Together we advocate, together we win

Mati Hlatshwayo Davis: [00:00:12] Hello, I'm Dr. Mati Hlatshwayo Davis. Welcome to Let's Talk ID. I am the director of health for the city of St. Louis. And I'm so proud to serve on the IDSA board as well. Joining me today for this discussion on advocacy in ID are some powerhouse leaders. First, from our amazing IDSA staff, Amanda Jezek and Andrea Weddle. Welcome.

Andrea Weddle: [00:00:40] Hi.

Amanda Jezek: [00:00:41] Thank you. We're excited to be here.

Mati Hlatshwayo Davis: [00:00:43] All right. And then I have two colleague friends. I have Dr. Kinna Thakarar and Dr. Rachel Bender Ignacio. How are we doing today?

Rachel Bender Ignacio: [00:00:53] Doing great. Thank you for having us, Mati.

Kinna Thakarar: [00:00:56] Yes, thank you.

Mati Hlatshwayo Davis: [00:00:57] I'm so excited. So, number one, women empowerment. Let's go. And some of my favorite leaders. And so this podcast was one of my favorites that I wanted to do for a long time now because as an especially as an IDSA board member, it has been so thrilling to watch how Amanda and Andrea have built the advocacy space on behalf of our discipline. When I was a baby, resident or fellow, maybe I didn't see it was happening, but I certainly didn't have an appreciation of how important our voice was. Amanda and Andrea, can you talk a little bit about what advocacy means to you and how you built this amazing momentum for us?

Amanda Jezek: [00:01:36] Sure. I'm happy to start. So policymakers and when we say that, we mean senators and representatives in Congress, as well as policymakers in the federal agencies and in the white House, they're making decisions every day that impact the field of infectious disease. Our members and the patients and communities that you all serve. And we need to make sure that when they're making their decisions, they are informed by the expertise that our members have and by your on the ground experiences. And we have been really thrilled to find so many IDSA members that want to get involved. And we try to make it as easy as possible for people to get involved. And one common refrain that I hear from IDSA members before they do their first congressional meeting is they'll say, I'm nervous. I've never done this before. I'm not sure. We prepare them, we go with them and they come out and they say, oh, that was really fun. That wasn't so hard. That's just been fantastic.

Mati Hlatshwayo Davis: [00:02:34] Oh my goodness. So you guys can't see the other two doctors who've done this in this space. But as Amanda was saying, that they were nodding their heads because that's literally everybody's experience is like, oh my, the nervousness. And then afterwards, people always text each other. I love when I see the posts of a first time person about how joyful and non difficult it is. So I love that you gave that perspective. Andrea, would you add anything?

Andrea Weddle: [00:02:55] I'll just add that our incredible member advocates have really helped to bring our advocacy program to what it is today. For HIVMA it started with actually by my predecessor, Christine Lubinski, who was a fierce and politically astute advocate and health policy expert, but who saw that really the HIV clinician voices were missing from key federal policy making tables, including the Ryan White program in particular. So we created a Ryan White coalition that is really led by our members with staff support and has really made a difference in the Ryan White and other health care policy making.

Mati Hlatshwayo Davis: [00:03:28] Thank you so much for that background. Kinna and Rachel, before you got involved, was this big on your radar? Do you kind of agree, like my experience may have been different, or were you even involved prior to getting involved in this specific space?

Kinna Thakarar: [00:03:43] Stepping back and, you know, thinking about advocacy, I feel like the reason I'm an infectious disease and addiction medicine doc and, you know, the reason I got involved was really just to, like, ensure that people's voices were being heard, especially, you know, folks are using drugs. And I personally started in baby steps, you know, on the state level. But I have learned so much from Andrea and Amanda and others on the call in terms of what advocacy is and how you can do it. And so whether it's responding to action alerts or doing meetings, you know, I was one of those people, as I was nodding my head earlier who was nervous to do that, but working closely with IDSA staff, this is something that all of us can do and really make a difference.

Rachel Bender Ignacio: [00:04:23] I share similar experiences to Kinna. I actually dove right in and joined the HIVMA board of directors. And to make it easy, my first term was during the pandemic and it just felt really empowering at a time when so many of us felt helpless to be able to send messages to the White House and Congress and help provide that guidance and try to advocate for the people that we see, many of whom are from marginalized populations, and help provide a little bit of scientific input into what was going on during a time in which many of us felt like we couldn't do all of that much. That really spurred my desire to do this and make this a permanent part of my job. You know, as an HIV clinician and a general ID clinician and researcher, we bear witness to marginalized people all of the time. We know that the experience of marginalized people brings them to infectious disease care because they are disproportionately impacted, whether it's immigrants and refugees, people who use drugs, people living with HIV. As I said, bearing witness to those people that were taking care of and then being able to share those things that they share with us, that they trust us with, and understanding that so much of what they share with us is their life circumstance and some of the challenges and barriers that they face that are medical and systemic, that I can't necessarily fix by being in front of them. But I feel like maybe I can do a little bit more of that part by then going to Washington or working on policy to try to work on the systems that are maintaining these difficulties, maintaining these barriers for our people.

Mati Hlatshwayo Davis: [00:06:00] I'm over here cheering in the background, because I don't know that another person could have put words that really articulate my experience. I get to teach a lot in my role and I talk about advocacy, and it's so interesting to me by how overwhelmed some of our trainees are by advocacy, and they don't feel empowered to get involved. It's important to me that we start to demystify this, and I believe IDSA has done an amazing job of bringing a very accessible pathway into advocacy. Number one. Number two, it's so central to our why as ID docs. Like I'm of course we're biased, but I just feel like that's so many of us bear witness. I loved when you said bear witness, Rachel. And in public health, in my job, that's the same thing. And the last thing I just love that you kind of gave a shout out to is my advocacy career took off in Covid as well, like I had just had a baby, didn't want to be on TV, but I used my platform on the news, right? CNN, BBC, Al Jazeera and watched my colleagues on Capitol Hill. And it gave me a little bit of hope and stability in a time where we didn't feel like we had it. So I just love everything that you said. Amanda and Andrea, can you take us into maybe a little bit more about how you've developed advocacy in IDSA? Because I think people get the emails a lot, but it would be helpful to even hear what you've developed and why.

Amanda Jezek: [00:07:19] We want to make sure that everyone in IDSA and HIVMA can participate in advocacy because there's power in numbers. We've accomplished a lot with the people who are involved. We can accomplish so much more if we get even more people engaged. We have something called the Member Advocacy Program. It's free to join. Very easy. You can sign up on our website. And through that, people will get monthly emails with information about advocacy, how our priorities are advancing in Congress and in the administration, as well as opportunities to get involved. And every time that someone takes part in advocacy, and that can be something as simple as completing one of our online action alerts, where you send an email to a member of Congress, it could be joining us for a virtual meeting with your congressional office, or coming to Washington, DC, or a whole host of other activities. Every time someone does one of those activities, they gain points in our system and they get to move up the ladder in the member advocacy program, going from ally to advocate and ultimately to champion.

Mati Hlatshwayo Davis: [00:08:23] And our strategy using that competitive edge the doctors have. You're like, you better get your points up if you want to move up. Kind of love that. I love that strategy.

Amanda Jezek: [00:08:32] And our champions will get various benefits. So for example, preferential selection for serving on IDSA committees and things like that that we know are really important to our members.

Mati Hlatshwayo Davis: [00:08:42] The thoughtfulness and that's why I wanted the leaders on our IDSA staff who are incredible. Coming off a board retreat, I just am always amazed by the amount of work that is done by a relatively small team. It's just important that people know how much thought that goes into it and how unique it is for other agencies. Andrea, what else do you think is important to say about how you've developed this advocacy and why it's structured this way.

Andrea Weddle: [00:09:06] For us to our advocacy agenda and our the policy issues that we take on is really driven by our members in that frontline perspective that you all provide. Really what we do is develop the tools and resources to make it easy for ID and HIV healthcare professionals to engage with policymakers, primarily at the federal level. But we are working on some tools that hopefully members can use at the state level because there's so much action at the state level these days. But our advocacy is not limited to Congress either. So we also provide opportunities to meet with and engage with federal agency leaders and partners. And there's one coming up soon that IDSA is hosting a meeting with Dr. Jeannie Marrazzo. And so there's other opportunities like that that are really important, again, to make that connection between what's happening on the ground and the policymaking that's happening here in the D.C. area, primarily.

Mati Hlatshwayo Davis: [00:09:55] And it matters. What I've seen as you've built that program is I've seen representatives from Congress tweeting, communicating. We've been able to put together very well thought out proposals, letters that have made a difference in real time. Like it's been really exciting to watch it grow and build momentum. Rachel and Kinna, can you talk a little bit about what you think as providers, as researchers, as leaders in your personal jurisdiction? The priorities currently are around advocacy or is that a misnomer? Like, is everything a priority at the same time? But what do you guys think the priorities are or should be right now?

Kinna Thakarar: [00:10:34] Well I know that IDSA certainly has outlined priorities to concentrate on because I think all of us would love to advocate for everything. Right. But a couple of those are strengthening the ID/HIV workforce, right, with the Bio Preparedness Workforce Pilot Program, which is authorized, and we just need funding so we can keep advocating for that also. Antimicrobial resistance, AMR right, with the Pasteur Act and trying to ask for increased funding for CDC and other ID priorities. More public health funding.

Mati Hlatshwayo Davis: [00:11:01] Like, I didn't even pay her to say this as a board member. [laughs] It's like I came to them first. I didn't even make Amanda and Andrea said, and when you hit them, I'm like, this is this is already one of my favorite podcasts. That's incredible. And I think, again, that's important. It shows that what Amanda and Andrea have built is working because when we, the consumers in IDSA, can actually match what they want us to say, then we're doing something right. You know what I'm saying, Rachel? What do you think?

Rachel Bender Ignacio: [00:11:28] You know, I tend to tailor the message a little bit differently depending on who I'm speaking with. Coming from Washington state, we have urban areas. We have very rural areas. We have many counties that don't have an ID professional that are really underserved in terms of access to antimicrobial stewardship. You know that message when we go and speak to the Congress people who represent those rural districts, they're not thinking about these things. But when you speak to them about issues that matter to rural Americans, which is so much of the United States, they really key in on this and understand how both pandemic preparedness, antimicrobial resistance, runoff from agriculture and the one health idea and introduced these topics to them. It really, really speaks to them in a way that cuts across political lines, and it's really powerful to see that. So yeah, we do tailor the message in what we're working for in each of these areas a little bit differently. But there is something that is of importance, I think, to to everyone out there.

Mati Hlatshwayo Davis: [00:12:32] Gosh, it's such great points. And I think that's the reason why, for me, prioritizing this podcast was important because no matter how many volunteers we have, when we have a diversity of voices, a diversity of backgrounds, a diversity of the types of work we do, we are able to tailor that message, even though effectively and Amanda and Andrea are but two people. They can't be in 50 states. They can't be in hundreds of cities past that, they can't be a Congress at the same time. So what we've been able to do is build them like a team of advocacy warriors, for lack of a better term, to really be able to to continue that message. Amanda and Andrea, the smiles on your faces. You must be like proud mamas of how the docs that you've brought in are just so on message. And I say this because we're coming off a board retreat where we've been reflecting on our strategic priorities, and I'm so excited for you guys to hear later this year where we're going. Anything to add about those priorities? Did we get it right or are you mad at us? Did we get it wrong? And now we've got to do a new podcast?

Amanda Jezek: [00:13:30] You got it totally right, which does not surprise me at all. There's a common thread through all of these, which is the priority of health equity because, as Rachel said earlier, these infectious diseases disproportionately impact marginalized populations. And so that is something that is really woven into everything we do at IDSA.

Rachel Bender Ignacio: [00:13:50] Can we add video feed to this podcast to show Dr. Mati dancing in her chair right there?

Mati Hlatshwayo Davis: [00:13:56] Can we? I literally just did a twirl with my hands up in the air, because you guys don't know how hard it is to sometimes be the only black woman or minoritized person. And then to come on a podcast where someone else champions something that is both personal and professional. It means I'm with my people. It means, oh my God, I'm so happy. And unfortunately, there are some podcast people who have heard me say, you know, theirs was my favorite podcast. It's changed guys. Nobody made me twirl in my feet with Disney princess hands out in the air, ever during a podcast. Andrea, how do you feel like these priorities are and coming from the board retreat for where you know, we're going?

Andrea Weddle: [00:14:37] I'll just add too and especially around the health equity front for HIVMA really taking on where we see gaps, significant gaps in implementing the remarkable tools that have been developed for HIV, in particular for prevention. So one of our big advocacy priorities right now is around advancing funding for our national program. And so that's at the, you know, one thing we're doing a lot of work on, and our members have been that have been engaged with us, have really helped make that happen. We have some seed funding for that and so we will continue that as well.

Mati Hlatshwayo Davis: [00:15:07] I love it. So I'd like to move to something that I would love to hear from every one of you about, which is how folks can get involved. So I think the nuts and bolts of the house, obviously, Amanda and Andrea can speak to. I had a very long standing IDSA member asked me when is the right time to get involved? Because she felt like it was at a certain time of year. So there's still there are people who are interested in and who may have misinformation or disinformation about the whens and the hows, but from for Kinna and Rachel, you know, I said, how can folks get involved? I'd love you guys to kind of bring us home with some stories, personal stories about your personal experience since you've been involved. Um, that can also maybe spur people's resolves, especially our introverted members like me. We know it's hard for me to come out of my shell for people like me who are introverts, why it's still important to get involved and what some of your favorite parts. So let's start with the nuts and bolts and bring it in with the great stories from our docs. Amanda or Andrea, who wants to kick it off with the how can folks get involved?

Amanda Jezek: [00:16:09] Join the Member Advocacy program or the MAP for short, and we'll get that link out to everybody. That is really the easiest way. And that through that, you get all kinds of opportunities for different things that you can opt into. And there are things you can do online virtually, things you can do in your community. Because every representative and senator has offices in their own states and districts, you can meet them there. And of course, you can come out to Washington, DC and join us for meetings, and we'll support you every step of the way and the best time to get involved is now, always and forever.

Mati Hlatshwayo Davis: [00:16:43] There is no date, rolling basis, night or day after you've put down the kids. When you wake up and you haven't been bombarded, at work, on a work break, on the weekends, at a bar, during drinks, sign up. It's easy online. Andrea, anything else about how folks can get involved?

Andrea Weddle: [00:17:01] Yeah and I will also put in another plug for the Ryan White Medical Providers Coalition group. So after you join the map, if you work in a Ryan White funded clinic, please sign up for the coalition as well. We offer sort of tailored advocacy actions, as well as at least twice a year, special forums around Ryan White, issues and opportunities to meet with federal officials and also hone your advocacy skills. 

Mati Hlatshwayo Davis: [00:17:23] Alright, Kinna and Rachel, yours is kind of a how but more of a why and maybe some stories that you think could hit home for folks who may still be tentative or don't think they have time, or don't think they have something to offer.

Rachel Bender Ignacio: [00:17:36] My impression was that people had to be fancy. They had to be known in ID or have some special skill set. I actually think that it's the people on the ground, and especially our early career folks, that are so passionate, that belong in these advocacy spaces. And Kinna and I have added to our advocacy agenda to really try to bring in our members in training. I think it's so powerful, especially those of us who enter ID to help focus on marginalized populations, to bring that passion and bring that voice and really feel like you can do something. And there's no person that is too early or too junior to do this. And that has been one of the joys, is seeing engagement from people who are maybe even just starting in their career, or who've been in it for a few years and are already starting to develop these vignettes of how the system isn't working for our providers, for the patients who are facing professional challenges. For those of you who are listening, who are medical students, who are residents, who are fellows, who this is your first year as an HIV primary care person, join us.

Kinna Thakarar: [00:18:54] I totally agree, and fellows and trainees can really play a crucial role in advocating for the future of ID. And for me personally, I started off small and, you know, was really motivated by some things we were seeing on the local level. And just recognizing even something like a 30 minute zoom meeting can have a huge impact. Amanda had sort of held my hand through a virtually through a meeting with our senator, and she ended up co-sponsoring the bio preparedness workforce pilot program, and that really showed me that we can have an impact collectively and really inspire me to to stay involved with IDSA and, and try to move the needle towards health equity and more policies.

Mati Hlatshwayo Davis: [00:19:32] This has been such an amazing podcast. I'm even inspired to do more. And as someone who sits on the board and has access to all these incredible humans, I got some ideas on ways that I can expand and use my platforms. This has been incredible. I want to give each one of you an opportunity to have a closing thought or something you may not have had a chance to say before we go and mobilize and advocate, especially in this pivotal year that's going to impact us for the next four years. God help us all. Amanda, I'll come to you first. Anything that you want to say in closing?

Amanda Jezek: [00:20:05] One reason people may not get involved in advocacy is because they think I'm just one person. I can't make a difference. And so I'm so glad that Kinna shared her experience because she made a huge difference, and we have seen that time and time again. Most recently, just this week, CMS put forward a new proposed add on code just for ID that's going to boost ID reimbursement. 

Mati Hlatshwayo Davis: [00:20:30] Wow.

Amanda Jezek: [00:20:30] And this would not have been possible if it was not for our members banding together and using each of their incredibly strong individual voices. If we've done that with the members already involved, think of the difference we can make if more people get involved.

Mati Hlatshwayo Davis: [00:20:46] Obsessed. Thank you to everyone involved and love seeing a giggly, happy, clapping Amanda. Again, we may have to make this a visual podcast because I can't even. Andrea. Any closing thoughts? 

Andrea Weddle: [00:20:58] Yeah I'll use my minute to give a shout out to the volunteers that have already engaged with us and really made important policy achievements happen for us. That's really what fuels our program and drives Amanda and I and our teams to really do our best at creating resources that make it easy for you. So if you haven't tried, please, please join us. It's a lot of fun.

Mati Hlatshwayo Davis: [00:21:18] Love it! Kinna, what are you thinking?

Kinna Thakarar: [00:21:20] I am thinking just join the member advocacy program. Connect with us. Email us if you have questions, ideas and thanks for doing this podcast.

Mati Hlatshwayo Davis: [00:21:28] Yes, Rachel girl, bring us home.

Rachel Bender Ignacio: [00:21:32] I wanted to second everything that you've said, Mati, about how easy it is to do this and how our fearless staff leaders, Amanda and Andrea and many others who are not with us today, really shepherd us through every step of this. What you as a member need to bring is really just your experience and the vignettes of taking care of people, understanding the geography of where you work, and the limitations of the health care services that you're trying to provide, and just telling those stories to people who may not be attuned to these problems. That's really all you need to bring, because I have been met with such amazing support and guidance by the staff at every step of the way, that it's really made this job easy and a joy. And I can't thank our staff enough for being just so fantastic. And I couldn't recommend this experience more to our IDSA and HIVMA colleagues.

Mati Hlatshwayo Davis: [00:22:28] Well, there you have it, folks. You cannot manufacture or fake this level of passion and joy and dedication for those of us who sometimes feel like, you know, I've always said I will never use the term thankless work, I find it disrespectful. But if anything around that sentiment even hits home for you. Being in advocacy with colleagues that are, you know, that walk along beside you from a distance, even sometimes is so rewarding. Things I heard today is when is the time to sign up? Now. Do you think that it's going to be this cumbersome process? No, because the IDSA staff team are awesome. I would tell you that working with them makes me feel guilty, because it's kind of like having concierge service. Like they give you everything, they support you so much. So if you think capacity is an issue, it is not. Just try it. And my last call, my final thought is to those of you who are senior in your career and who have mentees, I'm really sending out a challenge that you take this podcast. You make sure they listen to it or you give them some messages. We all know that workforce. We all talk about the IDSA match. There is an opportunity here to engage with medical students, residents, fellows, junior faculty members who can really expand our reach in something that we are doing so well. We kick ass at advocacy, and ID is now has a presence as a leader in this space. I just want to thank you all so much for like I said, I twirled in a chair and that's all I'm going to say about that. One of the best podcasts ever. Can't wait for this to drop. As the youth say, I sound like such an auntie. See you all soon. Thanks, guys.