Season 1: Health Equity
Season 2: Nutrition
Season 3: Substance Use Disorders (SUDs)
In this episode of Buffalo HealthCast, we dive into the world of long COVID with two distinguished experts, Dr. Sanjay Sethi and Dr. Jennifer Abeles.
Join us as we discuss the challenges faced by patients and healthcare providers, and uncover the importance of research and studies being conducted at the University at Buffalo. Whether you're a healthcare professional, a patient, or simply interested in learning more about long COVID, this episode offers valuable insights and practical advice.
Tune in for an engaging and informative conversation that sheds light on the critical aspects of long COVID, and the efforts being made to advance our knowledge.
Nada Fox: 0:06
Welcome to the buffalo health cast the official podcast of the University of Buffalo School of Public Health and Health Professions. Today, we're exploring long COVID with two of the experts. Dr. Sanjay Sethi, Deputy Director of University at Buffalo's Clinical and Translational Science Institute and Dr. Jennifer Abeles co director for long COVID Recovery Center, internal and pediatric medicine at the University of Buffalo Jacobs School of Medicine and biomedical science, whether you're a healthcare professional, affected by long COVID, or just curious, this episode is full of valuable insights, sit back, relax and join us on this podcast. Let's get started. Thank you both so much for joining us today. Before we get into it, can we do an introduction into long COVID For those who are not real familiar, what exactly is long COVID.
Dr Jennifer Abeles: 1:01
So long COVID are symptoms that occur after having had COVID occur about three months after having the infection that can't be explained by any other underlying medical issues.
Dr Sanjay Sethi: 1:16
So essentially, most in most cases, you know, the symptoms will disappear. And some they persist, and some actually new symptoms appear. So it's, you know, it's not just that the COVID never recovers. I mean, that's a common scenario, but also sometimes it might get better, and then they start having new problems, which again, as revealed, as Dr Abeles said, it can't explain otherwise.
Nada Fox: 1:37
How common is long, long COVID among individuals who
Dr Jennifer Abeles: 1:37
Documentation right now is about 6% of people who have COVID will develop long COVID, that number has changed over time, it's been as high as I believe factor set the 11%. And I've seen as low as 3%. So it seems to be variable at times, but 6% is what I've seen published most recently, have had COVID 19.
Dr Sanjay Sethi: 1:45
Yeah. And just to add to that, you know, yeah, it is extremely variable and varied. I would add to it. We've all right. I guess it also, to some extent depends on when and how you look for it. So earlier, if you look at people at three to six months after they had the acute COVID, seen anxiety and depression. I mean, that could be because of you're going to have a larger proportion if you look at six months to a year out. So people do recover. And then you know, the numbers are, are less than so about 6%, I think is a really good estimate. Today. the COVID, long COVID Or could be a part of the long COVID. You
Nada Fox: 2:28
significant portion of the population. Wow. What are the most common symptoms associated with long COVID.
Dr Jennifer Abeles: 2:35
The most common ones we hear about are fatigue, fatigue, both at rest fatigue with exertion. Brain fog, is another one people talk about confusion, memory loss, see a fair amount of that. And what is interesting is that some shortness of breath, some pulmonary symptoms, cough, some sleep disturbance. We've seen other things, we've seen some cardiac issues, most commonly called pops where they have different studies done in different parts of the country, really high heart rates, and they feel like they're going to pass out or they actually do pass out some of the more common ones. But there are a lot of symptoms of long COVID that we get complaints about or people describe. including ours, they all kind of show the same pattern. So
Nada Fox: 3:14
How soon after the initial infection do symptoms of obviously it's you know, there's something consistent about the patterns of the disease. Of course, it's mainly a respiratory disease when it's acute. But long COVID long COVID typically appear like how do we start distinguishing initial COVID infection versus long COVID infection? Interestingly, is much more of what you would think is more of
Dr Jennifer Abeles: 4:12
I think as Dr. Sophy mentioned, some people will have COVID They'll get better from the infection and continue to have some symptoms. Some people recover completely from long from COVID and then develop new symptoms about three a neurological problem with the fatigue, the brain fog, you months after two to three months after having had COVID. They completely recover and then develop symptoms. So it's variable. When the symptoms start for each individual know, the difficulty concentrating, and also the patient and what it is some people will develop new symptoms like the brain fog, the fatigue, some people will get worsening of chronic medical issues they already had before having COVID autonomic dysfunction. So it's very individualized. You can't say all people with long COVID present this way.
Dr Sanjay Sethi: 4:57
You know, I think we have to be a problem, because the symptoms are kind of nonspecific. So, you know, fatigue is can happen because of other reasons, you can have difficulty concentrating because of other reasons. So we always have to make sure that not something else is not going on. So, you know, people shouldn't just assume I had COVID, and I'm having this problem, this is long COVID, we see that quite often. And then we try to dispel that notion because and also look for other reasons, because the last thing you want to do is miss something which is treatable and and related to their medical problems, or their medical problems, rather than the COVID. itself.
Nada Fox: 5:33
Are there any specific like criteria or tests that we use to diagnose long COVID?
Dr Jennifer Abeles: 5:39
we wish there were specific tests used to diagnose long COVID, a lot of the testing that's done, I mean, we see patients that have had a huge amount of testing, I think that's one of the biggest frustrations, they have all sorts of bloodwork, it doesn't really show very much. That's abnormal, they have all sorts of cardiac workups, that are relatively normal, they have all sorts of imaging and diagnostic testing, and it's normal. And I think that's one of the biggest frustrations is people have a lot of testing. And in the end, the testing looks normal, but they still have these very distinct symptoms that we attribute to long COVID.
Dr Sanjay Sethi: 6:18
So there's no specific diagnostic tests, most of these are what we call rollout, you're looking for other things. And in any other part of the reason we don't have a specific diagnostic test is because you don't understand it fully and you know, and maybe different ways by which people get along COVID. So I think that's definitely a challenge we have,
Nada Fox: 6:40
yeah, I saw on the UB long COVID site, there is a registered registry survey form that people can complete. Are you hoping that that'll kind of lead to more diagnostics, criteria for it,
Dr Jennifer Abeles: 7:00
we actually started our long COVID work. Through the survey, we wanted to evaluate the individuals of the Western New York area to see who was being affected by long COVID. So before we ever started the recovery center, that was a research project, we started, where people can go online and still are going online and filling out the survey and giving us information about themselves when they had COVID, how many times they've had COVID, how bad their COVID was, treatments, they've gotten, you know, their medical history, it's very, it's a very comprehensive survey. So they start that way. And then based on doing the survey, they can be evaluated at the recovery center if they choose to. That's where we provide the treatment component of the long COVID.
Dr Sanjay Sethi: 7:49
And you know, of course, we we would like to develop diagnostic tests. But right now it's more of understanding the spectrum and and then introducing these people into other research studies, which hopefully can help us define the disease better. This is becoming clear that the standard diagnostic testing is not going to give us a test that's going to work. So I think we will, as we understand it better. Hopefully, there are other tests that are
Nada Fox: 8:14
Are certain populations more at risk for developed, which are more specific, you know, and somehow can diagnose the problem better. developing long COVID.
Dr Jennifer Abeles: 8:26
We have not found that yet that there's a certain population, we do know that certain groups are more engaged in the long COVID survey and Recovery Center. And we're trying to actually enhance the availability and the knowledge to all community members of the Western New York area. So I have not seen that certain individuals groups are more likely to get long COVID Just more people are more likely to look for support and treatment for long COVID.
Dr Sanjay Sethi: 9:03
Right. I mean, there's a suggestion that the literature and women get it more frequently than men, there is that suggestion in the literature that's not like, you know, the, say the higher incidence and women by the looks of it. And, and the second thing or maybe that, and again, that's one of anecdotal observations that people will take preexisting, autoimmune kind of conditions, those people seem to be somewhat more predisposed to getting the symptoms worse or new develop new problems after after COVID. But that is somewhat anecdotal, and yet completely healthy people without any problems can also develop long COVID.
Nada Fox: 9:42
So we're still learning in real time about that
Dr Jennifer Abeles: 9:45
every day.
Dr Sanjay Sethi: 9:47
Absolutely. And I'm building the bridge as we walk on it, you know, trying to understand and manage it at the same time.
Nada Fox: 9:54
That sounds like a very simple task. What impact is long COVID have on the daily lives and functioning of those affected.
Dr Jennifer Abeles: 10:04
I mean, the effects for some individuals is profound, we have seen numerous people who are no longer able to do their jobs. I mean, that is not uncommon for people to need support, and to apply for disability to just be so overwhelmed by the symptoms, you know, when you can't do your activities of daily living without getting exhausting. So there's no way that you can perform your job the way you did before you have long COVID. Even people who don't have support from family, I mean, it's it's profound, how affected some people are their entire world turns upside down. And this is, I think one of the hardest things is you take people who were relatively healthy before having COVID. And you they go through the COVID infection, and they end up with long COVID. And they can't do anything the way they did it before. And I think that's one of the hardest realities, to work with them to kind of learn the new norm for them, and how they can live in that. And that's where a lot of the anxiety and depression comes from, because it's really relatively sudden.
Dr Sanjay Sethi: 11:15
Yeah, absolutely. I mean, again, there's a spectrum, like the spectrum of the disease is a spectrum of impact. And, as was mentioned, there are some severely impacted others, you know, unless impacted, but still, it's a problem. I mean, it could be something like, you know, that some people never recover their sense of smell and taste, which may not seem, which becomes a big deal if it's with you for a very long time. So things like those. And so, Spectrum exists, and, and, you know, we just have to be cognizant of that.
Nada Fox: 11:50
That sounds heartbreaking as somebody that loves food. And I consider myself a foodie, you know, the idea of not being able to smell or taste that would break my heart.
Dr Sanjay Sethi: 11:59
I know.
Nada Fox: 12:00
Oh, especially now that we got to James Beard nominated restaurants in Buffalo heartbreak. Alright. So what are some of the current theories about why long COVID occurs?
Dr Jennifer Abeles: 12:13
Oh, that's a loaded question. Yeah, let you take that one to start.
Dr Sanjay Sethi: 12:19
Yeah. So there are several theories. First of all, you know, after viral infections, other viral infections, people also use to develop these kind of problems, you know, a small proportion. So it's not, it's kind of known that this can happen after any kind of virus infection, but because we have so many people with COVID, and because the infection was so, so prevalent, and so, so much more impactful, we've seen you no longer with suddenly has become a big part of a conversation. So the thinking is a bit again, because you don't know it, there are several theories. And it could be that not necessarily one pathway is the one that's causing it. So it could be like, one of them is like, Is it some kind of an immune dysregulation, so your immunity gets out of whack because of the infection. And because of that, you know, it doesn't come back to where it's supposed to be and then starts impinging or attacking other organs of the body. So some some form of autoimmunity. That's one of the speculations or theories. The second is some people, you know, there's some evidence of persistent viral infection, that somehow the viral the virus persists in parts of the body and is driving the infection. So that's driving the symptoms. And that's been thought about things like changing the microbiome, you know, there is some nice data showing that changes in the gut microbiome could also be can be described in these people. And that could be also in some way implicated in the development of the problems. So I think it's going to be multifactorial. And there may be different mechanisms, and not necessarily just one, but those are some of the current theories. Jenny, you want to add to those? I'm trying to think there are others out there too.
Dr Jennifer Abeles: 14:04
That's more recently I've been reading about where there's a breakdown in blood brain barrier. So all right, usually, things in the blood cannot get into the brain, in human and what they're assessing that there is a breakdown, and so that they're getting into the brain matter, and that's affecting some of the neurologic, that we see. That's one of the newest ones I've just read about.
Dr Sanjay Sethi: 14:30
And I would add to it chronic inflammation in different parts of the body, though. It's interesting when we do the standard markers of inflammation there many of them like things like ESR and CRP, they're often not raised, but that doesn't mean that they there is not tissue inflammation that that is driving it. So that's another, you know, tied in with the immune function and dysfunction. That's another hypothesis behind what's driving long COVID
Nada Fox: 14:55
What treatment options are currently available for those suffering from long COVID Is there any treatment?
Dr Jennifer Abeles: 15:02
I mean, it's slowly coming out. Some of the things that we have seen, and we are starting to use here at the Recovery Center are related to like chronic fatigue syndrome, that treatment where you do physical therapy exercise, but in a very distinct method, where you're exercising in a very slow controlled manner to not overwhelm the individual, because too much exercise actually causes harm for some of these people. So you really have to be very careful in the type of physical therapy that you prescribe, providing the social support for these individuals. So they feel that they have that emotional and component, and then occupational therapy, or relaunching how they think about their daily life, things that they do that occupy their daily life, and changing their perception on how to engage in those things in a meaningful way, but in an adaptive way that they can handle those stresses, there's no particular medication that I'm aware of that's been recommended at this point.
Dr Sanjay Sethi: 16:08
So yeah, you know, several things have been tried. But they're all in kind of clinical trials stage, many time things are being repurposed, or people are trying, for example, giving the antivirals to see if that makes a difference. A study we may launch soon as giving IV immunoglobulin to modify the immune system. So then there are many other studies going on with with other kind of treatments that are used for not for specified for COVID. But were being used for other things. And now they're being tried over here. I think, at this point, if one is has the problem, and there are trials that are open and available, that's the best way to be, you know, get the opportunity to get treated, because unfortunately, as like everything else that was done a lot of you know, unproven treatments out there that people are offering without any evidence, which could even actually make things worse. So. So I think, given the fact that
Nada Fox: 18:01
Well, based on both of your experience with patients, there is no specific treatment, I think getting involved in what are some of the biggest challenges they have in managing their long COVID?
Dr Jennifer Abeles: 18:12
I think one of the biggest challenges for research studies where there are things being tried is the best the individual patient is really getting the providers that they see family members to understand that they have a true illness. I option. But that all the attention to it, I'm I think think that's a huge frustration when we get patients into the recovery center. It's one of the first times they hear, we hear we're pretty convinced that in the next, you know, me take two you, we know you're suffering, and the patient's frustration in saying I have told my primary I told my specialists, and they three years that we will at least develop treatments for just, you know, think it's made up, they don't think it's real, and that they don't patients don't feel supported by their some of them. And As Jenny mentioned, we're doing family. Because again, you can't say, oh, look, here, I've had a Rehabilitative Services, kind of, but in a very, in a very heart attack, I've had a stroke, the patient looks the same to them. And the patient doesn't feel heard, and they don't feel specific way. And very personalized way. I think that supported. And that's a huge frustration for someone who's really struggling with their health to not feel like other we know, at least, if done properly, will not do any harm. people are hearing them and supporting them in the method that they need.
Dr Sanjay Sethi: 19:08
And, you know, I'm totally agree but also for So I think that's what I would recommend for almost any the providers is difficult for people like us also, it's difficult not being able to have the lack of having a specific, a individual today without reservation, with the caveat diagnostic test and be specific treatment is a challenge. So, that it has to be personalized and and managed by somebody who you know, so that that becomes a challenge in the provider aspect of you. But yeah, patients, you know, I agree, clearly being knows what they're doing. But beyond that, in terms of heard being supported, is important. And I think that would be a good place to start. And also having maintaining hope medications, nothing specific at this point. because a people do improve with time. And be as I said, there is so much going on that it's just a matter of time before we find something that's going to work from it not maybe not all but a good number of people.
Nada Fox: 19:54
So what do you think is crucial for people to understand about long COVID
Dr Jennifer Abeles: 19:58
I think people need to understand that long COVID has affected a lot of people in our community. It's something that we, as medical professionals are actively trying to better understand. So that we can discover proper treatments that will help everybody and support people as we go through these research trials and clinical trials to help people and that people need to know that there is hope that they will get better, we will figure out more with time, we figured out a huge amount of information already just dealing with COVID, and then well on COVID. But we just need more time to work with individuals and as a community of researchers and medical professionals to come together to find the solutions for everybody.
Dr Sanjay Sethi: 20:51
Yeah, very well said. And I would just add, I mean, I always say look at, for example, the HIV epidemic when it came on, we had no hope No, no, no good treatments, didn't really fully understand it, and see where we are today where it's become a chronic, manageable, you know, disease. So I'm hoping that that's what will transpire here. Again, I don't want to people to think that long cord and HIV are similar. They're not. But you know, the concept of when enough attention is paid by physicians and researchers on a certain disease. I think, you know, things happen. And so I really do anticipate that's going to be the case over here. So I think the whole part of it, we definitely want people to maintain that.
Nada Fox: 21:39
All right, well, here at UB, we have the long COVID Recovery Center, which you both are a part of. And you mentioned your multidisciplinary team, I heard you mention physical therapists, occupational therapists, are there any other disciplines that y'all bring in when working there,
Dr Jennifer Abeles: 22:01
we have a social worker here as well, that is working with our individuals who need mental health support, as well as figuring out disability and things of that nature that may be very new to individuals, trying to provide that social support with social worker to help them we do bring in, or we do send our patients to specialists, as indicated by each person's unique physical needs and complaints so that we make sure we're seeing the whole patient,
Nada Fox: 22:33
how does the community access, get access to the long COVID Recovery Center,
Dr Jennifer Abeles: 22:41
the best place is to go online and do the long COVID survey. That is the best entry point you do that. And then Sarah actually looks at all of those results. And then we'll reach out to patients and ask if they want to be at the Recovery Center, and help to facilitate getting them an appointment. And at that point,
Dr Sanjay Sethi: 22:59
right. I mean, that actually is the best way because the survey not only just, you know, provides us a good mix, mix mix helps us to make sure that they meet the, you know, the definition of long COVID but also gives us like a baseline of where they are. And then we in the survey, we actually are now going back to people six months out and 12 months out and every kind of every six months to see where they are going next. So I think really, that to us is the best way to to get involved in the Recovery Center. We're also doing several outreach, you know, outreach activities, especially in the underrepresented communities and in the in the inner city communities to you know, to get them involved because sometimes they don't really have access to all this information as readily as, as others do. So the between the outreach and the survey, those are ways to really get involved.
Nada Fox: 23:59
How can family members and friends and loved ones best support someone who is dealing with long COVID
Dr Jennifer Abeles: 24:05
is like any other medical issue, I think just accepting the patient or the in that family member as they are and just accepting them at their word that I'm sick and being supportive and saying what can I do to help you just like you would do with anybody else who perhaps you can actually see the illness? Just say, Okay, you have long COVID What do you need from me? What can I do to help you? Can I take you to appointments? Can I help you with making meals, things of that? I think that would go a long way to support a person who's suffering in their own way. And the acknowledgement of saying, Okay, I'm here to help you.
Nada Fox: 24:47
Are there any steps that we can take to potentially reduce our risk of developing long COVID
Dr Jennifer Abeles: 24:55
We know that research shows that getting your COVID vaccine It is an important step in preventing individuals from getting a sick with COVID. And it also does prevent people from getting long COVID. So vaccination, continuing with that mindfulness of getting your vaccines as updates come out to protect yourself, especially our older individuals over 65, making sure they're getting their vaccines, if people are sick, being good about being sick and staying away from others, and, you know, protecting our friends and our loved ones by staying home, and we know we should stay home.
Nada Fox: 25:36
Right. And now, again, that is long COVID Recovery Center here at UVI. As a sounds like a valuable, invaluable resource for our community to you know, you have just a small task of you know, the diagnosis and the treatment, the support all of those things. Is there anything that you would recommend for the individuals struggling with lONG COVID? Like, how, besides reaching out over the survey and anything? Is there any way? How do we get the people suffering with long COVID? The family members that are trying to support these individuals dealing? And how and winking them with you? Is there any other way besides the online survey? Can they send an email? Can they call? Is there anything like that, that they can do,
Dr Jennifer Abeles: 26:24
they can send an email, we do have an email, we use calling again, can be done. But it's I think, very cumbersome, because then it requires a call back and then asking the questions and asking them to do the survey. So they could email but again, doing the survey and at least getting started on that would be the easiest one because again, Sara will reach out to somebody who hasn't finished it, perhaps they got too tired to do that. And they can she can support them and helping them to finish it as well. We have had some individuals who had to be called, and they did the survey online. And Sarah helped arrange that, as well.
Dr Sanjay Sethi: 27:07
And you know, also, I think, people, I mean, if they are having these unexplained symptoms, having the conversation with the primary care physician is important, you know, not to just ignore them, but have a conversation with them. Many times the primary care physicians can at least do a lot of the baseline testing to see make sure that that is not something else, you know, that that has been missed. And, and then and then you know, then going ahead and getting involved with the Recovery Center is the way to go today. And, you know, we're hoping to, you know, actually putting in for a large grant from the quarry to see if we can, we can package this whole rehabilitative approach, tested, and also make it available more widely across Western New York. So the funding proposal is still working on it. So we'll come to know later in the year, whether we did get the support, and that'll actually enable us to do more outreach and treat a larger number of people. So we're hopeful for that. But I think in any case, you know, the there will still be opportunities within the recovery and center. And, and the other thing is to look for research studies, you know, the recent study is going on. And then if you think you meet the criteria get involved. So anyway, we're gonna move this field forward.
Dr Jennifer Abeles: 28:25
And that's one of the nice things if you do the survey, we actually provide a monthly newsletter that goes out to all the individuals who've done the survey, just with up to date information, newest research studies, he was findings, really trying to have that back and forth, and provide individuals with continued to support what's the newest research. And if there's a new research study that's available locally, and they meet the criteria, they will receive an email indicating the information and giving them the choice to participate if they want. So again, the survey does more than just provide us with information. It's a two way street providing information on a monthly basis back to the individuals who've completed the survey as well as the ability to get involved in different research studies that are available locally, that they might choose to be involved with, if they find that that would benefit them.
Nada Fox: 29:19
Going forward would would you like primary care to kind of start referring any suspected like long patients long COVID patients like do you think that would be like a good
Dr Jennifer Abeles: 29:29
I'm like that per se that I do primary avenue. care physicians can do a lot of the beginning workup outside of the long COVID Recovery Center, you know, the basic labs that we run, if there's cardiac symptoms, evaluating that are respiratory symptoms, because again, we don't want to repeat things that have already been done. If an individual comes to us and says I've already been my primary care doctor and they've sent me these other specialists. We will get that information and look at it. We don't want our Uh, you know, recreate the wheel take people's time to do all these things. Again, we're looking to have a collaborative response with the patient and the doctors that they've already seen.
Dr Sanjay Sethi: 30:11
And, you know, finally, I mean, there's no way we can just have the one Recovery Center to take care of all of these individuals. So, so I think, yeah, the plan would be to develop, you know, as as knowledge becomes better as our treatments become better and a diagnosis, you know, we would be, we hope to be in the center of trying to disseminate this information out to the primary care providers, so that they actually get empowered to deal with, you know, a good number of these individuals.
Nada Fox: 30:37
Well, thank you so much for your time today. Is there anything else you'd like to share with our listeners about long COVID that we haven't covered?
Dr Sanjay Sethi: 30:47
I would just say stay tuned as it lots to come.
Dr. Sanjay Sethi, MD
Professor and Chief, Pulmonary, Critical Care and Sleep Medicine; Assistant Vice President for Health Sciences, Department of Medicine, Jacobs School of Medicine & Biomedical Sciences
Dr. Jennifer S. Abeles, DO
Clinical Assistant Professor, Department of Medicine, Jacobs School of Medicine & Biomedical Sciences
Elizabeth Bowen, PhD
Associate Professor | School of Social Work
Join us for an enlightening conversation with Elizabeth Bowen, PhD, an expert in addiction recovery and recovery capital. Listen as we discuss the invisible population of persons experiencing homelessness and the unique issues this community faces, trauma informed care, and the need for supportive housing.
Nada Fox 00:00
Greetings, public health enthusiast, and welcome to another episode of the Buffalo HealthCast podcast. My name is Nada Fox, and I'm going to be your host. And I'm beyond thrilled today to have a distinguished guest with us someone whose experience and expertise spans the vast landscape of Social Work and Health Research. Dr. Elizabeth Bowen, thank you for taking the time to speak with us today.
Dr Elizabeth Bowen 00:23
Thanks so much. I'm excited to do this.
Nada Fox 00:26
Can you tell our listeners a little bit about your background and your experience,
Dr Elizabeth Bowen 00:31
Of course, this is a big part of why I do the research that I do. But so my name is Elizabeth Bowen. I'm currently an associate professor in the School of Social Work here at UB. But my background, before I went the research route, my background was in social work practice. So after I got my master's degree, I was working as a social worker in Chicago, and happened to find a job working in supportive housing programs. So these were programs that helped people experiencing homelessness get into stable, affordable housing with supportive services. And a lot of the clients that I worked with had a history of addiction and substance use problems along with other kinds of physical health problems, sometimes mental health issues, lots of trauma, so a lot of co-occurring issues. But in any case, in this work, what I saw was that, it seemed like my clients were getting this message that if they were unable to manage their substance use problems. And if they were not succeeding in recovery, it was kind of their fault. So they had often been in and out of various treatment systems. And they had gotten this message that, you know, if they were motivated, it would work. So if they were struggling in recovery, it was because they didn't want it bad enough, or they weren't motivated. And so people, I heard that from my clients in many different ways over time. And often people internalize this message. And it caused a lot of shame, it caused people to feel bad about themselves when they struggled with recovery. But from my perspective, coming into this, I didn't see it that way. It felt to me like it wasn't that they weren't motivated. It was more that they lacked stable housing, they lacked basic resources, it was just nothing in their life was really set up to be conducive to recovery. And so that felt really unfair to me that they're getting this message that it was their problem that they weren't motivated, rather than looking at the environment and looking at how things could be better set up to support them for recovery, including that really vital thing of having stable housing. So I know that's a long answer. But that's the clinical practice experience that always stuck with me. So then years later, when I decided I was interested in doing research, this was one of the things that remained interesting to me and kind of stuck out in my head was that disconnect between the messages that people get about recovery, and just the realities of the kinds of challenges that people struggle with. And then I came across this idea, this theory of recovery capital. So it's not my theory, it was developed by two other researchers, William Cloud and Robert Grandfield. But once I started reading about recovery capital, it really clicked with me because I thought this is exactly what I was observing as a practitioner. So from the get go, I was interested in doing some research related to recovery capital. And that kind of brings me I guess, to where we are today that I've had the chance to dive into that topic further and continue to do research on it. And ultimately, I'm really interested in using recovery capital to shift the lens that we use to look at addiction, especially for people that are homeless people that don't have a lot of income, people that are marginalized or otherwise lacking in resources.
Nada Fox 03:49
Thank you so much. So you've highlighted the intersection of homelessness, homelessness, excuse me, and health issues such as addiction recovery, could you delve into how stable housing plays a role in supporting individuals with substance use disorders on their path to recovery?
Dr Elizabeth Bowen 04:08
Absolutely. So I think there's first of all, I think sometimes there's a stereotype that if people are homeless and struggling with an addiction issue, that that addiction is the cause of their homelessness. And while it could be a contributing factor for some people, that's not always the case. And fundamentally, homelessness is really about a lack of affordable housing in this country. And being homeless is very traumatic for a lot of people. So often substance use is a way to cope with that for a lot of people with the trauma that comes with losing one's home and everything that goes along with that. So that's just to point out that it's often not as simple as somebody having an addiction issue and that leading to them becoming homeless. So that said, there is a lot of co-occurring between these problems between Homelessness and substance use problems with regard to all kinds of different substances. But to me, the kind of key takeaway here is just that it's so difficult to address a substance use problem without addressing the housing piece. And historically, that's kind of what we asked people to do. So housing, services and services for people experiencing homelessness, traditionally, were set up that people really had to kind of prove themselves to get into housing. So people had to first go into a shelter system, then establish sobriety worked towards various goals and kind of prove they were, quote, unquote, ready for housing. And then finally, they could be rewarded with getting access to some kind of affordable housing program. So that's like the, the history here of a lot of homeless services. And some programs still do operate that way. But there has been a paradigm shift in the past couple of decades in the United States and in other places toward this idea of housing first, and that was the kind of program that I worked for, in my social work practice experience. So Housing First is exactly what the name sounds like, it flips that idea of having to prove that you're ready for housing, and tries to get people into housing as soon as possible with the idea that once somebody has housing, then they have that foundation of stability from which you can work on other things. And often these issues are all tied up together. So it's not just addressing somebody's substance use problem, but it's also addressing other kinds of health issues that might also being doing treatment for mental health issues for underlying trauma, linking people to employment resources, or education, all these things affect one another. But it's hard to work on any of them without stable housing. So that's what the housing first model does is get people into housing more quickly, so that you can connect people with resources and start to work on their goals with regard to recovery, or however they define addiction recovery, as well as any other goals that they might have.
Nada Fox 07:04
I think it's very interesting, because it's kind of dealing with the issue in a Maslow's sort of way like we have to deal with well, you know, the very first bottom of the pyramid, their physical safety those needs stable shelter and housing in order to even think about the next steps.
Dr Elizabeth Bowen 07:19
Yeah, exactly.
Nada Fox 07:20
It's interesting that you bring up that that wasn't always the case, because we kind of put the burden on the individual for a long time then, and expected them to be able to solve all of these problems prior to addressing that most basic, basic right. So thank you so much for putting that into perspective for us. Now, you talked about housing first and working in those types of groups. And you've collaborated a lot with local service providers, like the homeless alliance of Western New York, and it's just a practical application of your research. So how do these partnerships contribute to addressing addiction and substance use disorders within this community?
Dr Elizabeth Bowen 08:02
Yeah, there's a lot of I think, really great services in Western New York, and a lot of excellent providers that are trying to do exactly that. But the whole idea with Housing First is that it's really individualized, depending on the individual persons goals. And so there's not you know, one way that programs, address addiction and help to facilitate recovery, it really depends on you know, the individual client and what they want to work toward. And that was the same way with the program that I used to work in, in my social work practice experience. So housing first programs tend to take I'm sure there's some variations, but most take a harm reduction perspective, meaning that people don't necessarily have to define their recovery as being abstinent from whatever substance they were using. When you take a harm reduction perspective, you can work with people on whatever goals they have. So sometimes that is abstinence. It certainly doesn't preclude that. But sometimes their goal might be, you know, to switch from using one substance that's particularly risky, in various ways to a substance that might be safer and might have to do with using or drinking less it might have to do with the situations in which a person uses a substance that might have to do with the effects on their health or on their life, and how can they, you know, reduce those negative effects but not necessarily commit abstinence, if that's not where they're at or what they're ready for. So that's my I think biggest thing that I've observed about various programs here, as well as just with housing first, in general, is I think, programs often do a really good job of trying to honor that and work with people to meet them where they're at and to let people define the recovery way that they wanted to find it and then connect people with resources based on their specific goals.
Nada Fox 09:59
Thank you so much. I think it's so interesting that you've kind of defined like a harm reduction approach to it, and how recovering might not necessarily be a linear thing. It ebbs and flows, and people are trying, and we're all people. And sometimes we trip and make mistakes. But that doesn't mean. So I know you're you lead this big NIH study, and you came up with the multi dimensional inventory of recovery capital. Can you tell our audience a little bit about what this is? And how does this measure specifically address the needs of diverse populations?
Dr Elizabeth Bowen 10:09
Absolutely. Yes. I would love to. So I will back up a little bit and talk about what recovery capital is first, and then tell you about this measure. So as I said earlier, when I moved from practice into becoming a researcher, I happen to come across this great article on this theory of recovery capital, and I hadn't heard of it before. But when I read it, it really resonated with me right away. So developed by a William cloud, and Robert Greenfield. And Robert Greenfield is here at UB, by the way. So that was kind of a happy accident for me, when I started at UB was that I realized, Oh, I'll get to, you know, work with the developer of recovery capital. So in any case, they had done this study, looking at people who recovered from substance use problems without formal treatment. And so that's often called natural recovery or unassisted recovery. So meaning people that don't go to inpatient or outpatient treatment, often don't even go to AAA or NA or other 12 step meetings, just people that on their own, recognize they have a substance use problem, and are able to address it and recover. And this is actually a lot more common. I don't know the specific statistics off the top of my head, but it's more common than a lot of people think so not everybody that recovers necessarily goes through formal treatment, or through 12 steps. Um, so in any case, cloud and Greenfield, recognize that and we're interested in looking at, okay, so if people are able to recover without treatment, how do they do it? Like, what are their strategies? So they did a really nice qualitative research study where they interviewed various people, I think this was in Colorado, where they both were working at the time. And so they found people that had recovered in this way, and interviewed them about like, how did you do it? What strategies to use. And then based on that, analyzing those interviews, what they found was that people talked a lot about things like their social networks. So needing to change if they hung out with a lot of friends that were drinking or using, they had to change their social network, they talked about tapping into other kinds of social support. So maybe they weren't in treatment, but they just had a good friend or family members, who understood them and supported their goals and doing that. People talked about kind of their own knowledge, learning about addiction, being able to understand it better themselves, we use that they develop their own coping strategies, people talked about hobbies and other things that they were able to tap into in their lives instead of the substance use problem. And so through analyzing all of that thought, and Grandfield, came up with this idea of recovery capital. And so what that means is, it's just a term for the different resources that people have that can support their recovery from addiction. And there's four major categories to ID. So it's social capital. So that's the social connection, social support, your social network, a human capital, those are the characteristics of a person. So like your knowledge, your education, spirituality, just things about you personal characteristics that can help in recovery, physical capital, that refers to things like housing, like we were talking about earlier. So like those tangible resources, housing, employment, transportation, income, health insurance, just those basic resources that are really critical for Foundation for Recovery. And then the last one is cultural capital. And so this has to do with feeling like you can connect to a culture that support your recovery. And sometimes that might be something like a 12 step group, or some other kind of sober recreation group, or it might also just be connecting to however you define your own culture, and finding elements within that culture that support or affirm your recovery. So that's cultural capital. So those are the four categories. So again, I just read about that as a theory and thought, that's really cool. I'd like to do some research on this. And then I kind of dove into it deeper over the years. And one thing I got interested in was, how do you measure this? So this idea of recovery capital, I think is pretty popular at this point. In a lot of people research it, it's pretty popular in practice settings to like people are, are interested in this idea. And there are different ways to measure it. So other people have already made surveys to measure recovery capital, but I took a really close look at some of them, and found there often were some issues with them. So one problem was they sometimes deviate from this theory of recovery capital. So for example, recovery, capital doesn't say anything about abstinence, you can define recovery, however you want, and still talk about recovery capital. But then when I looked closely at some of these measures, and you look at the actual items they have on them, some of them would have items that would ask that would say things about, you know, abstaining, or not using, and I thought that doesn't exactly, you know, fit with the theory. So that was one thing. And then I also looked at a diverse population. So as a social worker, and given my practice background, I know that, you know, sometimes there's a tendency to assume that something that's tested mainly with white people, mainly with middle class people, sometimes mainly with men, so lack of gender diversity, there can be this assumption to assume that like, it's going to work for everybody, when we know, that's not often the case. And so I was interested in how were these measures developed, were they tested with diverse audiences, and I found that often they weren't, often they were usually a some gender diversity, but it was often mostly white people, mostly middle class people. So I thought, we don't even know if these are really, you know, reliable and valid for more diverse audiences or populations. So that's what ultimately led me to propose this grant and was fortunate to get funding to make a new Ultra Measure recovery capital. And I think the part I got most excited about is that we really got to do it from the bottom up. So that was another thing that often researchers just come up with the items that go on these tools, and then they test it out. But it's often the researchers coming up with it. And I wanted to really involve people with lived experience. So people who are in recovery themselves or people working in the recovery field, to get their perspective on what should we actually ask on this? And how should we phrase the questions because it gets, I know, that seems like a small thing. But that becomes really important, because we know words are important. And the way that you say something, can sometimes you know, just one or can make a difference with how people interpret it. So me and my team put a lot of thought into, we did come up with some initial like starting points of like, Should we ask about this. But then we did a lot of focus groups and interviews with people in recovery, mainly people in recovery, some people working in the service system, as well. And of course, there's sometimes some overlap between those two groups. So we got really great feedback from people about what we should ask what we shouldn't ask how to ask it. And then based on that, we were able to make a draft version of this measure called the multi dimensional inventory of recovery capital, I call it the Merck or mIRC, for short. And we did other testing, so then we gave it to a much larger group of people, but still with a lot of attention to diversity. So when we did test it, we were able to do it with an audience that was economically diverse, racially diverse, gender diverse. And it's not perfect, I think no research is but we were able to get a pretty broad group of people to fill this out. I should also say diverse with regard to recovery experience. So we had people that had been through treatment. And then we also have folks that would be in that natural recovery category who had not been through treatment. So we were able to get those perspectives represented as well. So after lots of work to test this, and then make some changes and refine it, we were able to finalize the measure last spring it and make it publicly available. So it is out there now for anybody who would like to use it. It's on we have a website through the UB school social work. So if you Google UB school, social work, recovery capital or Merck mIRC, it should come up and there's a little bit background on it. And then you can download the tool there. So it's out there. And my hope is that people, both researchers, and people in practice or somebody in recovery, that might be interested in using this tool for themselves. My hope is that people will use it and find it informative.
Nada Fox 19:19
Well, it's definitely informative. I went through and kind of did it on my own, just kind of do a self assessment, you know, which I think is kind of interesting and gives you a different perspective, and, and just yourself and what you're doing now. So as an educator, you teach courses on substance use and addiction. How do you approach these subjects in your teaching? And what insights do you aim to impart on future social workers in the field of addiction?
Dr Elizabeth Bowen 19:50
Yeah, thanks for asking about that. I think the way that I teach about addiction is very much in line with the way that we've been talking about it here. So I've tried to just emphasize this, there's not one definition of recovery that people can define that in a lot of different ways I do teach about recovery capital. So I do think that it's important for social workers and other people working in the recovery field, to know about that, and to have the sense that it's not just about what's internal to someone, not just about their motivation, but really about the resources. And that's a very social work view. We talk a lot in social work about people within their environments, and I tried to really drive that home, specifically in addiction practice and with recover. So we talked about the need for housing, we talked about how would you look at other forms of recovery capital that a person either has, so we can emphasize those strengths, as well as looking at where they might be struggling a bit, and how we can address those issues. And I talk a lot about equity issues as well when I teach about addiction. So, you know, I think you can't really talk about these issues without talking about drug policy, without talking about how that has been implemented in really racist and classist ways in the United States and looking at those, addressing those core systemic issues. Because ultimately, it's, it's not enough to just treat, I think the people in front of us that clinical practice is important. But I also want any students that I interact with to come across with that systemic lens, so that we're also looking at not just helping individual people, but thinking about changing the whole system. So that's at least what I shoot for. And then I also tried to go in with an open mind myself and to learn from my students, because that is something I found that I really do. Learn from people every time I teach, even when I teach the same class over multiple years, because the students are always different. And they bring different perspectives, different lenses, I often have some students in recovery in my classes, and who sometimes aren't open, you know, don't want to be that public about it. But then sometimes I have students that are very comfortable sharing about their own recovery backgrounds. So I always learn from that. And I always try to go in with that mindset, to hear from different people and to have my own perspectives challenged and expanded by what I learned.
Nada Fox 22:18
It's interesting because you talk about overviewing it from a systemic point, kind of looking at the big picture. And this is kind of the synergy between public health and social work, right? Like we're all trying to look at things from the big picture addressing the inequities talking about it. What do we need to do? How do we change this? How do we make this more equitable? Right?
Dr Elizabeth Bowen 22:40
I think there is a lot of overlap. A lot of synergy. Yeah. With Social Work and public health, for sure. Absolutely.
Nada Fox 22:45
And I think what people that like are kind of unfamiliar with public health, like it's always easier to explain it like it's very broad, big picture, I feel. Yeah. We're not treating an individual. But these anecdotal things lead to, you know, the evidence for what's going on in our in our communities in our state or however macro we want to get. So earlier today, you talked about your, you know, trauma informed care, and that sort of stuff. And you highlighted the how you use this in your framework. So I was hoping that you could answer this question, how does your policy analysis framework is based on trauma informed care? How does this approach contribute to addressing substance use disorders within the homeless population? And what policy changes do you believe could make a significant impact going forward?
Dr Elizabeth Bowen 23:47
Yeah, that's a great question. I love thinking about policy and talking about that. Um, so to just explain about this framework. So several years ago, a colleague, Shanta Murshid, and I developed this framework for trauma informed policy analysis that was then published in the American Journal of Public Health. And what we were trying to do with that was take this idea of trauma informed care, which is something we talk about a lot in social work. And that's basically the idea that for any kind of services, so mental health treatment, addiction, treatment, housing, whatever it may be, that it's important to think about delivering those services in a way that's trauma informed meaning that recognizes a lot of people that seek services have been through different kinds of trauma, like I talked about with populations experiencing homelessness, and sometimes people can be re traumatized in the process of seeking services. So how can we try to help people feel safe and recognize what they've been through, recognize how that might be affecting whatever problems or issues they present with. And then also try to prevent retraumatization from happening while people are getting services. So that's the whole idea of trauma. informed care. And the UB School of Social Work has been a big leader in that we have some great resources on that, and on how to do that. But my colleague Shunta Murshid, and I had gotten to talking about kind of taking the next step of taking it to that more macro level. So we just had started talking about what if we weren't, you know, just trauma informed in our services, but we tried to have policy that was more trauma informed I, with the aim of really trying to prevent trauma from occurring in the first place. Because if you think about traumas that happen in so many communities, they are systemic, and get they are potentially preventable. So that's how we got to talking about how you would implement principles like safety, and choice and empowerment, those are core principles of trauma informed care. So this paper that we wrote was about what those policies are, what those principles would look like in policy. So in laws and other kinds of high level policies. And so to answer your question about what that look like for people experiencing homelessness and addiction issues, to meet the most fundamental policy change, there would be expanding access to affordable housing. And I mean, the type of housing programs I was talking about, so Housing First, specifically, but also just affordable housing in general, because while a lot of people do need, those kinds of services that come along with Housing First there are, there are many people that experience homelessness, really, just as an economic issue, they might be in some kind of short term financial crisis or something like that. And some kind of just financial assistance, rental assistance, not even necessarily a huge amount of money, but at the right time, and being able to access that in a timely way that could prevent homelessness entirely for a segment of the population. So we really need more affordable housing across the board. And one thing I always try to communicate to people is that, you know, in the United States, we've never made housing and entitlement benefit. So meaning certain programs like Medicaid, or SNAP, which is what people sometimes called food stamps, those are entitlements, meaning if people are eligible for them, and they apply, they're entitled to get it. So the government can't say, like, oh, we ran out of money for that this year, you're eligible, but we're not going to give it to you. So we don't do that for certain programs. But that's not what we've done with housing. So housing has always worked the opposite way where people can be eligible and apply. And they have to wait years, sometimes, you hear about weightless for supportive housing, or for other affordable housing, that are years long, and of course, expecting people to wait years for something as basic as housing. What are people supposed to do in the meantime, it doesn't make sense. So that, to me, would be the most, the biggest trauma informed change we can make would simply be expanding access to housing, and that would take a big investment in various kinds of affordable housing. But it is something I think that's doable. And it's a policy choice that so far in this country, we've chosen not to do it. So that is the biggest change that I can think of.
Nada Fox 28:19
Thank you so much. We'll just continue along that and I think this kind of you might have already answered this. But what changes do you hope to see in public health and the social work landscape in the future? And it seems like a housing first policy, and affordable housing, is there anything else that you would like to you would hope to see in the landscape of public health and social work in the future?
Dr Elizabeth Bowen 28:43
Yeah, good question. So in addition to expanding access to housing through an increase in funding for affordable housing, I'm over a lot I would like and help to see just programs to move toward greater accessibility. And so I just think about specifically with addiction recovery services. Currently, I think there are some barriers that don't necessarily need to be there. And that do prevent people from getting help. And by that, I mean both financial barriers, so if people want various kinds of treatment, but can't afford them, but then also things like I have a colleague that does some research on methadone maintenance treatment, and how, you know, because of current policies that people have to go to a clinic generally to get methadone if they're getting that for their recovery from an opioid problem. And it's hard to get take home doses. And then obviously, it's hugely inconvenient to people to have to go somewhere every day, or almost every day to pick up this dose of medication and take it on site. A lot of people find those processes to be dehumanizing as well. So I look at things like that. And I think about how could we be trauma informed and how could we just increase recovery capital by make Seeing all kinds of various treatments more accessible to people. And so I think of my colleague who, you know, kind of put that issue on my radar. But I think about things like that. So if methadone and other kinds of medications for addiction treatment, for example, were more accessible to people so easier to get, if you could get it, you know, in your home, I think that would increase choice that for a lot of people would increase dignity and privacy as well as just making it more accessible in a practical manner. So that's one example. But in general, that's something I think about with policy change the intersects across social work and public health. Just how can we make treatment and recovery services more accessible to more people, as well as more trauma informed?
Nada Fox 30:49
People experiencing homelessness isn't an a population that's kind of popular or the most sought after in these sorts of discussions. And it's important that we highlight this community and they're not so hidden. And yes, they're at the forefront.
Dr Elizabeth Bowen 31:06
Well, right. And I saw the you know, with your theme being about addiction, exactly. People, when people are talking about addiction and recovery issues, they're not always thinking necessarily of a really marginalized population like that, like people that don't have stable housing. So I'm happy that I can kind of bring that perspective into the conversation. Yeah.
Nada Fox 31:25
And it's, and it's nice, because I think, not on purpose, but people tend to do this. It's their fault, sort of lens on this community. And that's, that's not fair to this community. It's, you know, it's not so thank you so much for, you know, giving the audience that sort of perspective. Last question for you. It's not too horrible. What is what if you could have one thing for our listeners to walk away with from this discussion today? What would that be?
Dr Elizabeth Bowen 32:01
Good question. If I had to say one thing for listeners to walk away with from today, I guess it would be just to think about recovery holistically. And to think about both addiction and homelessness as societal problems more than personal problems. So to look at how all of the different policy choices that we make, as a society, contribute to these issues, or access to treatment and recovery resources, and I just think it's so critical to shift the thinking from looking at these problems as individual failings, to looking at them more as a byproduct of policy failures and of choices that we've made as a society. So to bring that lens and specifically to be a lot more holistic in the way that we think about addiction recovery and have conversations about it. And recovery capital has been a big part of how I think about that. And I hope that that can be a useful tool that other people will think about and learn more about too.
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