Vibrant Episode 4 - HIV Longterm Survivors Day with Jim Clay
On episode 4 of Vibrant, we are honoring HIV Long Term Survivors Day. As we reflect back on the past 4 decades of the HIV epidemic, we want to honor and remember not only those lost to us, but also uplift those who continue to live and thrive in the face of HIV. Joining us today is our Aging Well Program team lead, Jim Clay, to help us do just that! Jim walks us through his work in establishing the Aging Well Program at CAP, the impacts of COVID on their programming, what long-term survivorship means to him, and more! Listen to the full episode now below! We also have the episode transcript available below for your convenience.
Intro: Welcome to Vibrant, an Affirming healthcare podcast from CAP, Our House, and Prism Health. I'm your host, Dustin Vance. And I'll be here sitting down with folks across our agency to get the inside scoop on the work they do to provide compassionate affirming care to all those in our community. Let's get the show started.
Dustin: Hey, y'all, thanks so much for tuning in today for another episode. We're really excited to have you here because today's episode is pretty special. Coming up on June 5 is National HIV Long Term Survivors Awareness Day, which is a day to recognize and honor those who have been living with or affected by HIV since the very early days of the epidemic. Joining us today is Jim Clay, who is our Aging Well program team lead, to talk a bit about how the Aging Well program came to be here at CAP, as well as talking about what it means to be a long term survivor, and what it means to age well with HIV. Jim is the storyteller through and through, so I think he'll introduce himself better than I can. So I'm going to pass the mic over to you, Jim, and let you tell us a bit about yourself and how you came to be here at CAP.
Jim: Oh, thanks, Dustin. It's always fun to talk about yourself, isn't it? Well, let me say first, just introduce myself. I'm Jim Clay. One of my key identities is I'm a widow. I was married. I spent time with an incredibly wonderful man named Mark for 20 years. And HIV claimed his life. And that's always been a really major factor to me in what I do and how I remember life. I'm 75 years old, and I've worked in HIV services for more than 35 of those years. So that's going to be nearly the earliest years. I've worked in a variety of settings. I worked first in Eugene, where I co-founded the Willamette AIDS Council. And later I was asked to move to Portland to take a position as the executive director of the brand new inaugural Ryan White HIV Services Planning Council.
So I was here for the earliest moments when the first money arrived. This was an incredible moment. And I'm not saying incredibly wonderful. I'm just saying it was just a lot happening all at once when there really had been no money available for services. And people were still pitching together, trying to put together go to their leftovers to bring their friends, meals from what they were left over from last night. And all of a sudden there were $6 million available. And as you can imagine, there were a lot of people who had ideas of what that $6 million could do. And they didn't all fit together real well sometimes. And people were desperate in some cases. So it wasn't a real friendly time. There was a lot of competition. There were struggles. But in the end, it worked out. And it really ended up funding a large, comprehensive system of care for people living with HIV.
In any event, I worked in HIV services for all those years. And then I retired. And I was retired for about six years. And I learned that Cascade AIDS Project was interested in supporting older adults as part of the program package. And they were looking for somebody to staff that, quite frankly, I was retired. I had retirement income. I was drawing Social Security. This was so different from the rest of my life, where I was really career oriented and looking for a good job that was meaningful to me, but also where the compensation was going to work well for me. And all of a sudden, I was at a place where I didn't really need the job, but I felt called to it. I thought, should I apply for a job? And retired? Retirement is pretty nice.
But I decided, okay, I'm going to apply for this and see what I can do. So I looked at myself, I said, well, it's for older adults, and you're old, so you qualify there. It's looking for somebody to oversee HIV services. You've done that for decades. So I thought, I'm pretty qualified for this, and I'm not the one doing the hiring, so somebody may judge it differently. And I could live with that just fine, too. But I decided I would apply for the job. I have to say, I hadn't written a resume in 25 years, so I had to kind of remember what that was. I haven't been on a job interview in 30 years. So I had to kind of remember what that was. And so eventually I was called for an interview, and I was flattered and pleased. And I found myself in a room with wonderful group of people. At least half of them could have been my grandchildren. So it was just a really lovely thing to come in here and feel like maybe I could help build the culture of this by introducing a new culture, the culture of aging, and see if that would be a part of it.
Dustin: Well, I think we all know how that interview went because of my intro and you sitting down with us now. Could you maybe tell us a bit about the process of building the culture of aging you just mentioned here at CAP and how that eventually became the program you now lead?
Jim: Ultimately, I was hired, and I was brought in here. My very first task was several months to do a needs assessment, and I was asked to go out in the community and talk to long term survivors. Maybe later we can get into defining that a little bit. But still, I was asked to meet with older adults who are living with HIV and AIDS, find out what are their needs, what are their experiences, what are their suggestions, and just overall, how's things going. And what does CAP need to know as we start designing some sort of program element that would bring support to them?
I found some people who were not very willing to talk about it. Some of them, because of the pain of it was a very difficult time understatement in their lives, and it was not something they wanted to remember. They were working to forget it, and they had not been successful so far, but they were trying to forget it, and they didn't want to talk about it. There were other people who were angry. And so I got a lot of rage directed at me, and I really was in a position then and stable enough in my life that I wouldn't take that personally. If they had the rage. I was glad to be somebody who would listen to that and see if I could make sense of it.
Some of that rage was directed at CAP. They were really unhappy with CAP. But then when we talked about it more, for example, I'm thinking of one interview where a man talked about he was angry at CAP. He was angry at CAP because his husband died. And CAP didn't really have anything to do with that, but it didn't have to make sense. That was his experience. And that was very helpful for me to realize. This doesn't all have to make sense. I just have to know what it is in order to help direct what kind of support might be needed and might be helpful. And particularly when I talked about that hi husband had died, I thought, oh, I can connect with this. I really get it. I know that experience. And so that was a wonderful and difficult time doing the needs assessment.
I did more than 100 individual and group interviews, and I learned a great deal. And I want to focus also to make sure that we didn't just talk about needs, what you need. Because that's really, as part of my career, I've always been strength based of not just looking at what you need, what you don't have, but also what do you have or what might you have if only things would align a little better? And so I asked people, what is their experience and what are their suggestions? And boy, a lot came out there, and that's usually when anybody, even who was angry or troubled, that's where it turned around, where somebody was listening to them. And it was a wonderful time. I was asked to create a final report that would indicate what are the strengths and needs and experiences people of older adults in this area living with HIV.
I began writing that report, and before that report could be completed, we learned that Gilead Sciences was asking for people to apply for a grant to actually build out a program that would support long term survivors. So we took the fragments of the report that I had written, what I had recalled in my notes from the interviews, and we wrote a grant, and I wrote a grant, and I would say I was surprised that it was fully funded. It was a three year grant, and I'm not sure how many people listening to this are aware that in human services, three years of assured funding. That's a gem. That's really remarkable. You really can do something where you're not constantly being tentative because this might all fall apart within nine months or something along that line. We had three years to make this work, and so we were really happy with that.
We had a little celebration of coffee and donuts, I think, is what we did, but it was still a wonderful moment. And so I began designing the program specifically to taking the recommendations that the long term survivors had given us. There were many needs that they identified, many experiences that we needed to know of, particularly people talked about insurance navigation and medication management, and housing was a really big one, and many needs like that. I was aware that CAP had a very vibrant program that supported nearly all of that. So I listened to myself like, how should I approach this? And I decided that I would set as a parameter for this the needs and interests and suggestions for the things that cannot be met anywhere else. That really seemed to be what needed to be the core of the program.
And that was about the time that we named it Aging Well. I went back to my background in marketing, and I thought, what are the two or three words that have to be a part of anything that I say about this? Well, it's about aging, and it's about well-being. And it could have gone the other way, of course. It could have been need based, so it could have been “Needing Housing” or “Medical Problems”. I mean, it could have been that focus, but Aging Well seemed to be the focus we wanted to take.
Dustin: So once you have the program name and focus kind of zeroed in, how did you start working on the programming for Aging Well? You briefly mentioned the needs and interests of your participants and how that informed the name. Did those largely become a blueprint for the work you were preparing to do?
Jim: So I zeroed in on what are those things that really are the things that were mostly unsatisfied. And it was like so many other unique populations or discrete unique populations where one of the main things is that the culture of that population is not being represented, whether that be within HIV services or medical services or childcare or whatever it might be. Wherever unique cultures are not being represented, bringing that representation to that venue is really what's most important. So there were many elements of the culture of being old, of someone who is an older adult, which I'll say one example, one of the common elements of the people that I interviewed was many of them were widows. And that's not an experience that many young people have. Some do, but many don't. And I also learned that some of these people that I talk to, they had been widowed two times, three times. One had been widowed four times during the darkest day in the 1980s. A lot of people died. Let's just be very direct about that.
So one thing I discovered was bringing the culture of aging to this organization would be a really helpful thing for the people that we are interested in supporting and for the organization itself. So I did the best that I could to do that. I identified, and then later was embraced by the organization, a few things that were interest areas that were not satisfied elsewhere that we could discover. And one was mental health support particularly. I mean, there's a plethora of mental health services available, but by the time you got to something that was geriatric health, there was no awareness of HIV and AIDS. The people that I talk to when I talked to them and explained who the population is and what they've said they needed, they were embracing the idea. They really wanted to help and provide support. They wanted within the larger mental health community. They wanted to build in concern and supports that would help this population. But they had never heard of it. They either were unfamiliar with it at all. They were not part of the pandemic in the 1980s, and many of them had never known anybody who had died. And I think up until then, I had never met anybody who just about all their friends hadn't died. Among the community that I lived in, death was just a standardized part of it. So we found people who wanted to bring support to this population through mental health, and they wanted to learn what was said and what are some of the ways in which they could do that.
And that was helpful, but a very large concern and experience that was very regular among the people that I talked to. I'd say in the 70, 80 or more percent of the people I spoke with was they were very alone. And I shared that experience. Many of them had been widowed. If they had been partnered, if they hadn't been partnered, then they had just a family based on community. Most of their community had died and they did not have biological children.
In Oregon, the experience of HIV is largely an experience of gay men. Now, I want to be very clear that that's not the only thing. And don't ever let that be a mistake. And we work very hard not to allow ourselves to forget the people that don't fit that. But still, if you look at the numbers, it's largely an experience of gay men. And gay men who are aging now were gay men who were younger and when they were younger, the idea of having children or having families or getting married or all the things that we start to take for granted now, it isn't that we wanted it and we're looking for it. We didn't even know that that would even be possible. So very few of the men that we were involved with had biological children. Many of them had been rejected by their families. So even those who still had living parents, many of them had been rejected. So they didn't have biological family. They didn't have a friendship circle because much of that had been decimated. They just weren't very much alone.
And it was something I could identify with. It was something that I had experienced myself, and there must be something to be done about that. But who's going to want to invest social service funding in helping people be friends with each other, helping build community? Well, the reality is that's psychosocial services, and there is interest in that, and it was startling to find that to be true. And so we began introducing a program for just that. In 2019 when we began introducing social activities, and it took a variety of forms. Some of them were support group, classic support groups. Others were potluck dinners. We had picnics. We had get together, go to movies. We had a regular, and to this day, continue to have a regular Thursday afternoon happy hour. We have a monthly lunch and learn where people get together. We bring in a speaker to talk about some topic of interest, and we have a brief presentation, but then the large part of this was a lunch and talk to each other and make friends and introduce new people. So we just began doing that and it was very successful, but we were just learning what to do with that. We thought that we had pretty much well understood what that program needs to do, what that might look like and how we might go about providing support to create it. Then March of 2020. Do I have my dates right, COVID?
Dustin: Yeah, COVID really impacted a lot of the services we are able to offer. How did the Aging Well program get impacted by COVID or what was your programming like during the Pandemic?
Jim: Well, this program that we had just built and we were just preparing to take it to scale. We had the skeleton of it built out. We had the start of it, and it was just time to recruit more people and go out and find more people, to build a community and find more opportunities to get out and do things together. All of a sudden, everybody was locked at home and we had to convert this program, which its intent was to bring people together. It was happening at the same time when everybody needed to be separated. So that was a really big challenge, and it happened overnight, virtually overnight, and we had to convert to Zoom meetings and such.
It was very difficult. And I have to say I think we navigated it really well. But at times we didn't know what we were doing, and anybody we talked to, they didn't know what to do. We were all figuring it out together. But in the end, we started setting up things as support groups. And so it's gone through that, and we're really arriving at time now. We're coming out of that now. So I hope that answers your question to some extent.
Dustin: Oh, absolutely. I think your experience in shifting to virtual programming and learning through trial and error is really representative of what a lot of us felt during the pandemic. And the added complications of working with population who doesn't necessarily utilize technology and social media in the same way as younger generations, must have presented some unique challenges as well. Perhaps we can dive into that a bit and talk a little about the culture of aging you mentioned earlier and define what long term survivorship is?
Jim: To start answering that question of who is a long term survivor, it might be helpful just to look at the language, just to start with where that phrase even came from. Back in the 1980s, people were getting sick. And even before being diagnosed until 1985, 84, 85, there really was no diagnosis other than just observing all of these opportunistic infections and the rapid health decline. But there really wasn't a test. The virus hadn't been identified until two or three or four years into this pandemic. But there was one observation was that there are some people, a small subset of people, and I don't know the exact number, but maybe we're looking at five or 10% of the population that later were diagnosed with having HIV. That small percentage of people were becoming ill but then stopped, did not progress, did not progress through the various stages of having opportunistic infections, of wasting, of rapid health decline and death. They were not going through that. They were stopping. And the term that was used in the 1980s for that was long-term non-progressors, people whose HIV illness stopped at a certain point rather than continually declining to death.
And there was just an observation. Nobody knew really what was going on anyway, and much less why were some people not fully developing all the symptoms that go along with so many other people? But so we had the term long-term non-progressors. And then over time, I think people may even have forgotten that term, but over time they're arrived, and I'm thinking this is maybe I'm not sure if I'm the right historian for this, but maybe sometime in the early 2000s, early 2000s, people were observing some people really have survived and have lived with this virus for a long time and are still making it. And then, of course, going back a little bit in 1995 when we came up with all the antiretrovirals which started helping people live healthy lives and restore their health. In many cases, we saw that there were people who for a long period of time had lived with this virus. And that whole idea of long time became a phrase that was used a whole lot. And then there was just some moment in there when it became popular culture to talk about, I have survived, I am a survivor. And that has been true in other cultural frameworks as well of women who have experienced sexual violence, for example, there was a time when it became a contemporary phrasing to talk about “I have survived this”. And I'm a cancer survivor. I am an abuse survivor. And people began to take a strength approach rather than talking about being a victim. So this idea of being a long-term survivor was a phrase that picked up at that time. Looking back a while back, there really was no designation of what that meant right now.
Actually, let me just say that evolved. There's at least two or three or four or five different understandings of what is a long term survivor. Who is a long term survivor, what are the characteristics? And I want to be really clear for the Aging Well program, however anybody defines it's, the right definition, we're just fine with that. And on top of that, that's really not even a clinical designation. It's more of a social designation or historical.
So sometimes that phrase is used as a criteria for funding eligibility if there's a certain program, mental health program that's available for long term survivor. I have seen support groups that said this is for long term survivors, defined as somebody who's been living with HIV for ten years or more. Then I've seen other that says this is a program that is for people who are 50 or older then I've seen others that said this is for people who were diagnosed with HIV before antiretrovirals became available in 1995. So this is somebody who's lived in the earliest years when there was no treatment, has gone through that moment when there was treatment, and now is thriving more after receiving the treatment. So you can hear that there are a variety of different definitions. One thing that's come out of that that I think is really helpful because it distinguishes two very discreet populations. There's a term it's not widely used, but we do talk about it people who are longest term survivors. So these are people who will report very often with great pride that they have survived 30 or 35 and sometimes 40 years with this virus. And they are the longest term survivors.
As you know, CAP has a contingent in the pride parade each year. And so the Aging Well program this year is going to have a contingent in the parade. And people have talked about they wanted some indicator of how long they've been living with HIV, and they wanted on their Tshirts to say thriving since 1984, survived since 1987, something along that line. And I'm not sure exactly how we're going to execute that or if we are. But that was a moment where people were talking about their pride of having lived through all of that time period. Now there are other people who are more newly diagnosed. I'll start off with, say, I'm 75. So somebody who's newly diagnosed and only been diagnosed for a short period of time, for a short period of time, to me, it could be 15 or 20 years. But still, for somebody who was diagnosed post 1995, post the antiretroviral discovery and implementation, they're really living in a different world. When they were diagnosed, there was a treatment available for them, and they may or may not have gone through that period of time of oh, now I'm going to have to tell you of playwright William Hoffman talked about the period of time of the early 1980s was a period of mass death, brutality and human indifference. And I think that sums it up pretty well. I think it misses the part where we talk about that there were heroes and Angels as well, but still, the mass death part of it was there. And someone who didn't experience that, no judgment whatsoever on them or their experience. But just it's important to note they had a very unique and imprinting experience that they will have for the rest of their lives. And it's been described in poetry and song and in people's conversations about the equivalent of wartime, of living where just everyone is dying. There are many different definitions of longterm survivors. We allow people to define for themselves if they've been living with the virus for a short period of time, if they don't want to disclose, if they proudly are proclaiming that they want people to know they've been living with this virus for 40 years, we embrace and welcome all of that.
Dustin: Well, it sounds like you've been really successful in cultivating a long term survivor community that is vibrant and diverse and not only living with HIV, but thriving with HIV. So I guess I'm curious, what does success look like for your program? Like, how do you and your program participants celebrate together and find moments to connect and really cultivate a deeper community?
Jim: Well, that actually brings up two important matters. One is what is success? What does it look like how you know it when you run into it, and the other is who gets to define it first? Let me go to the who gets to define it in the same way as I don't take too seriously. This idea of long term survivorship is based on program eligibility. I really want the definition of who we are, how we live, how we want to live. What are we going to be doing to be coming from the community and not from philanthropy and not from a social service agency? There should be people themselves deciding for themselves looking at how one defines success and how who gets to define the success? To me, that's what's important. And I've already touched on the matter of social service agencies should not be the ones who define success, and the funders, the philanthropy should not be the ones who define success. And yet, on the other hand, if somebody is making a $5 million investment in something, they really ought to have an idea of what is accountability. And when are we being successful? When are we not? And so there's a little bit of tension between that I'm on the side of allowing the community to decide what's successful or not. So from that, let me describe a success that I've recently seen, which to me probably in a program report that I have to write monthly to our funders when I talk to the government agencies, this is probably not what I would pitch the most. But to me, this was the moment that I looked at this and said, we're being successful here. We've had struggles other places, we're being successful here. I saw a post on Facebook. This was three or four people who are part of our program. And they were talking to each other through some post, social media post. And there was no reference to aging well, there was no reference to programming or social services. They were just planning what are they doing for the weekend? They were just talking to each other. And then there was a follow up post. After they had gotten together, I think they went to the performing arts center to see some exhibit. What I saw was one was a man who I had met two years earlier. He had just moved to Portland. He found some Advertisement somewhere, and it says, Call Aging Well and they can help connect you to community. And when I spoke with him, he was utterly, completely, totally, 100% alone. He had just moved into an apartment the week before. He didn't know anybody in town. He didn't know how to meet anybody in town. He had a disability that limited his mobility. So it was hard for him to get around and just sample a lot of locations to see how to try to find people. So we welcomed him into the Aging Well community, and he started making other friends. And he's become somewhat of a centerpiece of the organization. He's very social, so he's really been very helpful in helping other people connect. Long story short, here is a man who got to town. He was very alone, even somewhat frightened about what was he going to be doing? Was he going to be living alone by himself? And all of a sudden now he's a really big part of the community. And now I see him on Facebook talking to other of our program participants, talking about, what are you doing on Thursday? Let's do Friday. All of a sudden they realize we have built a community. There is a community here. And right now they're getting together for the weekend. They don't even need us. To me, that was the greatest success of they don't need us. And so increasingly I'm trying to look to a direction where the program continues. But a large function of the program is to bring new people into it and bring new people into the community and build and enlarge the community and then hope that there'll be all sorts of offshoots they're on their own of once you have a friendship circle, once you have a community, there's all sorts of things you can do. You don't need a program. You live your life. I think one other example of that was one man talked about that he had recently gotten a cancer diagnosis, and he was very optimistic about it. And he was convinced that he was going to be able to get the treatment he needs. And he just was confident that he could approach this in a way that was going to work for him. But he needed transportation to the hospital once a week for some therapy that he was receiving. I don't recall exactly. It was some sort of radiation combined with something else. I'm not a doctor, but I know it was significant and significant enough that he needed transportation. This was not something that he should be taking a bus to go to, which would have otherwise been his option. So typically within a social service organization, what will happen there is your case worker will identify you need medical transportation. And there's probably something in the program that's set up for that. You make arrangements and I don't know, you get a referral and you do all the things to get medical transportation. Well, here we're sitting at a happy hour having, what are these jalapeno poppers and mozzarella sticks along with their beverages. And he's talking about that he needs transportation. Three or four people jumped in and said, I'll take you, I can go. So once again, there was a friendship circle there. There was a community that was providing support. There was no need to find that transportation support within a social service agency. And quite frankly, that's not something that aging well primarily does. I mean, there are times when we do we'll hire somebody to lift. But what's wonderful to see is for the most part, when the needs arise like that, we give a venue where people can talk to each other and meet each other and share and where there's been enough engagement and trust building, where people can talk about the difficult moments and what they need and be open about it, and the community rises to vacation and provides it for them. To me, that's what it's successful is when something takes place. And I can feel like we had something to do with creating the environment where this is happening. But they're not turning to us saying, can you give me a voucher for transportation. Instead, they're around all their friends and their friends are saying, hey, I'd be glad to take you. So, yeah, to me, that's how I define success.
Dustin: I think that's a really great way of defining it. It reminds me of the age old adage that many of us nonprofit folks have heard, which is we're working ourselves out of a job like our goal is to eventually get to a point where the folks we serve no longer need us anymore and they can live and thrive on their own. So maybe as we close out, what final word would you want to leave our listeners with in regards to aging well and the long term survivor community?
Jim: Yeah, I would say that it would be easy to get into focusing narrowly and talking about long term survivors and HIV experience and all. To me, what I like to leave with is an understanding of aging and older people in general. I work in an environment here at camp with younger people, and I would hope others would say that we're good friends and we work well together. At the same time, the experience of being old is part of my culture, and my culture is not much represented here. My culture is not represented much anywhere except maybe at a senior center or some seemingly segregated area where old people go. But the integration of aging adults into the overall world does not happen a whole lot. And a lot of the language that's used, a lot of the communication channels that are used, at least I would say at least half of our population and certainly the older ones, which are in their seventy s and eighty s, more than half of them have never used social media. At least some of them cannot or do not use email. So electronic communication doesn't work well. So when I look at that, there are activities they might be interested in. There might be ways they can meet other people. How is it advertised? It's advertised on social media that's not going to penetrate their world. They're not going to reach that. So I think what I'd like to leave with this understanding that old people exist, that very often you will hear people talk about the great wisdom of the aging. No, old people are just as terrible and as wonderful as anybody else. But we do exist and we live in a world and we bring a history and we bring traditions and cultures. And I wish there was a better way in which we could integrate that all into the world together, and we're working to try to get that started.
Dustin: Well, thank you so much for joining us today, Jim. It's been such a delight to get to sit down with you and learn more about the incredible work you're doing in the Aging Well program and just to get your thoughts and perspectives on what it means to age, what it means to age well and what it means to live and thrive with HIV. If you want to learn more about aging well, please visit them online at www. Agingwell. Nw.org. There you can learn more about the many social groups and activities they do as well as get some insight into Jim and Craig and learn about just the incredible people behind the program. Thanks so much again, Jim and we can't wait to talk again soon.
Jim: Thank you, Dustin. Well, that's our show for today, folks.
Outro: Thanks so much for tuning in for another episode and we can't wait to share a new one with you really soon! In the meantime, if you have questions or comments, feel free you to reach out to us at comms@capnw.org. Until then, stay vibrant.
About Aging Well
Aging Well is a program of Cascade AIDS Project (CAP) that fosters a participant-driven community in the greater Portland, Oregon, metro area, together with our partners and collaborators. We create a sense of hope and belonging among aging adults living with or affected by HIV. Together, we forge the connections, support, and social intimacy each of us needs as we remember the past and look ahead to the future.
About Cascade AIDS Project
CAP is a non-profit organization that was founded in 1985 as a grassroots response to the AIDS crisis. As the oldest and largest community-based HIV services provider in Oregon and southwest Washington, we seek to support and empower all people with or affected by HIV, reduce stigma, and provide the LGBTQ+ community with compassionate healthcare. We do so by helping to ensure the health and well-being of our program participants each year through health, housing, and other social services. When the need for affordable, accessible, and culturally affirming primary care services was identified as a community need, we responded by opening Prism Health in 2017. More information can be found at www.capnw.org.
