THE WORLD IS ENDING! Again. Doomsdayers and apocalyptic prophets have warned of coming calamity for millennia. Still, humanity persists. 

This podcast invites entrepreneurs, scholars, community leaders, artists, and many others to envision the end of the world according to their expertise.

Art at the End of the World is a hybrid class and public program series supported by the University of Iowa Stanley Museum of Artand the University of Iowa School of Art and Art History, and taught by Associate Curator of Special Projects, Vero Rose Smith.

Today we welcome Sarah Ziegenhorn, founder and executive director of Iowa Harm Reduction Coalition. Sarah holds an undergraduate degree in geography and biology from McCallister College and has many years of experience in public policy and community organizing. In addition to her advocacy work and non-profit leadership role with the Iowa Harm Reducation Coalition, Sarah is currently pursuing a medical degree at the University of Iowa. 

Music was written, performed, and produced by Gabi Vanek.

Transcript produced and edited by Molly Bagnall, University of Iowa Class of '20.

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VRS: The world is ending again. Doomsayers and apocalyptic prophets have warned of coming calamity for millennia. Still, humanity persists. This podcast invites entrepreneurs, scholars, community leaders, artists, and many others to envision the end of the world according to their expertise. I’m Vero Rose Smith, your host, and this is Art at the End of the World. Today we welcome Sarah Ziegenhorn, founder and executive director of Iowa Harm Reduction Coalition. Sarah holds an undergraduate degree in geography and biology from Macalester College and has many years of experience in public policy and community organizing. In addition to her advocacy work and nonprofit leadership, Sarah is currently pursuing a medical degree at the University of Iowa. Our conversation was recorded on Wednesday, April 8th 2020. 

VRS: So thank you so much for taking time to do this interview and could you introduce yourself and a little bit about your current role?

SZ: Sure, so my name is Sarah Ziegenhorn, I’m the founding executive director of the Iowa Harm Reduction Coalition. Um, for short we go by IHRC commonly and we’re a statewide nonprofit that does advocacy, technical assistance, training, education, and direct services for people who use drugs. So all of our work is really focused on protecting and promoting the health, rights, and dignity of people who use drugs in the state of Iowa. 

VRS: Amazing, and how did you get interested in this work? 

SZ: Sure, so I uh- about ten years ago I was living in South Africa and um- I had a home stay family that I lived with for about a year during my study abroad as an undergraduate and um- in in the neighborhood where my homestay family lived was fairly low income and there were a number of women who worked in the neighborhood as, um, as street based sex workers and so I got really interested as I developed friendships with people in the neighborhood and with the folks that were engaged in this kind of survival economy. I got interested in sex worker health and rights and so when I came back from my study abroad experience, I did a research project on um- on urban transportation project in the Twin Cities, at time they were starting to build a light rail and in this area that had been notorious for people doing outdoor and street based sex work for many many decades and so I was really curious how the street project which many people saw as gentrification is going to impact the health and well being of people who were working outside on the street where this light rail was meant to be built. And so kind of from there everything else sort of flowed and developed really easily. I moved to Washington D. C. after I finished my undergraduate degree and because I had had these these research experiences and done this work in South Africa and in the Twin Cities, on the first day that I started a new job at a DC think tank during health policy work, I had a friend or colleague come up to me and say what are you doing tonight can you commit to do a forty hour training to be a volunteer at the needle exchange program here in DC? and I just having the CDC was like sure why not? I don't have anything going on and the rest is sort of history from there. So I started working with the needle exchange program in DC, providing overnight outreach on a weekly basis, so driving around the city of DC between 10PM and 7AM providing syringe exchange services to folks who inject drugs and then working with the people who do street-based sex work in the city of DC.

VRS: That's an incredible story and such amazing inspiring work. Can you tell us a little bit more about how your training influenced where you are today? So you mention your first experiences in this world of advocating for people who use drugs and people who engage in sex work as part of your undergraduate studies, could you tell us a little bit more about your course of study and then your professional training before you founded this organization? 

SZ: Sure! I completed my undergraduate degree at a private liberal arts college in St Paul Minnesota called Macalester and Macalester is a small school with a number of unique opportunities for individualized study and so I majored in geography which is a really good grounding in social science research methods, especially research methods used in geography and taking a place based approach to thinking about social problems in the world and because people in public health recognized how important place is to shaping people's health and wellbeing, there's sort of a nice synergy with community health and global health work and so I had an interdisciplinary concentration in community and global health that I completed as well as a second major in Biology. So I got sort of a well rounded training in hard sciences and social sciences and then went to work in DC at a think tank applying some of the conceptual and more theoretical training that I’d received. And I’d worked and done a lot of, a lot of social science research in geography as an undergrad and so moving to DC, the think tank that I was working at was a research one it's called the the Institute of Medicine, and now known as the National Academy, or the National Academy of Medicine and so in that role the work that we did was really focused on synthesizing research so that it could be presented to policymakers and then delivering evidence based strategies for public policy change to folks working on the Hill in DC, so people shaping federal policy. So that has been really really helpful training for the work that they do now with IHRC because it gave me a very practical lens on how to communicate about science and how to engage policy makers and build relationships with individuals who shape policy at many many levels and the work that I had done in in my undergrad and also in the five years that I spent at the think tank and made it very clear to me that a lot of times when we think about advocacy work we focus so intensely on the individual people who are making policies through a legislative decision making process but um- in public health and in federal policy work we we understand and we recognize that everybody has a role to play in making communities healthy places to live and so that has been really foundational for me and thinking about how do we achieve better health for people who use drugs in Iowa, a lot of that is done not just by focusing on advocating to politicians or policymakers but connecting with and building relationships with broad stakeholder groups community.

VRS: And what brought you back to Iowa specifically? And was there more of a need here than other places? 

SZ: That's a great question and so I came back to Iowa in 2015 to pursue a medical degree at the University of Iowa and so I have diverged a lot from that path and I plan to finish my medical degree within the next couple of years. But then, I've spent a lot of time working for I. H. R. C. as something I didn't foresee I would do, sort of taking a break in medical school to work it's not very common but when I came- Iowa is my home state where I grew up, I was raised in Iowa city and on farm outside of Muscatine and so when I came back to Iowa I had been living outside of the state for almost a decade but I was really alarmed after about a year of being back, in recognizing what happened during the time that I’d lived elsewhere and so sort of as a teenager I grew up in a part of history in Iowa was rate very common for people especially at youth and adolescents to be using prescription opioids and using pills as something that they did recreationally or at a party with their friends. But by the time in had come back a lot of the people that I knew who had been casually using pills, many of them were dead, many had passed away of overdoses and then many had been incarcerated or many were actively using heroin and so on when I thought about everything I had learned in DC, both working in the needle exchange there and in the federal health policy role that I’d worked in and I knew there was so much great work going on to build community support for people that use drugs and I saw none of it happening in Iowa and so I was alarmed at how far, and I hate to use that this idea that Iowa is behind because it creates an idea that we're all heading in the same direction and that communities don't have their own unique destiny that the EArth is a sort of homogenous place and some places are better in a hierarchy than others but um, when it comes to public health solutions for overdose prevention, infectious disease prevention, substance use treatment, Iowa really was behind and they really are a number of a sort of gold standard approaches to these problems that can be implemented to stop them and that other communities had been engaged in for many many years previously. 

VRS: Thank you so much for that explanation. Does the ruralism or the geography of the state of Iowa affect availability of the types of resources that I H. R. C. now provides? 

SZ: Definitely. We- we're the only organization in the state that provides the types of services that we do and we are very very very poorly funded, while we are well resourced in terms of the number of individuals and volunteers that we have collaborating with the work that we do. Iowa has not made it a priority to use any of the federal funds that they've received to address the opioid crisis to fund the types of initiatives that our organization works on and so because public health is funded primarily with public dollars be they state local or federal dollars, we're really at a disadvantage as being the only service provider of our kind in the state without very much support from traditional streams of public health funding. But we see all the time that we receive receive requests for support, request for services every day from people living all over the state so folks as far away as Fort Dodge and Sioux City and Mason city too and some of the closer rural counties in our state. We have an office in Cedar Rapids and we know that um- many individuals will drive over an hour to get to our office, and it's not just the services that we provide that people travel long distances to, but its treatment as well so when we meet with individuals who are interested in changing their drug use patterns and are looking for a treatment, people are typically needing to travel up to two hours one way just to get to a doctor's appointment because the number of individual doctors or advanced practitioners, PA's and MPs, who are providing substance use treatment services in the state are so low and the regulations, up until actually it's interesting, up until a couple weeks ago due to the coronavirus pandemic, there were a number of restrictions on treatments, especially for people of opiate use disorder, that required that you must visit a clinic every single day to receive dosing for medication and so for many people they’re driving an hour and a half in their car every day to a clinic just to get treatment for opiate use disorder and that’s, that's unusual and because Iowa’s population is spread out fairly sparsely and in not a lot of dense clusters in many parts of the state, it's just not feasible that we're ever going to have lots and lots of new addiction treatment centers pop up in small towns or in in places that are closer to where people live, so then it means we need to think of new ways to get services to meet people where they're at rather than requiring people to kind of come everyday for dosing for medication.  

VRS: That is a dire picture in many ways, it's so resource intensive to do that kind of daily commuting. Can you tell us a little bit about some of these new ways I H. R. C. is exploring to bring services and treatments to folks at a distance? 

SZ: Sure, so for our services, we use a very very old fashioned method called the US postal Service and we do a lot of service provision via the mail, and we use, as much as possible, we’ll provide training and services to people over the phone, via text message, or Facetime, or a basic phone call and then mail people what they need. Through some of the changes that have just taken place at the federal level that regulate access to treatment, while we're not a treatment provider ourselves, we operate a patient navigation program that helps connect people directly into treatment. And so with our patient navigation program, what we've seen happen in the last couple weeks is rules that have been in place since the 1970s have suddenly shifted at the federal level, making it so that people who are looking for treatment for substance use disorders, whereas once there is a ban on providing telehealth services for people who are seeking treatment especially for opiate use disorder, that ban has now been lifted and so now rather than play a game where we, in the past, have tried to fill in, sort of fill in the gaps and figure out how we can piece together a solution to get somebody to a treatment provider who lives two hours away by stringing together a series of cabs or ubers and meeting someone at a hospital to advocate for them, now it's suddenly very different. We're able to allow people access to meet with providers via telehealth for their first time to receive their treatment for addiction and that's a huge deal, it has made compliance with appointments, are people are following through on coming to their appointments, the rates have increased really dramatically but it’s also made it a lot easier for people to find providers that they will work well with. For example, many providers in the state of Iowa use a treatment model that's been pioneered by the Betty Ford Hazelden foundation in Minnesota which uses an abstinence based model of treating substance use disorders, but in Iowa there only a few providers who are willing to take a harm reduction philosophy and approach to treatment and working with people where they are and meet people with flexibility when it comes to thinking about what a person or a patient’s goals are and allowing that to dictate the course of treatment rather than requiring that the provider’s goals or a certain philosophical approach to treatment’s goals dictate how that person's process should go in treatment. So that has been really powerful in that it- these new telehealth regulations changes allow for people to start accessing treatment through a provider of their choosing not just the only provider please just with an eight two hour radius. It gives people a lot more flexibility and freedom in finding a provider that really is able to work with them on their individually unique goals.

VRS: That's incredible and really hopeful. Could you tell us a little bit more about, in your opinion, what the most vital service or treatment I H. R. C. offers is and you've already spoken to these changes in telehealth, but are there any other changes that have really shaped how IHRC functions recently? 

SZ: Sure. So one of our most important services that we provide is overdose prevention, and in our program we’ll at least apply people with this medication called naloxone also known as the brand name Narcan and the medication is one that reverses an opioid overdose so for people who are using drugs like heroin or prescription opioids, overdose can be something that happens fairly commonly and this medication works essentially to bring people back from the dead almost, it’s sort of a miracle drug in that it has no adverse side effects. It's not dangerous to administer someone who is not overdosing and in fact it's really not dangerous at all and there's no there's no upper limit of dosing so it's a really really safe medication. Many physicians will tell you that it's safer, many many times safer, than a number of the medications that are for sale in the aisles of the HyVee pharmacy like Tylenol or ibuprofen. So this medication is one that we distribute to people all over the state. We’ve distributed nearly forty thousand doses in the last two and half years and we've had a lot of success with distributing the medication because many people that we distributed it to come back to us looking for more medication and they tell us that they've used it so we know that at this point we’ve had around 2,600 individuals whose lives have been saved from the medication and having had an overdose reverse. There's really really good data about this medication that exists at the government level, I’m sorry at the national level, and so the federal government has put out a lot of guidelines on how to best uh, best target the distribution of this medication in the community and so there are many messages from people like the Surgeon General who say everybody should carry naloxone with them, everybody should obtain this medication carried it on them in case they observe an overdose. But really what we know is that people who are most likely to reverse an overdose and administer this medication are people who are actively using substances and then the close close family and friends of people who use drugs, so if you don't know someone in your life that you see on a regular basis in a place like Iowa where we don't have an intense activity of people living and working and being out on the street, there's not a lot of a lot of life that happens necessarily outside in Iowa other than people like going for a walk or a run it's certainly not like Philadelphia or New York you're not likely to witness an overdose in a public setting. But for people who have a sister or a boyfriend or someone really close to them that does use heroin or other opiates then carrying naloxone is often something that they're more likely to have a need for than somebody in the general public but even more so than law enforcement and other first responders, so people who use drugs reverse about eighty five percent of all overdoses that are reversed with naloxone whereas law enforcement and emergency medical responders reverse about five percent each respectively. So within the last few weeks one thing that we have all thought may happen but it had a hard time tracking is that there may be an increase in overdoses due to social distancing that leads to social isolation. So when people are isolated, that can be a time when their drug use increases because a lot of times opiate use in particular is a response to a painful stimulus or something that's uncomfortable and being alone is something that often times can be uncomfortable and leave people feeling vulnerable to pain of some kind and so many people around the country are anticipating that there will be a spike in overdose,s especially in fatal overdoses because when people are by themselves, especially people using drugs by themselves, there isn't, that means there's not somebody else there to administer this medication, Narcan, in the event of an overdose. So when people are overdosing, they’re unconscious, they’re not breathing, they can't administer it to themselves and there's not really, there's no predicting when somebody's going to overdose so you really need to have people watching out for each other, spending time around one another, physically checking up on one another in order to be able to make overdose prevention work and when we have uh, people are so isolated and distant from one another then it becomes trickier to make sure that people can do that, that act of looking out for and protecting one another. So while we don't know yet what the impacts will be or what the what the effect will be, many people do anticipate that the pandemic second area of effect will be to drive an increase in overdose deaths.

VRS: That is hard to hear and terrifying, I'm sure you and everyone that you work with and loved ones and people that you know that are vulnerable right now. So how are you responding at IHRC to the pandemic specifically? 

SZ: So we've kept our services open and we're continuing to function as sort of as usual but we're encouraging our clients and our participants to receive deliveries from us rather than coming into our office and into our drop-in center. We’re really promoting and encouraging that people stay home and let us come to them and deliver supplies. We’re taking many many precautions when we interact with people so making sure that we keep a distance between ourselves and others, playing appropriate personal protective equipment, and making sure to practice good hygiene practices, and making sure that we reduce the amount of contact between ourselves and our clients as much as possible. But one of the most important things that we've been doing is just working to educate the people that we serve about this pandemic because many don’t have very strong sources of information where they receive news about public health, this is something that's been very confusing and especially because many of the people that we serve are relatively low income and have a history of arrests and incarceration there's a general sense of mistrust of government. So people have not necessarily been heeding the warnings of government officials and not necessarily listening to the instructions and orders to practice social distancing but have had sort of a big gap in understanding about what is real and what is not real when it comes to the pandemic and its signs and symptoms and opportunities for prevention. So that's the most important role that we play at this time is getting out accurate information to a community that has been deemed by traditional public health services as too hard to reach or impossible to access.

VRS: That's incredible, important work. In non pandemic times, how does I H. R. C. advise folks who want to speak to the issues that you deal with every day about the language that should be used to address the stigma of addiction? What kind of language is best and how can we shift community thinking about these topics? 

SZ: Sure, so we often talk about using person centred in language and and so you'll notice that while we've been talking I haven't referred to anyone that we work with as an addict or as a more inflammatory term that people sometimes used to describe the community of people that experience uh- experience substance use disorders or just use drugs recreationally. Many people used drugs and do not have a substance use disorder, so we try to use language that is broad and encompasses many different types of behaviors and life experiences and that means leading with uh- leading with language where the word person or people comes first so then ensuring that people are not identified by their behaviors, but the people identified first as people and then as an action second. So people use drugs, rather than a drug user or a drug addict, and then removing some of those identified- those terms that reduce people to their behaviors like an addict from our lexicon. There are people who choose to self describe themselves in those ways and then that is never something that needs to be stopped or ashamed, you know we don't want people going around and saying oh you just get referred to yourself as an addict, don't you know that that’s stigmatizing. No, for many people, referring to themselves as as somebody who is an addict can be something that is seen as empowering and claiming a certain narrative or story or identity. But, for people in the broader community who want to dissolve stigma, adjusting our language can be a first step that people take. Probably the biggest and most important way to address stigma though in the community is a really dramatic step and it's a big one but it gets at the heart of the issue and that is that substance use is stigmatized because it's something that we believe to be criminal, and while many people know and will say things like ‘we really can't arrest ourselves our way out of the drug problem’, ‘arrest and incarceration is not the solution to a medical or public health problem’, until we can move past just giving lip service to those ideas and actively change the laws around sections used in order to make sure that people that use drugs are actively not criminalized then we don't have much hope for changing the way in which substance use and the people that use drugs are stigmatized. Decriminalizing substances, but most importantly decriminalizing the people who use them is the most important step to be taken in order to reduce stigma, because without having that criminal association it's hard to continue to stigmatize people.

VRS: Thank you, so we’ve talked a lot about the client facing services that IHRC offers but you bring up a lot of important intersections with policy at both the state and federal level, so how does IHRC affect policy or try to affect policy? 

SZ: So our policy program program works to address a number of legislative priorities and so we primarily work at the state level to change and shift policy, working on policies that affect infectious disease and overdose rates for people who use drugs. So as an organization we develop public policy working with our partners at the national level to develop policies that take into account the lessons learned from other states and best practices from other policy environments, and then bring those pieces of legislation to elected officials in our state house in Iowa and work with them to see those, those bills introduced and then moved through the state house. At the federal level we don't do nearly as much and so our focus is really at the state level but we work with our national partners to support campaigns that they lead at the federal level in order to make sure that our federal lawmakers know that their constituents in their districts are paying attention and do care about the issues that federal advocates are asking them to pay attention to.

VRS: Great. So you've talked about some good scenarios like decriminalizing drug use as an optimal outcome for the work that you do, could you describe for us the end of public health? What is the absolute worst case scenario in your opinion?

SZ: I think that the worst case scenario for the community of people that we work with in many ways we have been- we have been living in the worst case scenario for quite some time and living in a world in which things are actively getting worse for people who use drugs. I think if, if you could design a system in which you wanted people to continue to get sick and you wanted people to die from accidental poisoning, you would design a system that we live in now. Because over the last 150 years we've created a world in which people believe that people who are experiencing pain and who take very rational, very reasonable steps to minimize the discomfort or the pain they feel on a daily basis, be it physical pain, or psychological pain, or emotional or spiritual pain, when people work to address that pain, they’re viewed as deviant and criminal and so what we have essentially done is decided that other people's pain of certain kinds does not concern us and not only does it not concern us but it scares us and it frightens and upsets us and so we need to remove it from public eye and from our communities in general and so by putting people into prison and into jail for very long sentences for simply for the act of choosing to put a substance in their body that will alter their consciousness, that fundamental decision has really transformed the world that we live in for people who use drugs but it's also created a sort of a perfect storm in which we've built up so much momentum around this particular system, our prisons are so large and our criminal justice system employs so many people, that because of the economic system we rely on, there are very few incentives to do anything differently. And so, in fact, we are incentivized to continue moving forward with this idea that some people's pain is unfathomable and some people's pain is inappropriate or deviant and bad and therefore we must remove these people from our community and put them in a place that's out of sight and not only do we do that but we make a lot of people make a lot of money off of that very process and once individuals are released, there's really no hope for for repair, for healing, or forward movement, people are largely just caught up in the cycle of- and remain in the criminal justice system for most of their lifetime. So in a lot of ways you couldn't design a system that is more perfect when it comes to perpetuating underlying pain and suffering that people experience that can lead to substance use, especially in its more problematic forms. In many ways their examples in the world today there are much more dramatic and are supported by President Trump in other parts of the world, people who possess a small amount of substances can be, can, can be tried with the death penalty, but in in some in the Philippines, the president of the Philippines has called for vigilante justice against people who use small amounts of substances, so encouraging citizens of the Philippines go out in the streets and murder people who are suspected to be addicted to substances and so that is I think it really if, if that's not apocalyptic and I am not sure what would be the next worst stuff to happen in, in this this world for people who use drugs. So it's a bleak picture and fairly depressing but I think it offers on the other hand a lot of opportunities for help because in recognizing that things cannot really get much worse, there are many many many opportunities for things to get better. 

VRS: That leads into my next question of what gives you hope?

SZ: Yeah I-I think about this a lot because um, the work that we do can be very heavy and there is a lot of suffering and a lot of death that people are exposed to when they work in this field or not just when people work in this field but when people are surrounded every day by this as their personal world too and not just the professional world and so for- in the work that we do fundamental to our goals is the desire to work with people to create a feeling and sense of empowerment. So rather than just going out and deciding that we're going to deliver services to people, we're working to engage people in our process and working to bring people in to a community and to participate in something that's bigger than themselves, and offering people an opportunity to create meaning and connection is-is sometimes what people will identify as the heart of community organizing and community building and it's not traditionally seen as the fundamental heart of public health. But in the work that we do all of it is about building connection with people and then encouraging them to stay and then watching what happens from there is is the most helpful of all. And so there's so many people that have come into our program that arrived and said that I-I witnessed an overdose and I need more Narcan for the next time that happens and the first question I ask is how many people do you know that are like you how many people do now there are using heroin on a daily basis or people that are overdosing and we'll give people as as much naloxone as they want based on the number of people that are in their network. So some people will say okay I could use a hundred doses of naloxone, some people say I could use eight hundred doses, and we’ll say okay and so watching those individuals go out into the community and transform themselves from having an idea of themselves as someone who is worthless or powerless or worthy of being in prison and not worthy of having experiences and relationships in the world then offer them an opportunity for connection, watching people dissolve those ideas those falsehoods in their thinking. Then gain very real proof that they are valuable by distributing this medication and watching as other people use it to save someone's life, that leads to a really great sense of personal power, being instilled in people. And so even though at the start of the day we never set out to say we're going to stop people from using drugs in Iowa, oftentimes as a by product of the things that we do, like distribute naloxone, people will come back to us and say because you gave me this naloxone and because you taught me how to teach other people to use it, I felt a sense of value and myself and when I felt that way I wanted to become more accountable to the other people in my life who were telling me that my substance use was causing problems in our relationships, I wanted to modify the way that this drug shows up in my life so that I can give out more naloxone, this can become my career so that I can do this every day and save more people's lives. And so we see a lot of times we see people cease their drug use or dramatically dramatically reduce their drug use as a result of engagement in the types of programs that we provide. And so I think, just to answer your question, watching other human beings go through that evolution of recognizing their own value and power is beautiful and even though it's a very small thing that happens one person at a time, it's extremely helpful because it's such a profound change and it offers so much more opportunity for for other people too, beyond just ourselves but for all the people that exist around these other individuals as well. 

VRS: thank you that is really hopeful. Is there anything else I should have asked?

SZ: No I don't think so. I really appreciate you having me and for the thoughtful questions and the opportunity to discuss. 

VRS: Thank you so much Sarah, your work is so crucial and so needed and I really enjoyed our conversation.

VRS: This is the number at the end of the world with Vero Rose Smith. Tune in next week to learn about another way in the world might end. The music for this podcast was written, performed and produced by Gabi Vanek. You can hear more of her work at her soundcloud which is linked in the show notes. Thanks Gabbi, and thanks all of you for listening.

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