? Because that’s what they are.
Welcome to the Portable Humanist, the podcast where you can listen to Vermont Humanities talks and learn when you’re on the go. I’m Ryan Newswanger.
In October 2018, a young mom named Madelyn Linsenmeir died after a long struggle with addiction. Her obituary was read online by millions of people. Madelyn’s sister, Kate O’Neill, wrote that obituary.
In today’s episode, Kate shares her family’s experience loving and losing Maddie, the stories of other Vermonters impacted by this disease, and potential solutions to the opioid crisis.
Kate’s talk was recorded at the Brooks Memorial Library in Brattleboro on November 6, 2019 for our First Wednesdays program. Here’s Kate.
Kate O’Neill: I am not an expert on addiction. I’m not, you know, professionally or personally, I’m not a doctor or a social worker. And I feel really lucky to not personally have substance use issues. What I am is one of the millions of people who love someone with opioid use disorder. We are many and we are growing, along with the number of people who have this disease. In 2016, more than two million people in the US had an opioid use disorder, which I think is a number that’s probably grown pretty significantly since then.
Kate: Last year, the American Psychiatric Association did a poll and found that nearly one in three Americans know someone with opioid use disorder. So that means that at least a third of us in this room know someone with opioid use disorder. And I would argue that all of us know somebody with some kind of substance use disorder. Right. Whether it’s opioids or alcohol.
Kate: And I’ll bet many of us love or loved someone with this disease. So that’s my expertise. It’s the same that I imagine a lot of you have loving one of the millions of people with opioid use disorder. So that’s what I’m going to talk about tonight. My experience loving my sister, who was addicted to opioids.
Kate: I wanted to clarify a few terms to start off with that, I’m going to use tonight. I use the term “opioid.” You hear “opiate” a lot. And just I wasn’t aware until recently that an opiate is a drug that’s naturally derived from the opium poppy plants. So that includes things like heroin and morphine and codeine. Opioid is a broader term and it includes opiates, but it also includes synthetic opioids, which are not naturally derived. And examples of that are hydrocodone, which is sold as Vicodin, oxycodone, which is the ingredient in OxyContin, as well as fentanyl, which is a very powerful opioid that people say is about 50 times stronger than heroin and has sort of infiltrated the drug supply.
Kate: I use the term “opioid use disorder” for the most part. And the reason that I do that is that it’s the disease and this is the term that’s used in the manual that doctors use to diagnose this disease. It’s the same thing as opioid addiction. But just to emphasize the fact that this is a disease, I generally use the term opioid use disorder. There are some terms that I do avoid. You’ll hear me say “person with opioid use disorder.” And when I say that, I think that’s maybe the term some people would equate with drug addict or heroin addict.
Kate: So those are terms that I avoid and I’ll talk a little bit later about the importance of language and why I use certain terms and not others. And then the last term that you’ll hear is “medication-assisted treatment,” and that just refers to the medication that is used to treat opioid use disorder. I’m not really sure why they call it medication-assisted treatment, because when they give you insulin for diabetes, they just call it your medication. But it’s called medication-assisted treatment. There’s a couple of drugs, methadone, buprenorphine. And these are really the standard of care for people with opioid use disorder. So that’s basically the terminology I’m going to be referring to that might be unfamiliar while I tell this love story, as I call it.
Kate: So I’m going to start at the beginning with the first time that I fell in love. I was 16 years old and it was definitely love at first sight. I remember walking into the hospital room in the maternity ward and there she was, the object of my affection, asleep in a bassinet next to her mom, my sister Madeleine, who I thought was the most beautiful baby in the world. When I look at that photo now, she was actually a little splotchy, and rash-y, but at the time I thought she was perfect, and she was in fact perfect.
Kate: To tell this love story, I’m gonna have to talk about some of the eleven thousand one hundred and forty eight days that came after that one, the day I fell in love for the first time, the day my sister was born. But part of me would just like to end there. I had a sister and she was perfect because by the time she died, so many people, including Maddie herself, saw my sister as broken. And it’s true that her addiction did in many ways break her, but she was also perfect and we would give anything for more of those days.
Kate: And now you know that I’m about to subject you to a family photo slideshow. The reason I put this photo up is because I just think it’s emblematic of who Maddie is. This is her. She has a lemonade stand at the end of our street and it’s your kind of typical lemonade stand side. And she says lemonade, 50 cents. She’s got some good marketing. Yummy. But over there in the corner of this picture, I don’t know if you can see it, she says, I love you people. And I just think that exemplifies who Maddie was. She loved you people. She could and would talk to anyone. She’d love to act and be on stage. She had a beautiful singing voice.
Kate: And, you know, I have two sisters. I have another sister, Maura, who’s much closer to me in age. And she would get so mad at me if she knew I was saying this. But Maura always says that if we weren’t sisters, we wouldn’t be friends because we’re just really different. We talk to each other on the phone every single day. But I’m not sure we would have found each other in this world. If I wasn’t related to Maddie, I would have wanted to be her friend. You know, she’s the kind of person you want to sit next to at a party. She’s kind of a person who starts talking you on the bus and you’re actually glad, not scared. So obviously, I could talk all night about how much I love my sister. But honestly, she’s so unique and special to me and to my family. But she’s not unique. You all have a Maddie. You have somebody that you’re close to in that way and you love in that way.
Kate: And, you know, I’m not really here to talk about how and why I love her. I’m here to talk about the fact that my sister also fell in love when she was 16 years old. The first time Maddie fell in love, it was not with a baby or a boy or a girl she met at school. She fell in love with a pill she took at a party. She was 16 years old the first time she took OxyContin and she fell in love with the way that pill made her feel. So she continued to take Oxy, as they’re called, until she had developed an addiction that she could no longer satisfy with expensive black market pills. And she began using heroin. My family had no idea what was going on. Maddie started to get into some trouble. She was smoking pot. She wasn’t doing well in school. But my sister Maura and I were terrible teenagers. I dropped out of high school. My sister Maura did all the drugs. So I think there was a sense, you know, my parents were intervening, but I think there was a sense that she would grow out of this. We had grown out of it, but she didn’t grow out of it.
Kate: Maddie was 20 when my mom found her works beneath the bathroom sink. So it was the syringe she used to inject drugs and the spoon she used to dissolve the heroin. And with that discovery began a decade-long nightmare that ended with my sister’s death. Last year, I refer to it as a nightmare, but it’s a nightmare that really changes shape over time.
Kate: I think this is one of the things about addiction that I didn’t understand at the beginning, because at the beginning there’s all of this drama and urgency and action. And after a while, it becomes this kind of drudgery. I think both for the person who’s addicted and for the family. You can’t sort of react the same way in year one as you do in year 10. And there’s always this fear underlying everything. And there’s that cliché of the phone ringing. And you’re worried that somebody is calling to tell you that she O.D. and somebody dumped her body in front of the E.R. or she was murdered and they found her body in a ditch. But what you actually get are all these other phone calls, “Hey, I need a ride to rehab.”
Kate: “Hey, I’m in jail. I need bail. Hey, I’ve been kicked out of rehab. Can you come pick me up? Hey, I’ve been kicked out of the sober house. I’m in the hospital.” Those are the phone calls you’re actually getting. And it’s also, I think, drudgery for the person who has addiction. At the beginning I had this understanding of her addiction. She was like getting high. And it seemed like, you know, almost like she was partying or something like that. What she was doing was trying not to be sick. I mean, she used not to be sick. And so I think there was this, you know, like everybody else has the grind of their job. When you’re addicted, the grind was getting up, getting doing what she needed to do to get the money, to get drugs. And so that was the drudgery for her. My mom and I were talking recently about I don’t know if you’ve heard of people talk about the five stages of grief. And we were saying, you know, they’re like denial and acceptance and anger or something. And we were saying there should be a sixth stage of grief, which is regret, because since my sister died, I have felt such profound regret about the things that I didn’t know about addiction when she was alive. I think that’s really a lot of what I’m going to talk about tonight are the things that I’ve learned and that I wish I had known when she was alive in the past year and a past couple months, especially in the lead-up to the anniversary of her death. I really wished that I had a time machine so I could go back and do things differently. Knowing what I know now and then, I think, OK, maybe this information can be a time machine for somebody else’s family so that they’re not wishing that they could go back, that they instead are having this information going forward and can do things differently.
Kate: So one of the things that I really wish I had known early on in my sister’s addiction was that on average, this is according to John Kelly, who’s a doctor and Harvard researcher. On average, it takes a person with opioid use disorder eight years and four to five treatment attempts to achieve one year of remission from their disease. I had no idea. I mean, that’s a long time. I didn’t really know any statistics or have any information when my sister first started using drugs. We knew she was using heroin, which was like 11 years ago. And none of the systems and institutions that she passed through as a result of her disease seemed to know this fact. Either that it would take her eight years and four to five attempts of treatment if she was lucky, if she was average, to achieve one year of sobriety. And I think those systems and institutions still don’t reflect this fact. There seemed to be an expectation on the part of virtually every person and every system, including my family, that my sister immediately get and stay sober and that anything short of that was a failure on her part. The other thing that I wish we had known about was medication assisted treatment, which is what I was talking about before, buprenorphine and methadone, which are two forms medication assisted treatment.
Kate: You’re 50 percent less likely to die if you’re if you have opioid use disorder and you are on MAT. So I had no idea even what these medications were. When my sister first started going into treatment and she would go to rehab after rehab, and if she was lucky enough to go to a place that offer medication, they would usually just use it to detox or so they would use it while they were giving her buprenorphine and then when she was done, you know, she would leave if she was lucky enough to go to a place that understood this was good long term treatment for people with opioid use disorder. It was impossible to find a practitioner who would prescribe to her when she got out. It’s still hard to get these medications. Doctors can prescribe, you know, if you’re an M.D.
Kate: As far as I know, you can prescribe virtually any drug. You can definitely prescribe opioid use-based painkillers with abandon. But to prescribe buprenorphine, you have to get a waiver. You have to do an eight-hour training. So they’ve created this really big barrier and there’s no extra scrutiny for these doctors. Methadone can only be dispensed at federally regulated clinics. Only a third of addiction programs offer them. But at the time, you know, we didn’t even know that this was a really good thing for our sister to be on. So we weren’t focused on it. We weren’t pushing for it. We weren’t advocating for it. And most of what we were learning, we were learning from these rehabs she was going to that were, you know, a lot of which were abstinence based, meaning, you know, they didn’t advocate for using anything and they would refer to MAT as a crutch.
Kate: And I talked to a doctor named Peter Park, who is actually from Wilmington, this year. And he had the best response, I thought, to the fact that, you know, people refer to medication assisted treatment as a crutch. He said that’s the perfect analogy. It’s a crutch. You break your leg. We put a cast on you, you’re non-weight-bearing on crutches until your bone heals. And then we remove the cast and you get off your crutches. Duh. I don’t know why that’s a criticism. It’s a crutch, like. Great. But at the time there was this really negative perception and people would say that if you were on medication, you weren’t clean. So my family would drop everything to drive my sister to the same 14 day rehab that she’d been to twice before and hadn’t worked. But we weren’t pushing for her to get medication. We were just pushing her to be, quote, clean. And in the absence of meaningful treatment, my sister didn’t get clean. Her addiction intensified and so did the things she did it in its name. She did all the things: she stole from her family and from strangers. She trafficked and dealt drugs. She traded sex for drugs and money. And so many horrible things happened to her as well. She was arrested and incarcerated multiple times, including at Rikers Island, New York. She contracted hepatitis C from injecting drugs.
Kate: She was sex trafficked twice that my family knows of. And we just did not know how to help her. We really only knew of one option and that was rehab. So we supported her to go to rehab again and again and again and again and again and again. We watched as these rehabs didn’t work. And the other thing we did was love her. I am not religious, but I believe in love the way I think other people believe in God or Allah or science or medicine. I do believe in science and medicine as well, don’t worry.
Kate: But I believe that all of these things have the power to transform and heal. And I think I really believed that if I loved my sister enough, she wouldn’t die if I could love her enough. She would not just survive. She would make the life for herself that I knew she could have a life where she was sober and happy and stable and safe. My family and I pushed her to have that life. We pushed her to be the person we knew she could be. And anything short of that, we kind of viewed as failure.
Kate: She came close to that life many times. The closest was after she had her son, Aiden. She tried so hard to stay sober after she had him, harder than I’ve ever seen anyone try anything. But as anyone who has had a baby knows, there is so much pressure and it’s exhausting. And she also had all of this trauma that wasn’t being addressed. And in hindsight, I realize she must have had terrible PTSD. And then on top of having a baby, she was also having to get to the clinic to get her medication because that’s where it was dispensed. She had transportation issues and then things that I think seem so simple to the rest of us, like grocery shopping and managing a bank account or things she just really never done in her adult life because she’d spent it in the throes of this disease. But we and all these systems that she was interacting with basically expected her to go from being homeless because of injection drug use to functionally parenting a special needs kid. And not shockingly, it didn’t work.
Kate: She relapsed for the first time when Aiden was six months old. He went to live with our sister, Maura. She went to rehab, got sober, got on track as quickly as she could. I mean, she got on track very quickly. But at DCF things move pretty slowly. So it’s six months before she got her son back. And then she and her son and her partner had a year of I think was probably the best year of her adult life. She loved that child so much. And just, you know, mothering transformed her. I think loving someone the way she loved him transformed her, but they relapsed. Eleven months later, and with DCF, when you relapse the second time, I think of a young child, they really want to now have that child have some, quote unquote, permanency. And so this time when she lost custody, the state moved to terminate her parental rights so he could be adopted.
Kate: And that eventually happened. She terminated her own parental rights and within five months she had died of a heart infection called endocarditis while incarcerated in Springfield, Massachusetts.
Kate: So after Maddie died, my family decided that we would, you know, be honest about her story in her obituary, and we did that for a few reasons. Part of it was because we had just seen, including in the hospital while she was dying, just the stigma and judgment on the part of doctors is really intense. And we wanted to help reduce that for people.
Kate O’Neill: Until the second my sister drew her last breath, I fully believed she would survive. And so I think we wanted to extend the hope that we had for Maddie, for other people who have this addiction. And we also wanted to ask people who work in these systems for empathy and to show compassion and treat people with addiction with dignity.
Kate: My family paid to place the obituary in a couple of newspapers, the Burlington Free Press and Seven Days, which is the alternative weekly in Burlington. And my sister Maura and I put it on Facebook because we thought, you know, Maddie’s friends aren’t gonna read the paper and our friends don’t read the paper. And a friend of mine tweeted it. And then a writer from The New York Times retweeted it, and then it went viral. And it’s now been viewed by more than 4 million times on the Seven Days web site alone. And I’ve been asked so many times why I think it went viral or what about it spoke to people. And I just don’t have an answer for other people. But what I do know is that in spite of the fact that my sister’s struggle was part of a national epidemic, I felt terribly alone when she was sick. I think my family, we all felt terribly alone. And I know that Mattie felt terribly alone. I knew intellectually that what we were going through was being experienced by millions of others, but it still felt so lonely until she died.
Kate: And so what I think that obituary did was it served as a form of connection for people. You know, I don’t know why it went viral or what it did for other people, but it served as a form of connection for me and for my family. It was this realization that we are not alone. This is happening to our brothers and sisters and mothers and sons, to our coworkers and neighbors and best friends. Even if you are one of the two out of three people who doesn’t believe you know somebody with this particular disease. Opioid use disorder, addiction touches everyone. And I think there was something about Maddies obituary that was a reminder of that. This is happening to all of us. We are not alone. So Seven Days, that alternative weekly newspaper that all of a sudden had people flooding its website, I believe its website actually crashed. So this paid ad, you know, in obituaries, a paid ad for a newspaper had exponentially more volume than any of its content. You know, that it produces and has produced for years. So I think they realized, you know, that there was an appetite for these kinds of stories. And they invited me to spend a year covering the opioid epidemic in Vermont. I’m nearing the end of that year right now. I’m not a journalist or a reporter. I was working in communications at a tech company when my sister died. And I have learned so much this year. I mean, and, you know, everything that I’ve learned is, you know, it’s all the things that I wish I had known when my sister was alive. I’ve talked to people all over the state. I’ve covered issues that my sister experienced personally, like sex trafficking and using opioids while pregnant, DCF.
Kate: I’ve also covered things that, you know, she didn’t experience, like what it’s like to be in a rural community and have addiction. You know, I talked to people who have addiction and I also talked to doctors and lawyers and social workers and rehab directors and scientists. I talked to families. And, you know, I noticed that everybody’s story is unique. What they’re working on is unique. But, you know, virtually everybody, the one thing that was in common to virtually all of these conversations was stigma. Everyone talked about stigma and shame and judgment, people who are experiencing it personally because they have addiction, people who are working with people who have addiction or witnessing how the stigma impacts them. Stigma is such a big deal when it comes to opioid use disorder that the American Medical Association made, quote, “removing stigma one of six actions that physicians could take to end the opioid epidemic.”
Kate: And when I think about stigma, I think so much about language. You know, I am a writer and language is so important. And so this is sort of going back to what I was talking about at the beginning. Language is really important around it because how we refer to people doesn’t just impact how they feel, it impacts how they’re treated. So a study at the research, the Recovery Research Institute, which is out of Mass General in Boston, asked participants how they felt about two people who were, quote, actively using drugs and alcohol. And one person was referred to as a, quote, substance abuser. And the other person was referred to as, quote, having a substance use disorder. They were given no other information about these individuals. And this is what’s called person first language. So a substance abuser is somebody who’s being defined by their disease. Right. Your that’s what you are. You’re somebody who abuses this substance. When you say a person having a substance use disorder. That’s one element of who they are. So you have substance use disorder and you’re also really funny and you’re bad at math and you like chocolate, right? So this is one element of who you are.
Kate: But what this study found was that participants believed that the, quote, substance abuser was much less likely to benefit from treatment and more likely to benefit from punishment than the person with substance use disorder. They believed that the substance abuser was more likely to be socially threatening. They believed they were more likely to blame the substance abuser for any problems they had related to their disease. And they were more likely to believe that the substance abuser should be able to fix their problem without help, which is nuts. I mean, this is based on some words. The other thing that’s nuts is that half of the people in this study work in health care. I mean, these were people who should know better. And these are people who people with opioid use disorder are going to for help. You know, numerous studies have shown that stigma is a barrier to people getting medical and social services as well as treatment for their disease. So stigma is literally killing people.
Kate: And which brings me back to this fact. So people that I talked to who work professionally with people with opioid use disorder, they love to use this term: “We’re going to meet people where they’re at.” Which I think is a really important thing. Looking at where people are in their disease cycle, treating them with dignity no matter what.
Kate: But the fact is that this is a disease and we know it takes people eight years to achieve one year of remission from this disease. So that means that for a good part of those eight years, people are going to be actively using drugs. So how do we keep them safe during that time? How do we meet them where they’re at? One where they’re at is actively using drugs, which is a hugely dangerous activity. One hundred and thirty people die every day in the United States from ODing on opioids. And for the first time in U.S. history, you’re more likely to die of an opioid O.D. than in a car crash. Those stats don’t even include people like my sister, who, like I said, died of a heart infection or the many other people who die of related causes, not from an overdose or the people who live in misery every single day. So if we know that people are going to be using drugs for a lot of this time, that on average it takes to get sober. How are we really going to meet them where they’re at?
Kate: And this brings me to another thing that I really wish I’d known about when my sister was alive. And it’s something that’s called harm reduction. Again, I feel like I’m revealing to you what an idiot I was before a year ago, but I had literally never heard of the term harm reduction before my sister died. It’s actually something that we all engage in or we hopefully all engage in. Every single time we get in our car, you put on your seatbelt, right? That’s harm reduction. You still might get in a crash. You still might be killed in a crash. You might get hurt in a crash. But you put on the seatbelt as a way to reduce the potential for harm. And it’s the same thing with drug use. Harm reduction is way of saying: OK, this is a really dangerous thing that people are doing. How are we going to reduce the potential harm around it?
Kate: And it’s a public health movement. And a lot of ways I think some people think there are social justice components to it. But there’s a lot of principles around harm reduction. And these were a few that were really important to me and my understanding of harm reduction when I first started learning about it. Harm reduction accepts, for better or for worse, that drug use is part of our world. Rather than ignore it or condemn it, it’s happening. So how do we minimize the harmful effects of that drug use? It also acknowledges that there is a continuum of behaviors related to drug use, right? You’ve got total abstinence over here. I don’t touch a drop or snort a speck of anything ever to really severe addiction over here. And there’s also ways of using drugs that are clearly safer than others. So if you’re thinking about opioids, using a prescription opioid pill is probably the safest. You know, swallowing it is probably the safest way to use an opioid. You can still O.D. and people do all the time. But you know exactly what’s in there. It’s a regulated substance. If you crush and snort that pill, it’s a little more dangerous, right. Because now it’s more potent. It’s going more directly to your bloodstream, more dangerous to use. If you snort heroin, that’s more dangerous still, because when you buy heroin off the street, you have no idea what you’re really buying, right? I talked before about fentanyl, which is 50 times stronger than heroin. Carfentanil is another drug that’s infiltrated and is used to cut heroin and that’s five thousand times more potent. And that’s why a lot of people believe people are dying at such a crazy rate right now. So that’s more dangerous still. Now you’re using a substance. You have no idea what it is, but there is way to mitigate some of that harm, right? There are test strips that you can use to test your drugs. You how potent they are and make decisions. OK. I’m not going to use this much because it will kill me. Injecting heroin is more dangerous still than snorting it. You know, if you use syringes that are not sterile, if you don’t swab your skin, you can get disease, you can get abscesses. But again, there’s way to mitigate that harm. You can help by providing people with sterile equipment. You can make sure that people have Narcan so that you know, and that goes for all the opioid use, Narcan, which is the opioid overdose reversing drug. So that’s sort of what, you know, the second principle of harm reduction that I thought was really important and the last that I think really changed my thinking about it was that it doesn’t condone or encourage using drugs, which I think is how I would have thought about it in the past when I was thinking about my sister, like, well, if you’re giving her, sterile syringes or works, you know, that’s encouraging her. But it’s not doing that at all. It’s not attempting to minimize the harm of drug use or ignore it or the danger to people who use drugs or the communities in which they live in. It’s actually just to reduce that harm. So these are some examples of harm reduction.
Kate: The first is medication assisted treatment, which we talked about before, and that can be used to help people abstain from using illicit opioids. But it can also be used when people are actively using opioids and this was something I didn’t understand either. So John Brooklyn, who’s the director of the Chittenden Clinic in Chittenden County, which is sort of the first methadone clinic in the state, he’s said if he’s got a patient, they’ve got thousands of patients and a lot of them are using drugs while they’re on buprenorphine. And his theory is, OK. So if somebody is injecting drugs three times a day, seven days a week, and they get on buprenorphine and maybe now they don’t inject drugs Monday through Friday, they go to work and they’re only using drugs on the weekend.
Kate: That has hugely reduced their risk of getting an infection from injecting or overdosing. So that is a form of harm reduction. Another form of harm reduction is Narcan. And this is Narcan. Two, always carry two, this is the overdose reversing drug. So carrying this if you use drugs is if you use opioids is really important. They say, you know, don’t use alone. So this is as an example of harm reduction: carrying it.
Kate: And the health commissioner in Vermont has issued a blanket prescription so any Vermonter can go into any pharmacy and get Narcan. I live in Philadelphia and like three or four days ago, somebody died on a train platform and there were literally two bike cops there who did not have Narcan and somebody else on the train platform did have it and revived them.
Kate O’Neill: These other two I’m going to go into a little bit more detail about and one of them is called Syringe Services Programs. I don’t know why they give these things such like complicated un-snappy names. So syringe services programs and supervised consumption sites. Syringe services programs do a few things. I didn’t know what they were. I think that before my sister died and I learned so much this past year, I’d heard of needle exchanges, which I thought was a place people could go get clean needles. As I was calling them at the time, which they are. But they’re also so much more. Syringe services programs are places that people can get those test strips. Where I was talking about they can get Narcan, they can get tested for HIV and Hepatitis C, they can get referrals to rehab or to a doctor for mental health care. It wasn’t until I started interviewing people for stories this year that I learned about the program in Burlington, which is the city where my sister lived, like I did not know about the syringe services program in the city where my sister, who was an injection drug user, lived. It’s called Safe Recovery. And as I talked to people across the state. So they have clients from every county in Vermont who come up there. And people again and again would say this is the one place when they were actively using drugs where they felt safe and cared for and not at all judged. It was literally the only place where they felt loved.
Kate: My sister died of endocarditis. Clean syringes and alcohol swabs literally could have saved her life. I mean, I would give anything to have instead of like carting her to rehab after rehab, have a conversation with her where I said, “Hey, you know, if you’re gonna be using right now, can you just, you know, do you know about Safe Recovery, which I’m sure she knew about and how we’re going to stay safe?” “How are you taking care of yourself?”
Kate: But these are some of the things that syringe services programs do, which I was not aware of and which were kind of surprising to me. They actually reduce drug use. People who used syringe services programs are five times more likely to enter treatment and more likely to reduce or stop injecting drugs, which seems counterintuitive. But when I talk to people in Vermont, it actually makes sense. When people are feeling so isolated and disconnected and judged by their doctor and then they have this place where they can go and they feel safe and they have these people that they have a relationship and they talk to so many people I talk to who have been in recovery, like gotten recovery through the syringe services program, like going in there. And then they would be like, Grace – that’s the director now – like, oh, Grace helped me get in and blah, blah, blah. So it makes sense in a way, even though it seems counterintuitive at first, they reduce infections like HIV and Hepatitis C, obviously through helping people with access to sterile equipment. They also reduce overdose deaths. Safe Recovery distributed more than thousand doses of Narcan between 2013 and 2018. Before I came down, I googled syringe services in Brattleboro and it looks like there’s one place on Grove Street that on Tuesdays between 10:00 a.m. and 2:00 p.m. offers syringe services. So that’s four hours a week.
Kate: And I mean, when my sister was actively using drugs, she often didn’t know like what month it was, let alone what day of the week. And oh, I have to be there at 10 a.m. for the four-hour window that the syringe services program is open. And then what if you don’t live in Brattleboro or you live in Vernon or, you know, Bellows Falls. So what are you doing then?
Kate: I think that even if you’re not moved by this idea. Because it’s a form of caring for people or health care. I think there’s a really strong economic argument for it. And I know that a lot of people are talking right now about the economics of the opioid epidemic. My sister died of endocarditis, which, like I said, is an infection of the heart lining. Between 2013 and 2017 there was a one hundred and twenty percent increase at UVM Medical Center of drug related endocarditis. They actually think that that number is much, much higher. According to this medical center spokesperson I talked to, they don’t code it very well. So there are a lot of cases of endocarditis. There are probably drug related, but they just didn’t get entered into their system that way. But nonetheless, that’s a huge increase. And according to the medical center, it costs between one hundred thousand and six hundred thousand dollars to treat one case of endocarditis. There I met a woman in my reporting this year who was hospitalized. She had two different heart surgeries. You know, she’s on Medicaid. This is extraordinarily expensive.
Kate: So it costs between one hundred and six hundred thousand dollars to treat. The annual budget of Safe Recovery is three hundred and fifty thousand dollars. Like you do the math. If you prevent one case of endocarditis over the course of a year, you’re pretty much paid for the budget of syringe services, not to mention all the people they’ve prevented from ODing, all of the other diseases that have been prevented.
Kate: So the other form of harm reduction I’m going to talk about is supervised consumption sites. And these are places where people can go and use illegal drugs under medical supervision. Again, never heard of them while my sister was alive. And honestly, I think the idea of them would have terrified me at the time because the idea of my sister injecting drugs terrified me.
Kate: And it was really just the last thing that I wanted to think about. But me not thinking about it didn’t stop it from happening. She was doing it anyway. And you know, you all not thinking about it is not stopping it from happening. You know, people are injecting drugs in the library bathroom here. I have no doubt there. You know, in the alleys behind restaurants in downtown Brattleboro and in the woods by your house, in the stairwell, in the parking garage, it’s happening. So there’s 120 supervised consumption sites in 10 countries around the world, mostly in Europe and Australia and Canada.
Kate: And they’re illegal in the United States in spite of the fact that more than 100 peer reviewed studies from around the world have shown that they basically do all the same. This is the exact same slide as the same as the syringe services slide. You know, they increase the delivery of social and medical services. There’s never been an O.D. at a supervised consumption site. They also save money, you know, and the reduction in disease, preventing overdose, the need for EMT is to respond to overdose.
Kate: And they also reduce public disorder and increase public safety in the neighborhoods where they exist. So the only difference between this slide and this slide is the citation at the bottom.
Kate: So this data I got from the Centers for Disease Control and Prevention, which is our nation’s public health institution, and this is from the American Medical Association. And the only reason I point this out is because I just want to make it really clear that these aren’t like left wing fringe pro-drug groups. You know, the AMA is the largest association of doctors and med students in the US. And in 2017, they called for the pilot of supervised consumption sites in this country as a way to help stem this epidemic.
Kate: So the other thing that I think that supervised consumption sites do and sharing services programs do is that they tell people we care about you. They provide these real public health services. But they also say to people, we love you. We care about you. We want you to live. You know, there’s a saying, you can’t recover if you’re dead.
Kate: Again, my sister died of a completely preventable, treatable infection while she was incarcerated. That infection was not treated in part because of a fundamental lack of compassion on the part of individual correctional officers and also a criminal justice system that just doesn’t recognize that this is a disease. I mean, a culture that doesn’t recognize largely that opioid use disorder is a disease.
Kate: She was arrested. She asked again and again for help and she didn’t receive it till it was too late to save her life. And they finally brought her to the hospital. That infection had spread in a way that she could not be saved.
Kate: This was the photo of her that was printed with her obituary. That’s her son on her back. Again, this is Maddie on a really, really good day. And I think that when that obituary went viral, this is a face it’s really easy to empathize with. Right. This is Matty when she’s well and at her best. I think it was a lot harder to empathize with Matty when she was panhandling downtown or trying to scam you out of money.
Kate: This is Maddie. This is her mugshot from when she was arrested in Springfield. And so I think this is the person that we have to have empathy for. This was the person that those correctional officers, those cops couldn’t bring themselves to empathize with. So I think it’s really important to look at these faces.
Kate: So I’m going to end with a quote that somebody sent to me a couple months ago and that I really love. It’s the opposite of addiction is in sobriety. It’s connection. And so I’ve been thinking a lot about connection and just wondering what would happen if we all extended our hands and offer that connections or the connection that my family got after my sister died and that obituary went viral.
Kate: What if instead of stigmatizing and judging people with addiction, we loved and supported them, even if they’re not sober or trying to get sober? What if we viewed people in the throes of their addiction who are actively using drugs every day as people with the disease who are worthy of our love and support? Because that’s what they are. What if we said to them, we as individuals and as a culture, we want you to be safe. We value your life and we want you to live. Here are the evidence-based tools you need to stay alive and if and when you are ready to stop using drugs, we will help you do so because you were worth it.
Kate: I fell in love with my sister Maddie in the hospital room where she was born, where I held her and kissed her, sang to her and whispered my love in her ear. I was so full of hope for her future and couldn’t wait to bring her home. Eleven thousand one hundred forty eight days later, in different hospital room, I again held her and kissed her. I sang to her and whispered my love in her ear. I was so full of hope for her future, and I could not wait to bring her home. What if we looked at people like Maddie when she was sick, and we extended our hands, and we said: We love you. We’re right here. Hold on.
Thanks for listening to The Portable Humanist. Visit our website at vermonthumanities.org/podcasts for a transcript of this episode, and for more information about Vermont Humanities.