Craig Lustig Interview Part 2, April 29, 2021

And in the end - That experience in that first year and all of the pain and all the good caring, truthfully there's a lot of good caring in there, but at the same time, all the things that made me feel - I was pretty angry. I was pretty angry. I think I've met a lot of - Whether it's cancer or in the HIV community, there are a lot of us who are angry.

And I think that part of - I think that you have to figure out what to do with that anger. And so for me and hopefully for other folks who have come through that transformation, It's like, I'm going to take this anger and channel it into something. Why am I angry? I'm angry because I don't feel like I have any voice, right? I don't feel like I can be in charge of these decisions. I don't feel that I'm given options and then given time to say, Here's what I want to do, here's what matters most for my life. So I think that in that second phase of my treatment before I even said, I'm going to do this, I had to take that time to gather more information, reflect on all of that.

Yeah that makes sense, especially what you're saying about anger, really resonates with a lot of narratives I've read within AIDS literature. I'm curious if this is something you were able to resonate with some of the people you cared for or whether this informed your activism, or were you still working as an intake clinician at this time?

I think I was. I probably had to stop at the point that I was going to be going back into treatment. But you know, I did my best to kind of to keep up with it.

Also, did you take a pause then during this time from -

I did because my immune system in the next phase of treatment was going to be very, very knocked out. And so it wasn't going to be a good idea for me to be around them or for them to be around me. Maybe it was the willingness to sit across from somebody and say, I get it, I get you're pissed, I understand you're angry as hell. That Coco (?), you didn't do anything wrong, you know, you are just living your life and this happened, because that was very much a parallel to my own experience and that's okay. Right, that's okay.

And as I said, the question is - and I'm no trained expert - but how can you help somebody move from that place of anger and frustration, and say, Okay you know the table is set as it is and now what are we going to do? And what's available to me and what are my options?

And maybe actually with that second diagnosis that I had in some sense that, at least from a cancer perspective, you get diagnosed and you just assume. Oh, everything's going to be fine. There's going to be some miracle cure and I am going to come through this, no problem. Particularly when you're young. And then you get it again and you say, maybe that was not the way to approach this. That was a very important change of perspective for me, that I needed to deal with this from the perspective of, I may not come through this, or I need to make decisions about how I will come through this.

So the notion that I was going to go back and have a whole lot of cranial radiation but be left with all sorts of deficits, that was off the table for me. I was unwilling to do that. I did not want to have my life compromised so much that I could live my life but I would be in such a compromised state. I'd much rather say, I've lived my life to its best and if it ends early, that's just my story.

I think that for many of the people that I met with HIV, part of it was listening to their stories. Maybe that was the whole intention of this idea of having a volunteer do this intake process because you were not there to talk about, like, "Oh, tell me what you need, Why you think you need housing support." That wasn't really what it was about. This was a conversation, which is, share your life story with me so that I really understand you. And I think that's maybe why with many of the clients it was a unique and really quite -Whoever came up with this concept of making this sort of conversational process and understanding somebody at a pretty deep level on a couple of hours, that was really important. And again, it gets back to the notion that we are all unique and that how this life threatening illness is going to affect you. It's not going to be the same as anybody else.

I'm really curious also to know how access to resources and healthcare effects the conversations that you're having. Also just then with the evolution, and I would assume the increased access, how that affected conversations as well, if there is any effect.

Really good question. I think that maybe there was because New York City had been - The impact in New York. City was so significant that the response was quite dramatic there. That being said, my job wasn't to figure out how to get you into some clinical trial or get your health. I would make those notes, but that wasn't - I had no authority. I had no control over that.

And I think maybe that's part of it too. The conversation were always about, like, I'm here to listen and for us to have a conversation about, within the context of what this organization offers, what we can do for you, and always to note those things that were happening in somebody's life. So if they were really struggling with access to healthcare services, there were public hospitals and they were places where people could go but they weren't necessarily so great. Yeah.

Did that make it difficult as you were talking to a person, maybe what they needed wasn't going to be at the level which it should have been? Or it wouldn't have been as good of care or resources as they deserved?

I think maybe because at the time - Two-part answer. Maybe the first part is that there was this guilt of that I had. So I'm at one of the best-known, world-class, comprehensive cancer centers in the world getting my treatment. So I am truly getting the expert, - there were other issues there around care that were not good, but it seemed from a medical standpoint, I am getting absolutely the top, I'm getting the gold standard.

And there were people that I was dealing with in my HIV/AIDS work who were basically getting fluids and very minimal care in a hospital setting that had an open ward and was not super pleasant. I think that the contrast was that, at least at the time, there just still weren't that many useful therapies. There were starting to come online, but they weren't - But certainly I understood that there was a real difference in what I was getting versus what they were getting. And you really could come to understand that the - What was happening in what we would call from a health equity standpoint, as we would probably talk about it now, was really important. These people were still being shunned. The people who were caring for them were extraordinary healers, but they certainly weren't getting access to everywhere they maybe should have, and that was a very big issue. That's sort of a different level of what - as there were therapies that were emerging, why weren't we doing more to get them out to folks?

All of the things that I learned when I started working at NIH and a little bit of history around how initially the federal government was and the Reagan Administration was completely ignoring this and then people started sort of banging on Dr. Fauci's door and saying, You have to do something. But that kind of activism had to happen. And I think there have been parallels, and we talk about sometimes how parts of the cancer community that have done some of the same things have really tried to mirror reflect on the experience of the HIV/AIDS community, in terms of how you think about this.

But there were certainly disparities and a lot of discrimination. And maybe we were - I was only lucky that I was working with patients in New York City where there were ultimately just many more research because there were so many patients.

I'm really interested having lived myself in both New York City and DC. And you noted New York City was an epicenter of sorts and it had a lot of resources. I'm curious how working in New York City compared to like subsequently working in DC and just the differences in the type of care available to patients in both cities. Maybe then we can transition a little bit in talking about more of your time in DC and what that transition was like.

Well I mean, if you're just talking broadly in terms of healthcare access, there's many problems in New York City as there are anywhere. I think that the size of the population of New York City means that there are probably more people affected with not having access to quality care. And maybe there's therefore a greater population to raise their voices around that.

Something that we talk a lot about in the cancer community is that where you are treated makes a big difference in outcomes. There have been studies done looking at young adults treated for, let's say, hematologic cancer, leukemia, treated in a children's hospital versus those same cohort of young adults, you know, same age group treated in an adult facility. The population treated in the adult center doesn't do as well. It's very complex. To some degree there are a lots of very obviously socioeconomic factors: where you live, whether you are insured, all those kinds of things.

But sometimes we know that a lot of this is related to expertise, and where's the expertise? So if you live in a rural community and you get cancer or any sort of rare disease, the best place for you to be treated is probably in some urban center where they have a group of people who have expertise with this. But if you don't know how to get there, you don't know that exist, you won't get that. I think that in Washington there are lots of parallels with New York, it's just sort of it's different is difference in size.

Were you working with AIDS patients in DC? Or were you just primarily, once you moved here, working with cancer patients?

So when I came here, I worked at the NIH and sort of worked on a variety of different kind of environments and disease areas. Since then professionally most of my work has been in the cancer community. So I've worked with childhood cancer patients and led an organization that focused on those, and then more recently for about the past eight years, working with gastrointestinal cancer patients.

And I think that we certainly see the differences, whether it's by geography, with the type of center you're going to, we know there are differences in outcomes and I have to believe that's pretty much a parallel situation to what's happening in New York. So if you live in some kind of poor neighborhood in the outskirts of Brooklyn and you get HIV/AIDS or you have cancer, finding your way to the right treatments is is just harder. We know that our health system is not set up well to focus on equity and focus on access.

Sometimes I used to think that maybe New York City had figured it out a little bit better. I'm not sure that's the case quite honestly. I think that the dynamics of the dynamics, at least - New York City is such a vast and very dense metropolitan area, whereas the DC region is less so. We see some of that where we get patients who are coming to us from farther afield because they find us. And so So I guess there's lots of parallels.

That was really helpful and I'm curious because you touched on this a little bit, but the evolution of care too and how the work that you do now kind of compares and contrasts the care work you did in the past. Yeah, the care work you did initially when you were first starting out New York versus the care work you do now. And I'm curious to hear more about the evolution within the field too.

It seems to me whether we're talking about the volunteer side of me?

Also quickly, would you clarify what date or what year it was that you moved to DC.

So I moved to DC in 1998.

Got it. Okay. And please continue.

Yeah. So -

Just about comparing and contrasting the care work you do now versus your early experiences of care work.

I think that there's sort of a - Our care context evolves in some sense alongside of the medical developments. As we've gotten much improved, obviously much, much much improved HIV/AIDS treatments and they become more and more accessible, the needs of patients are going to change. I think there's a great parallel on this to the cancer experience. So what does it mean to be HIV-positive and on some range of therapies for 20 years, for 30 years, for 40 years?

So in my case, my treatment ended about 26 years ago. I had my last treatment on April Fool's Day of 1994, something like that. So what does it mean for me and what are my care needs medically and otherwise as I age, and what are the intersections between natural aging and your disease experience? I think that's something that I'm experiencing quite personally, but I think about it in how I work with cancer patients or think about other people who are dealing with other -

I know many people at this point who have been HIV positive for many, many years and have been on that life-saving therapies. But we know that there can be, in the cancer context, what we would call long-term and late effects. That means, what are the effects that are related to disease and what are the effects related to treatment? And I think that's a really - As we go from thinking about things like AIDS and cancer from terminal diseases to more putting them in the chronic disease space with diabetes, let's say, that's a big - That's a change in thinking that needs to happen across the board.

So, what are the needs that I'm going to have medically? What are the needs I'm going to have psychosocially? What are the needs I'm going to have in terms of, I don't know, a whole range of other kinds of aspects of my life and how will that evolve with the history I have, or the history that somebody has who's HIV-positive?

That's really interesting what you noted about the change from terminal to chronic and how I imagine that's a new issue. I'm curious the way in which that also then coincides with networks of care as people are going to need care for longer now, having chronic pain. And if within your profession, because you work - You are a formal, your work within a formal sector. Do you interact much with informal or do a lot of your patients have also supplemental informal networks of care? Whether that be friends or family, and do you interact with those people much?

For sure. I think that there are those very informal networks, friends and family. And understanding maybe you're - If I think about it from the context of my current work with gastrointestinal cancers, I mean, these are very burdensome diseases that often leave people with significant life challenges even if they're, quote, cured. So what does it mean to have your your digestive system impacted in really very significant ways for the rest your life? And how do you manage that? And I think families and caregivers are vital to that.

I think also that if you take the young adults with cancer, and we're seeing a lot of them, there's been a significant increase on a percentage basis in the number of young adults getting colorectal cancer. We're not exactly sure why. But there's a whole litany of things they're experiencing. They're thinking about fertility. They are thinking about family. They're thinking about their professional lives, their relationships, and that's maybe different than somebody who got cancer as an older person and is at a different stage of their life. So we work with a lot of community-based organizations to develop our programs and things like that.

And I think there's probably a lot of parallel there in the HIV/AIDS community because if somebody is no longer dealing with the treatment related to that life-threatening disease, but now they're in that chronic disease phase and they have some disability, that doesn't mean they - We still want them to be a productive member of society. How do we help them to get there?

I've had testing to evaluate how the treatments and the disease I had has affected me neurologically. I know I have some slowing actually, motor changes that affect me, but I've been able to - and mine are fairly minor, and so I've been able to function well. But I certainly know patients who've gone through treatment that has left them with much greater deficits and we can't just throw them away. We can't just - This notion that -

It used to be, you finish your cancer treatment and you'd ring the bell on the clinic and they say, Good luck. And once you hit that five year, mark of survival that was considered to be like, oh well now you're cured and everything is just fine. Well, that's just not true. Our health systems, I know from working in a health system, are full of wonderful and very caring people but are very, very slow to change. And I think that's where the continued activism of people, and I was thinking about this friend of mine who I met -

During my graduate school experience I did a summer internship and I worked at a AIDS service organization in California, and I met this woman who became a lifelong friend, who is bisexual, and comes at this whole experience from that perspective. And we used to talk a lot about the value of being inside the system or outside the system. Not one is better than the other and that -

So, you know, I think that, let's say - When you hear activism, I think for a lot of folks, that means I'm going to get my my placard and I'm going to go out and march in the streets. Well, you know what? I've mostly not done that my life and I still consider myself to be an activist. And so whether that's me working in systems and saying to the numerous white male physicians I work with, "You got to wake up. You're dealing with a person of color, you're dealing with a woman, you're dealing with a gay person. Try to open yourself up to being more sensitive to those things." That has a lot of value. Or if I'm working for a non-profit in this volunteer role, quote, I'm working inside the system, but at the same time, it has value. But at the same time those people who are out in the streets shouting have equal value, right? Because we're just pushing on the system from a different direction. All those different flavors of activism are really, really important.

I'd love to talk a little bit about my experience of recent years.

Yeah, let's do it.

In the fall of 2012, my spouse and I went to an information session that the the DC government was hosting because they were trying to get more gay and gay friendly families engaged in learning about foster care and potentially becoming foster families. And we went to this information session, we learned that there are youth who are gay or who are questioning, who are in the foster care system and are really suffering because they're placed in homes that are not accepting of them and not supportive of them, and it's not a safe space. And so the point was that the DC wanted to train and license more families who could do this work.

So we decided to do this, and we went through. We weren't parents, and we actually didn't expect to be permanent parents, but we wanted to be there for youth who needed that safe space that we could offer to them. It was an extraordinary experience for me in terms of bringing together lots of other life experiences. And back to this idea that from - It's not always, but from a lot of anger can come lots of positive change and positive perspective. And so a lot of our training was focused on two topics: trauma and loss. I would leave these trainings every day, I would say, "I can't take it. I can't do this much trauma and loss, and I don't know if I can be a parent because it's all about trauma and loss." But what you come to understand in this is that, yes, you're dealing with kids who have had very difficult life experiences and have experienced a lot of trauma and loss, but that's not the endpoint of their lives.

Trauma and loss can lead to - There's always a flip side to all of this, which is that there can be empowerment, there can be positivity, there can be new relationships. I think that maybe at this sort of later actualized point in my life, becoming a foster parent, and actually in a peculiar way, not being called upon to care for youths who are LGBT or questioning, our first placement was a two-year-old.

But at the same time, it again was a class in expanding my own sense of humanity and my own sense of that none of us are going to escape this life without trauma and loss. It's just part of the life experience, but that the opportunity really is to, for ourselves and for others, to all be activists, back to that word. To say, how do we, how can we touch another person and say, I know you're hurting, I know that your life has been hard, but I'm here and I want to listen and I want to help you think about what's on the other side.

I'm really seeing how being a foster parent, a cancer patient, and also a caregiver for both people with AIDS and people with cancer is connected or meshed in a really beautiful way. I'm wondering if you would be able to speak more on the way in which your previous experiences have informed this new part of your life? And would you consider your work within the foster system then to be like how you are involved in LGBTQ activism in DC, is that a part of your activism? Would that fall within your -

I think it is very much so. So there's this - Again we go back to that piece of, do you want to be on the inside or do you want to be on the outside? Do you want to work within the system to change it? Where do you want it? Where are you comfortable coming at it from? There's no right or wrong.

I think that there are these other phases that we talk about in activism. So this idea of self-advocacy. That's the starting point for people who are dealing with a life-threatening disease, or any sort of trauma in their lives. So, how do you find your voice? How do you come to the place of feeling empowered that you have a voice in your decisions and that people are listening? And that's maybe a starting point. And then from there another place you go to is that you find out that your friend has is HIV-positive or you have a friend or a cousin, or a friend of a friend of a friend, who calls you and says, Well, this person has cancer. What can you do? Can you help? And you're touching one person. And then you may decide you're going to get involved in a broader way, whether that's just being part of a larger community organization and effort or maybe its policy changes and things like that.

So for me, at least my experience in that way, so I'm now on the board of a foster and adoptive care organization. Which is obviously a very different experience than sitting and talking to a kid who has experienced trauma and is in the foster system, or sitting by the bedside of somebody who's HIV-positive and dealing with thinking about those life challenges. But I think it's an evolution in people. One is not better than the other. They're kind of stages and you can go back and forth, but for me it's not like -

The history of the HIV/AIDS movement is different than what's happened in the cancer movement from a caregiving and activism standpoint. But I don't think that the core skills and activities are different. Caring is caring, learning how to be a good caregiver, learning how to engage in that activism is hopefully kind of a positive life skill, if you will. And so again me, I had this, unique - unique is maybe the wrong word, but my individual life experience is at the intersection of all these things. So maybe being able to talk to a gay youth who's scared about coming out to the family. Or maybe it's talking to my ten-year-old son about the things that he remembers from his childhood that make him sad.

If I've done anything right, it's been at least trying to focus a little bit on integrating those experiences. And again, nothing is right or wrong here. It's kind of going on the journey. And then, at least for me as I talk about it to this day it's all therapeutic. In the days that I'm my most cranky about whatever is not working in my body or whatever's not working in my house or whatever's not going well at work, I think that I try to continually reflect on those things that have been - the people have been supportive of me, the people I've been able to just be supportive of who don't know it, but gave so much back to me, and how hopefully I can carry that with me through my life.

I think that would be a great place to end it, but I don't know if there's any last thought you'd like to include, but I think that was really beautiful and thank you so much for sharing.

I kept thinking, I really want to talk about our foster care experience, because it was so driven by this HIV, the gay activism piece. We kind of fell into it, there was no sort of intentional like, "Oh, we know there are these youth who are troubled and we need to help them." It was, it was very much about like, "Hey let's just go to this information session to learn."

Cool.