Men’s Health Foundation Podcast Episode 11 Transcript

David: Good morning, Stephanie and TJ. Thank you for being here today.

Stephanie: Good morning. Thanks for having us.

David: How are you feeling?

Stephanie: Good.

TJ: Good.

David: Good. You know, as part of our MSK team focusing on providing care with people with HIV. I want to just, first, you know, get a rundown of the work that both of you do, both as the MCC program manager, Stephanie, and the D2C program manager, T.J.

And T.J., thanks for being back on the show. You're here for our World AIDS Day episode a little while ago.

Could you tell us a little about the program that you work in and the impact you've seen of the work that you do there?

Stephanie: Yeah. Okay, so, hello everyone. I'm Stephanie again. I'm the manager for MCC, which stands for Medical Care Coordination. And we have a team that consists of a patient care manager which is a social worker. We have a medical care manager which is a nurse, and we have a case worker. So basically, we are here to support, people living with HIV to help address any barriers to care that, might come across their health journey and, just provide– supply resources.

We provide brief interventions to help, move things along if there's any outstanding need. That, again, would be a barrier to their HIV care.

David: And, T.J., how would you, you know, share what you do as far as the D2C program and your aspect of the work on the team?

TJ: Hi, everyone. Back, back, back again. I am the D2C program manager. D2C stands for “data to care”. And essentially what we do is outreach for those who have lost, have been lost to care, or they're at risk for a lot of care. and also those who are newly diagnosed or returning back into the clinic, for care.

And we kind of serve as that bridge for them and what's unique about the program is that we use different data sets to identify these folks. So we, we compare this data against the county's database, but also what we have in our local EMR, also in our coroner's office, the county's jail system as well, or just really any data that we can find, to kind of locate these people.

So sometimes it's not that we're locating where they are. We just realized, okay, maybe they, they are taking a stint in jail for a little bit, and then in three months, we'll reach out when they're out or we realize, okay, this person has passed on and they're seen. So we should now inform our clinic that they should start reaching out. And we just use that information to try to use our efforts the most accurately to find the people who are actually lost.

David: Okay, okay. And I think what's so interesting, when I've heard you talk about what you do, is going out into these communities to, you know, connect with people where they're at. Could you tell me about some of the experiences you've had doing that, like where you're going and, and what that's like when you head out there?

TJ: Yeah, what's interesting is about our demographic. I have not had a huge need to be in the field as much as I have in some of my other experiences as a manager but every time we go onto the field, it's always an interesting, needless to say, experience. So one of my, the best times, the very, very first time we went out to the field, we went downtown, not too far from Skid Row, but some lower income apartments.

Nice guard at the front, he let us up. We just kinda said that we’re a clinic, a community organization. And they want to help, they want to see the people get help so they let us up. We go through, to the door, there's a dog barking, but no one's answering the door and so we kind of just leave a note, as we typically do, and went downstairs.

We're used to that happening because field work is something that is tireless, and you have to keep doing it to find success. But then we got downstairs and then the same guy who led us up, the guard, it's like, wait, I think, are you looking for the guy in this apartment? And I'm like, yeah. He's like, oh, I think he just went back up.

He might have just came back. And I was like, okay, so we just went right back up again and we saw that the letter was gone. And so was like, okay, he must've came inside the house so we just knock on, he comes to the door, he's like, “Oh my gosh, like, I've been trying to contact you guys. I was in a hospital for some time. I just got out.” They just brought me back here. I need my medication. I didn't have a way there. I don't have transportation, and I kind of lost my cell phone, so I didn't have you number anymore, and I didn't know how to get back into care.” And so that kind of just put a little light to me like this.

These are opportunities that actually do happen. There are times that people just don't know what to do. And sometimes we have to meet them exactly where they are at home to, help them and bring them back into care. Because it's not that they don't desire to. They just honestly don't know where to begin.

David: And what does it, do you feel like about, you know, with HIV care specifically what are some of those specific challenges that make this program so important?

Stephanie: Yeah, there's a lot of barriers that people sometimes tend to overlook. There's a lot of people that don't have transportation. So we provide transportation. There's a lot of people that still don't have cell phones or internet access. So, they need reminders for their appointments, not just coming from, like, emails and all that stuff. There's a lot of people that are unhoused, and so, big deal with my program with the MCC is to try to look at the hierarchy of needs of what's going on.

It's like, okay, we got you in to see the doctor. That's cool. You got your script. That's cool. Where are you going to keep these meds? Because you're sleeping at a bus stop or in a park or on somebody's couch. And we also try to look holistically, like, okay, you got a safe place, but not ideal to stay, but the person that you're staying with doesn't know about your status.

So you don't want to have a big old bottle of Biktarvy sitting in your suitcase or your knapsack or whatever. And they look and say, “Hey, what's this?” So we have to look about everything that again, might be a hindrance for them to not only staying engaged in care and feel safe, with their status. There is a lot of people that have, different family situations.

And again, they might not know their status too. So they have to kind of like hide their visits. So obviously when we call for follow ups or for engagement, we're not like, this is the HIV, case management program, you know, so just being respectful of people wherever they are. And however they are and however they present to us, is what we have to do.

David: What do you feel like is at stake right now in this current climate for people relying on these services?

Stephanie: Everything.

TJ: Everything.

Stephanie: Everything. A lot of the work that both of our programs do is so important, but like invisible. So when he's going, doing outreach or looking at the data from all these other things, people can't see the impact or the direct work that we're doing. When my MCC team is doing their brief interventions or their counseling with the patients, outside folks can't see the little tiny, tiny chipping away that we do with these patients.

So having programs like this is just, it's imperative. Like there's, there's no way that these can go by the wayside because, I've been doing MCC, as a patient care manager and as the manager for a combined 10 years and I've been working in public health, since I got my master's. So, in some way, shape or form, I have been working with this population and, just seeing how someone can come from their very lowest moment getting their HIV diagnosis to thriving is just, it's just a constant reminder of why I do this work and why I want to stay in this work, and why it's so impactful.

And also, the beauty about MCC is that there is a range, of people. So not everybody is unhoused. Some people are at risk of losing their housing, some people are just fine, but they might have food insecurity. Some people are good with food and shelter, but again, they have not disclosed their status to anyone. So a program like this with the different, disciplines can look at the patient wholly to try to eliminate any barriers they might have so everything is at stake right now.

David: What are you hearing from, you know, colleagues in other organizations, other public health professionals? How's this impact, how's this moment impacting their ability to provide services right now?

TJ: Yeah. It is a very scary time, internally and externally for us because our clients literally lives are at stake and so it makes us very uneasy because that's the reason why we're here. Ultimately, that is our goal, but also a lot of our colleagues, their personal lives are at stake. They're, they're at stake of losing their livelihood, losing the opportunities that they have always kind of had.

Like Stephanie said, she's been doing this for 15 years. I have been in this field for what is it, 27, since undergrad. And it has always been a thing like the HIV nonprofit sector has always been the thing. And so it's like, if one opportunity doesn't work out, you know, that you can always go somewhere.

That has Ryan White funding, that you're going to be doing this type of work, you become an expert in these places, and then it becomes kind of like a life. It becomes your colleagues, it becomes your community. It becomes your LinkedIn profiles just full of these same things. Most people don't want to look at HIV all day. But for us it’s like, this is our thing.

And then you wake up one day and some man, who gets elected is just like, “that's not important anymore.” And it's just heartbreaking for a lot of people, because not only is it like putting the people that they care about, their clients at stake, it's putting themselves at stake. They don't know what tomorrow looks like. They don't know if their resumes and their CVs will align with any other work, because this is all that we have done.

And so the opportunities are getting more and more limited, in their eyes. And so it's hard to show up every day complete. It's hard to show up every day 100% invested because you're unsure if today might be your last day. There's people that, organizations around us, that have completely closed down just recently and it's like, organizations that have been here for years are closing down like, because they just literally can't, we all rely on this funding.

We all rely on this commitment to HIV. And it becomes just scary for us. And we want to have the answers to our clients questions, but we don't even have the answers for ourselves. So it becomes a very uncomfortable environment for everybody really at play.

Stephanie: Yeah. And I just want to add to that, you know, this uncertainty right now is having a rippling effect that I don't think a lot of people outside of the sector realize, because like TJ said, there's organizations that are closing completely. Funding is getting slashed and MCC in particular is at different sites throughout LA County, but we all get our main funding from the same source.

So if MHF, MCC is getting impacted, you better believe that JWCH, APLA, everywhere else, it's also getting impacted to some degree or magnitude and that impact, people don't realize how it is impacting the patients because now they're calling us saying, “Why has this program stopped?,” that we would refer to. And obviously, we're not in the know about every single organization's funding and operation.

So we're like, “Cool, go to XYX clinic, they'll help you with this. And then they'll call us like, “Why did you send me there? They stopped the program,” or, I don't know, waiting lists for simple things. They're getting longer and longer and longer, and sometimes that's very discouraging. And that, that comes to the trust factor that the patients have with us as well, because it's like, “Well, you sent me here.” [David: Oh.] “You're supposed to know. And you know how dire my situation is. Why would you send me to a place that has a six-month waiting list?”

So it's, scary all all around but, you know, that's why it's important for, for organizations like this and places like this and people like all of us that work here to be advocates for those people that have had to fight for so long and just continue this fight.

David: What do you feel like, if it weren't for programs like the program here at Men's Health Foundation, what options would clients have? I mean, what, what's at risk for them?

Stephanie: Systematically, it's pretty hard to navigate. Getting these resources and a lot of places, you need a service provider like MCC or D2C or whatever kind of program to get that referral for you. Like a lot of like, legal references, we need to fill out the applications for the, for the patients. And they will tell us, “We've called ourselves, but we need our social worker to cosign this or we need our case managers referral.”

So a lot of access can be cut off because one, they might not even know they exist without programs like this or two, again, they need the “in” with the program like this.

TJ: America is one of the most complicated medical systems out of all, first world countries. And we have one of the most least effective also, so without programs like ours to help people coordinate and navigate these spaces, they, they truly don't know how, they truly are unsure of how this works and when we see, when we're linking people to care, of people who are newly diagnosed, they come to the clinic and they get rapid tests.

And, and at those point of care tests, their entire life is changed at that moment, they, the last thing they're thinking about is let me make sure I fill out that Medi-Cal application by the deadline, like they're not even– that is nowhere near where their scope is. And so having people like me and my team, and Stephanie and her team over there to take some of that stress off and to educate them and to empower them because our goal is for everybody to be self-sufficient.

Most of our, our scales that we use are aiming at getting them– how far away are you from being self-sufficient? Because if you are, you don't need us. And that's what we'd like to hear. [Stephanie: That's the goal.] That is the goal. But it's very unlikely that we meet people who are– come in right there and they have or working there. But when you educate them, once, once they do these things with us for a year or even six months, they’re like, “Okay, I don't need you to call me everyday. I get it now. I know what to do.”

Well, I know what's happening and if they don't know, they'll ask questions so they can know. And so empowering them to get that out point is kind of what we do but taking these programs away is just leading a lot of people at the bank, just leaving them at the wayside and not really knowing how to navigate. So if there are options for them, they have no idea how to access them.

David: When you talk to other people in your field, maybe people who've been doing this for a long time, I just think about, like, the history of the HIV epidemic, what, what perspectives do you hear or have you heard that, you know, is there anything that makes you feel that, that there's going to be this resilience with the work that you do, that you're going to be able to get through this chapter thinking about, you know, the challenges that have happened so far in the HIV epidemic and, and in the public health work to address that, is there something that you've heard or that you're hearing that, that does give you hope that, you know, we'll be able to get through this?

Stephanie: Yeah. I mean, it's again, about people. And like TJ said earlier, it's also about our job.

David: Yes, right.

Stephanie: It’s about my coin! So, you know, not only just thinking patient-centered, but thinking person-centered like these programs need to exist. And I have come from a clinic that has had limited to no resources and you have to make it work. And I'm not saying that's sustainable, but you have to learn and evolve and deal with what you got.

And that's where the advocacy comes in. That's where the social media posts comes in. And podcasts like this that are going to go and be broadcasted on YouTube for, a more wide scale. That's where the volunteering comes in. That's when you start listening to people with HIV and hearing their voice and hearing their struggles and their challenges and their triumphs.

Using programs like ours, seeing the benefit of these programs, because I don't want you to think, oh, I'm in bad shape, I'm in MCC again, the goal is for you to not be in MCC, and that journey throughout that process is, is a beautiful thing.

So we just need to stand up and say, okay, y'all don’t know what y'all talking about. We do. So we're going to keep going with our patients and serving them the best we can.

TJ: Yeah. I absolutely believe that regardless, there will be a strong fortitude and resiliency that exists amongst the communities because we've been through a lot.

Stephanie: And this isn't the first challenge.

TJ: This is not the first.

Stephanie: Not the first time.

TJ: This isn't the first time that, you know, some people in, in Congress or in the white House have been like, that's not important. They said that from the beginning, right? And then no one cared until Ryan White happened. And so places, like people like Marsha B Johnson and Sylvia Rivera and these people who were already overlooked and pretended that they don't exist, it is, we're just trying– they are trying their hardest to repeat that cycle.

But now we know better and now even when we did know better then, we feel a lot more empowered to be like no it doesn't have to be this way. So those fights that were happening we’re just almost fighting those same fires all over again, which feels really sad. But the reality is we did it and we can do it again.

And so coming into this, it's a very political space, but, I mean, a lot of minorities are kind of just like, you know what, “Hands off. When, when it's time to start getting crazy y'all let us know because we tried, we voted. We tried. And now you guys are seeing how this impacts everybody because it doesn't just impact minority populations it impacts everybody.”

So now everybody's like, “Oh God, this man is crazy.” Well, we kind of already were saying that. So now we already know what this looks like. So those people who were at those front lines, they're still here. They're still doing the same fight. So nothing was really changed because they knew how we were viewed by society to begin with.

So we have found a way to fight through that. Our communities, women, men, the queer communities, black communities, the Latinx communities, our trans brothers and sisters, and of course, our GNC community have all always been fighting. So it is nothing new for us. And they feel almost in power now because they know that there is a possibility for better.

So they don't want to stand down and just allow this to happen. We're gonna do whatever we have to do because we've always found a way to do what we have to do.

David: So well said. Is there, I just want to also ask for, you know, just that sense of, understanding the impact this is making. Is there a story that comes to your mind of a client that you've helped that, really demonstrates the kind of difference that this program makes? Is there like, a specific story that you'd be able to share here without, you know, revealing names or things like that?

Stephanie: Yeah, yeah. So I have a million stories, I think. And I've been doing MCC for 10 years, but I'll just say a general, not a patience specific, again, they, they are newly diagnosed. Sometimes it's a surprise. Sometimes it's like, well, it was a matter of time. But when they get the diagnosis and it sinks in, that's when the “Oh, my God” questions come.

To this day, we still get questions like, can I kiss my kids? Can I have kids? Can I share this mug with my partner? To this day, we're still getting those questions. So just seeing, you know, someone at the most raw and vulnerable moments and whatever they have going on in their life prior to that, because they are still a human being and have history and have relationships before this, how to navigate life through this lens now and people will say like, “Oh my God, my life is over, my life is over.”

I'm like, this might be a new book. Not necessarily a new chapter, a new book that you have to write, and you're going to write all the rest of these chapters and our purpose for these programs is empowerment and health. Period. Period. And just giving them that sense of self like, “Okay, yes, I have this diagnosis, but I am in control.” telling them, you know, off ramp that as soon as you get undetectable X, Y and Z happens because people are still like, “What does undetectable mean? I don't know what that means.”

And, you know, coordinating with different programs that we have at Men’s Health Foundation like PCC and talking about them getting on PrEP and saying like, this is not a death sentence. You're going to live a healthy life, probably even healthier than everybody else, because you got to come to the doctor and you're going to get those referrals and you're going to get all your needs met. And just seeing them from that very, very low spot to again, thriving. And that's, in MCC we call it “self-managed.” It’s really great. And we actually do have patients here that have screened “no need” for the program anymore. And they still call us like “Umm, am I still in the program?” We’re like, “No! You’re good! You’re good!” They’re like, “Well, what do I need to do to get back in?” [David: Oh no!] I’m like, “Well that’s not how it works!  It’s not how it works.”

But, you know, and that also is a testament to the staff and the relationships that they built with these patients because, like I said before, sometimes, Men’s Health Foundation is the only people that know about their diagnosis. And a lot of times, no shade, providers, but we know more than the providers because we have the psychosocial aspects that's going on that you might not necessarily say during your provider visit,

So MCC has a lot of relationship building. So throughout that process, just seeing them go from high acuity or even severe acuity to self-manage, is just beautiful.

David: That is beautiful. Yeah. I mean, I can only imagine just the kind of work that you do, just the impact it has on you. I wanted to ask you, you know, in this moment, what's top of mind for you? Like, how are you getting through, you know, this, this chapter in this year so far.

TJ: It's tough. It is really tough right now. like I said, I try not to read too much because I feel like I'm just, like, traumatizing myself. [David: Yeah.] But it's very difficult. It is a difficult space to be in, as someone who has dedicated my life essentially to this, some of my best friends are people whose lives have been impacted by HIV. And, it is my motivation to getting into this field. And it worries me that, you know, knowing that there's a new generation of people coming in that might not have that opportunity is scary to me.

And it's really scary because we are getting attacked at all angles, it goes beyond HIV, it goes into gender identity. And, our sexual orientation and being who we are and just seeing that our culture, our communities, our lives in every aspect, they are not just trying to get us only one way they are trying to get us in every way possible, and going from transgender or people of trans experience just out of our grant writing, out of our documents is heartwrenching for us, because it feels like I'm participating in an erasure of a culture, a genocide of a culture or a genocide of a people that I just don't– I either have to choose to not get a paycheck or do this.

And I think that's where a lot of my colleagues are with this, is that we have to decide, like our livelihood or the livelihood of others, and it feels like a choice that we have to make every day, and it hurts. And it's very difficult to do. And it takes you out of, you know, that headspace that you come into work every day in order to try to help.

And for me, it has been taking a lot of strength, a lot of, kind of a lot of blissful ignorance sometimes and it's just taking a lot of mental capacity to endure what we're enduring, to see other things happening and really hoping for a better day when things do look as bleak as they might.

David: Mm.

Stephanie: It's hard work. It's hard work for everybody on both of our teams. You know, again, because the stories we hear and the interventions that we have to implement, it's hard work and so this aspect of HIV care can have a lot of burnout, a lot of turnover, a lot of stress.

Combining everything else that has gone on and externally with the world but that shows you the, the fortitude of the people that do decide to stick this out and fight and engage and be an advocate for their patients because any one of us could dip out right now like, this is, this is too much. I don't know if I'm going to have a job tomorrow kind of rhetoric that is going on everywhere. [David: Mhm. TJ: Yeah.] But we all clock in the next day, we all show up. My team has their patient list. His team has their patient list that they have to go through. The work doesn't stop and we're not going to stop. So, just making sure that we have a seat at the table and shaking the table.

TJ: Yeah and our agencies are very important. To Stephanie's point, because we are the people that come into work here and places are, other competitors, but also our partners that are in the community doing this work. We are different people than the people that are clocking into the hospitals or private practices or into these spaces. We're not the same people.

We have a mission. We have a purpose. We have a goal that we're trying to achieve, not just getting a paycheck, right? Not just healing somebody’s physical body, but holistically their mind. Because people can have undetectable, they could be fine, but not be okay still. and so there's a huge part of that that we do. And so there is a need for specialty clinics like ourselves.

There’s a need for people who have this education. I don't just tell them the other day, I mean, me personally going into my, my own doctor.

And when I first moved there, having to explain to them what PrEP is. I'm like, I've been on this for years. You don't know what this is? Well, but they don't have a need to know because these people are not important. And this is how our, unfortunately, politicians, how our government, how our– some of the people making the decisions of our lives, look at us as this is unimportant and even to the degree that once they did look at it as I mean, as important, the Trump administration was the one who created EHE (Ending the HIV Epidemic) and so capacity right?

And so they did think it was important at a time. But then when we make progress, people think that the work has stopped. You know, we get so far in advancements. We have injectables now, we have undetectable, which equals, you know, untransmittable. So we have U=U, which is a thing. And then we have people living longer lives and they're like, “Oh, why are we putting so much money into this and people aren't dying anymore like they used to?” They’re not because of the money. [Stephanie: Because of these programs.] Like , they're not because of the work we’re doing. There’s still on the ground work to be done.

There are still people who come into our clinic, some we just came to our clinic recently who has known that they were positive, for over two years and have chosen not to take medication because they feel like if they take medication, it's going to make them have to accept what it is

As long as they don't take the medication, they don't feel sick. It's not real. And so there's still so much work to be done in the corners of the world, in the corners of our nation, that have typically been the corners that we want to push to the side that typically the corners that we want to gentrify and push the people out of, typically the corners of the places that we feel like they don't deserve to be on this, this land that we also stole.

Like there are places, like in our Latinx communities and our black communities and our queer communities that we have always, as a nation, historically wanted to not only get rid of or forget existed. And so in those spaces, it is important that people like us show up every day.

David: Well Stephanie and TJ, thank you both so much for being here today. Before we wrap up, I just want to ask any final thoughts on this conversation where we're at right now in the public health space nationwide? How that's impacting the MCC program at Men’s Health Foundation. What could you leave us with?

Stephanie: Yeah, just remember that public health is more than statistics, vaccines, pandemics that we're all very aware of. These are people that we’re working with, people that we are working for. So just remember that systematically, yes, changes happen, but we still have to be there for the people that need it. And we will be.

TJ: I think it's important to say that MCC is, is one of those problems that is directly affected by this. Like they are really, they are at the front of this conversation on cutting, on changing, on removing, [Stephanie: Reducing.] and reducing. And so like it is not, we're not just having this conversation because we can have this conversation, because the conversation is actually happening.

And this– we've always kind of not cared about care services or like behavioral health or mental health has not been important. But it is so important. These people work extremely hard and I appreciate, Dr. Mills and our whole C-suite team because they see the importance of this and they understand how important it is to have these, even though we may not have a huge client list like some other agencies.

But it's still important for us to have these care services. So the point they wanted to add more and build out because it is so important, and as an agency, we are honestly committed to doing our best to keep things going and doing our best to serve our clients. And we have such an amazing team, have an amazing leader.

They have some people who really feel care. But in this time, right now, it is important that we stay strong, that we support and uplift each other and give grace.

Sometimes it's you're going to come in at 20%. Some days you’re gonna come in at 80%. Some days you're going to want to scroll on LinkedIn. It's going to happen, right? But every day we come back and every day we show, we show up and we do give our all for whatever that day may look like.

David: Stephanie and TJ, thank you so much for the work that you do every day. Thank you for everything that you shared here in this conversation. And, you know, thanks for the, you know, the– I think it was an inspiring conversation that I do think gives hope to the resilience that it's going to continue, in the field that you work in and for the people that you help. So thank you

Stephanie:  Thanks for having us! It was fun.