Transcription:
Addressing the Stigma Surrounding Opioid Addiction

Melanie Cole (Host): Welcome to Back to Health, your source for the latest in health, wellness, and medical care. Keeping you informed so you can make informed healthcare choices for yourself and your whole family. Back to Health features, conversations about trending health topics and medical breakthroughs from our team of world renowned physicians at Weill Cornell Medicine, I'm Melanie Cole, and today we're talking about opioid overdose treatment and Naloxone rescue kit or Narcan training. We have a panel today with Dr. Jonathan Avery. He's the Vice Chair of Addiction Psychiatry at Weill Cornell Medicine and Robin Kellner and John Sicher. They are the mother and stepfather of Zoe. They're here to share Zoey's story today. Thank you all for being with us today. Robin, I'd like to start with you. Can you tell us your story? Tell us Zoey's story.

Robin Keller: Okay. Zoe. Well, she was wonderful. She was smart and beautiful inside and out, and Zoe cared deeply about others. Zoe would've made a difference in today's world, but Zoe was in pain and she experienced childhood trauma, but she buried it. It was painful and it was so hard for her to look at, especially as a child. She was in and out of therapy, but that doesn't always work. And she wasn't really ready to look at her pain and there was so much that I didn't know and I didn't understand. And Zoe had a non-fatal drug overdose her first year in college, and she was in Florida and I was visiting her.

The experience that we had in that emergency room, I believe set a tone for what happened in the next few years. And then Zoe died from a fatal drug overdose. In the emergency room, we were met with fierce judgment. Stigma was so present and Zoe was treated as someone who was taking up space rather than a patient who almost died. We often don't see mental health issues and substance use disorders, especially being treated as the serious medical health problem that they are. Well, at least that was the case back then.

My hope is that things are changing and that was the case with Zoe. The questions about why Zoe did what she did, why she took what she did, those were absent. The only questions were, what did you take? How much of it? And I understand that was important, but even many hours later, the why's were never asked. It felt like Zoe was taking up space, that someone who was really ill needed, that's how she was treated. Zoe's health, ebbed and flowed. And there were times when I thought we were out of the woods only to realize that things with Zoey were still very precarious.

And then on April 9th, 2007, Zoey came home after being with her friends. She went into her room for the night with a cup of tea. I found her the next day in her bed. She had taken drugs that slowed her heart and then stopped her heart, and she passed away.

Melanie Cole (Host): Robin, this is heartbreaking. As a mother, I just can't even imagine. What that must have been like for you and John as Zoe's stepfather and as someone who loved her. How were you dealing with this? The substance use Robin's frustration, which she just voiced so beautifully with the help and advice that you were all getting about Zoe.

John Sicher: It was a time of terrible, terrible heartbreak. The worst heartbreak, of course, was watching Zoe struggle, but the other heartbreak was watching Robin and I participated trying to find help for Zoe, trying to find the right kind of treatment. Back then in 2007, and I'm not sure how much has changed today. Trying to understand where and how to get treatment was very difficult. Talking to well regarded doctors here in New York and around the country, we were met with very, Punitive suggestions, like have her arrested and it was a time of terrible heartbreak. And I hope and think things are better today than they were in 2007, but I fear they're probably not much better.

Melanie Cole (Host): Thank you both for sharing this story and Dr. Avery. We know that there is a mental health epidemic right now, especially among our young people. I'd like you to speak about the current state of the opioid issue that we are seeing. Why are we calling that an epidemic as well?

Dr Jonathan Avery: No, thanks for having me back and thanks to John and Robin for sharing Zoe's story. And, it's multiple epidemics as you sort of described and as you heard with Zoe's story. It's trauma and mental health. And the sum of all that is that it's led to a really terrible opiate epidemic. It has been persistent for a really long time now, and the latest data is staggering. here in New York City we see about 10 deaths a day, a hundred thousand over the last year. And it's something that we think at times that's gonna get better, that's gonna improve, but it just seems to be getting worse.

So right now we're in the third wave of the opiate epidemic, which is characterized by fentanyl, contaminating a lot of substances. So we often understand what opioids are, they are the pain medications, the heroin. But these days there are very potent opiates, most notably fentanyl that are pressed into all substances of abuse or many substances of abuse rather. And so you can find fentanyl pressed into cocaine or pills marked as Xanax or Adderall. And so, in New York City about half the overdose deaths are people trying to avoid opioids, but getting accidental exposure to them.

And we say these days, basically anything that doesn't come from a pharmacy, carries the risk of fentanyl contamination, and we think that's a big reason why these overdose deaths are still so high, is that many people are getting exposed even when they're trying to avoid opioids.

Melanie Cole (Host): Robin, what did you learn? You mentioned it a bit when you were talking about how the hospital and the whys that weren't answered. What do you feel that you learned about how stigma can exist? Even within the highly specialized medical community that works with people with substance use disorder and opioid addiction?

Robin Keller: Well, I think, what I realized really unexpectedly was that people who have struggles with substances and people with substance use disorder, are often viewed as having a moral failing. That they could do better than they can, that they can just try harder. And there's enormous blame placed on the patient. God forbid, if Zoe had had cancer, no one would be blaming her, and we would've experienced a lot of support and compassion. When Zoe started down this road of misusing substances, even friends and family basically their attitude was, well just tell her to stop. she should try harder, just punish her.

And I understood that from people without the information. What really surprised me was the kind of advice and guidance we were getting from people in the medical world, people who specialized in this area. One would think that they had all the information and therefore would be able to give us the guidance that we needed. And I think, for parents, you go into a health issue like this with your child and because of the attitude surrounding it, I think we go into it feeling a bit ashamed and embarrassed.

We feel that our kids shouldn't be doing this, so we go into it with a disadvantage and rather than being able to push back on things that really don't make sense. Some of the advice, like John was saying, some of the advice that we got, let her hit rock bottom, have her arrested. I mean, who would say that to anyone? No less a mother whose child is really sick. And because we were going into this with so much shame and embarrassment, that pushback was hard to find.

Today if a doctor says something to me that I question, I do question it. Back then, I didn't have the wherewithal to really question some of the outrageous advice that we were getting. Somehow I think I felt like we deserved to be treated the way we were, and that's just terrible and unacceptable.

Melanie Cole (Host): Certainly is, and slightly infuriating too. I mean, as a mother, I can hear in your voice that passion, that frustration with what those terrible things that people were saying. Now, John and Rob and both of you, how has this experience inspired you to provide more resources for the community? Because even me just sitting here, listening, I'm now thinking about exactly that and the medical community and the ways that these kinds of stigmas had been looked at, and we certainly hope they're being looked at better today as we're recognizing it more. So, John, why don't you speak on how this experience inspired this?

John Sicher: You know, after Zoe died, we were trying to figure out a way that Robin and I could spend time and some of our resources to help save lives. And this goes back to 2007, and Robin did a lot of research back then, and at least to my knowledge became an early advocate of something called harm reduction. And what harm reduction means basically is let's try to figure out ways to keep people from dying, keep people from injuring themselves. So, We're very fortunate because Weill Cornell is our hospital and our doctors are at Weill Cornell.

We're very fortunate to meet Dr. Avery and we began working with him. On his efforts on fighting stigma on getting Narcan out into the community, we were, helpful in gettin g Weill Cornell to put Narcan on their ambulances many years ago. And, I think Dr. Avery will, I'm sure, speak to this later, but I think that stigma, reduction and distribution of Narcan. More recently, fentanyl test strips is where we've basically spent time and resources and we believe that they are saving lives. And we can't think of a better way to honor Zoe.

Robin Keller: And I think also, part of our motivation is I think as parents it's very, very hard to realize that this could be your child. And I certainly was in that place before this happened. and part of our being out there in front of people and putting a face to this because it looks like Zoe, but it looks like a lot of other people. It looks like anyone anywhere. Part of what we're trying to do is to get people to realize early on that this can happen to anyone anywhere, and I think if you are starting from that place, then you're ahead of it.

As opposed to, like with us, I was so stunned and taken aback that this could have happened to us. So what we're trying to do is be honest, be open, be out there and let people realize that this health issue looks like any one of us.

Melanie Cole (Host): Really what you both have done is so inspiring. And Dr. Avery, I'd like you to speak about Narcan now. Tell us about overdose itself from the medical perspective. What are some of those critical signs of overdose? What are some things that people in the community can look for. What should you do if you think that some, I mean, we've got college kids that listen, we've got all these people. What should someone do if they think someone is overdosing? And then I'd like you to tell us about Narcan and really what it is?

Dr Jonathan Avery: Oh, of course. And I think the key point that John and Robin made was that this can happen to anyone. These overdoses and we can all be prepared and, fight through the stigma that exists to really make a difference. And so, it's important to know what overdoses look like, which is that if you take too much of an opioid or mix an opioid with other substances, you can end up in a state where your breathing slows down. You start turning blue. What opiates do is they basically slow everything down to the point that eventually everything stops.

And the beautiful thing about Naloxone rescue kits or Narcan is though that you don't have to be a detective. And so sometimes it can be hard as you see someone who's not responding to know exactly if it's been an opiate overdose or not. And so, we encourage people to certainly be aware of what the signs are. But the great thing about Narcan is you can give it to someone almost regardless of why they're down, because it's so safe.

And what Narcan does is it is a nasal spray that you spray in someone's nose when they're not responding, and it goes to the brain and it knocks the opiate off the brain. That's been, causing everything to slow down and the breathing slow down and allows someone to breathe. And to be revived. And it's, sort of magical in that way that after 10 seconds and sometimes can happen after multiple administrations if fentanyls there, that it can really save someone's life.

And so, you don't have to be a detective, but you have to have Narcan handy to be able to spray it if someone is non-responsive. And the great thing is if someone's down from a heart attack or have overdosed from another substance, it just does no harm. And so we're encouraging everyone to have these kits, would that have Narcan in them, and to carry them so that they can be prepared.

Melanie Cole (Host): How does someone get these? If you wanted to distribute these on college campuses in places where we might see, many of these overdoses, how are these being distributed?

Dr Jonathan Avery: Yeah, I've been very grateful for John and Robin for partnering with them. We often go around and we tell Zoe's story and we give these kits out around the community here in, New York City. And that's because we at the hospital are in a registered opioid overdose prevention program. And there are these programs, around the country and in pretty much every state. where you just have to go to a local Department of Health or the local Department of Health website, and you can often find places, where these kits are given out for free.

And increasingly you'll see them in all the places they should be in hospitals certainly, but on those college campuses, in schools, in libraries, they really should be anywhere people are because anyone's at risk for these. And since Covid, there's also a. services that even mail them to your home that you can access a Zoom training and they'll send them. So if you just pretty much Google Naloxone rescue kits or Narcan in your area, I'm pretty sure you'll be able to find someone who's able to get them in your hands.

Melanie Cole (Host): And before I give the last words to Robin and John, Dr. Avery, what would you like listeners to know about this epidemic of opioid use disorder that we're seeing? The mental health crisis that we're seeing, especially in our youth right now and since Covid and all, what would you like to tell people about recovery, about the stigma, the barriers to getting that help, to asking for help to loved ones? Like Robin said, nobody seemed to Answer those whys. You're such a great doctor, Dr. Avery, such a learned man and so kind and compassionate. What would you like your message to be about this crisis we're seeing?

Dr Jonathan Avery: Well, I think, hopefully this podcast, the work that we're doing is the beginning of a conversation that can be open and free where we can all talk about substance use. They recommend for pediatricians or for families to Start talking about substance use as early as age nine, and. It's also to start talking about mental health issues and part of that goes to sort of erasing the stigma. This is, as Robin said, something that can happen to anyone. And so everyone needs to discuss it to be aware of it.

And we're doing a lot of work here at Weill Cornell on combating the stigma that exists in places that should be the safest, in doctor's office, among lawyers, among family members. So that, we can hopefully have these open, honest, conversations. And a part of having these open, honest conversations is recognizing that, we all should be prepared with Narcan kits, but also recognizing that many good treatments do exist. And so while Narcan will save a life and, keep you alive, it's not treatment. But there's a lot of great treatments that exist for opioid use disorder for the range of substance use disorders.

And certainly for trauma and mental health issues. And you really need to address them all in as non-stigmatizing way as possible if we're gonna get through this opiate epidemic and this crisis of mental health and get people better. And I'm just so grateful that we can talk about this on this podcast, but also grateful that I can partner with folks like John and Robin to hopefully make a difference as we fight this all together.

Melanie Cole (Host): Well, you certainly have today, and Robin, I'd like the last word to be to you, to other parents and folks with loved ones that are suffering from mental health issues or substance use disorder. Any of the things we've discussed here today, You're just an amazing woman. What would you like them to know about what has inspired you to do what you're doing and help so many and how they can look to recovery and people like Dr. Avery at Weill Cornell Medicine for help?

Robin Keller: Well, One of the things that's inspired me is that I have this opportunity with John to talk about this because I think that there was a time when there wouldn't have been a podcast about opioids and opioid overdoses and Narcan. And none of this would've happened. So I feel as though every time we have an opportunity to speak to someone or speak in front of a group, that that's a sign of hope that things are changing and. I think an important message for parents is that this is a health issue. This is a health issue just like if your child was diagnosed with diabetes, and I think you have to go into it that way.

Otherwise, the judgment and the shame and the stigma really keeps us in hiding and keeps us in the dark and keeps us for asking for help too long. And it's like any other health issue. The earlier you get help, the better your outcome. So sometimes I think it's okay to think the worst because the truth is that, I didn't think the worst. I didn't think that this could be my child. And the worst, and it was my child. I mean, it all happened. So I think that parents have to be prepared it's just like parents are not in denial about disease that could happen to their child.

This is the same exact thing. We have to be open to the fact that, this can happen. It can happen to us. get help. Be hopeful because there is really good treatment. There are doctors like Dr. Avery, who really have the answers and have the compassion, and have the medical knowledge, the tools and I just think that we can be hopeful.

Melanie Cole (Host): Thank you both so much, and Dr. Avery is always, Thank you for being such an incredible guest and sharing your expertise. And John and Robin, thank you so much for sharing Zoe's story today with the public and the importance of. Recognizing these kinds of issues and breaking down those stigmas and barriers. Thank you so much. And Weill Cornell Medicine continues to see our patients in person as well as through video visits, and you can be confident of the safety of your appointments at Weill Cornell Medicine. That concludes today's episode of Back to Health.

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