Volledige transcriptie van Dan Ignaszewski - Executive Director, National Alliance for Eye and Vision Research

you know, those kinds of things were advanced by vision researchers, and I think that the success and the outsized weight that vision research has contributed to medical science has been very impressive to [00:05:00] me. [00:05:00] Zach Gobst: Yeah. Super exciting. And I think there's kind of some parallels into like, you know, I work in patient recruitment because you can kind of like start with how do you drive cutting-edge research in a way that drives systemic impact, and it sounds like you've found your way there. [00:05:13] Zach Gobst: On the advocacy side, dealing with different kind of behavioral challenges. When it comes to what I think is fascinating and very different from my work, when you get into kind of like shaping policy and kind of understanding how to enable space for organizations, what are the things that have been most interesting to you? [00:05:31] Zach Gobst: I, I know you said you studied policy going in, but like from there to the reality of it, curious, you know, what's been interesting about it for you. [00:05:38] Dan Ignaszewski: You know, there's a lot of political divide, I think, in this country, right? And I think that one thing that I will say generally, right, is that regardless of political party, political affiliation, there does seem to be an emphasis and a focus on wanting to make sure that people have access to healthcare, wanting to make sure that people have new and innovative treatments. [00:05:56] Dan Ignaszewski: The NIH and the National Eye Institute broadly has had [00:06:00] bipartisan support for decades, and I think that it helps sort of bridge that gap from what you see on the news every day to what you actually see in practice in policy. And sure, there's issues and concerns and there are, you know, new attacks and challenges that the NIH is facing from a policy standpoint. [00:06:16] Dan Ignaszewski: But even so, we're still seeing strong bipartisan support. And I think that that's something that I've always appreciated about the research space and the healthcare policy space generally, is that everybody's got different approaches. But I think that ultimately, you know, there, there is a focus on, on an understanding of why research is necessary, why we wanna continue to lead the world in medical research, why we wanna continue to lead the world in new treatments and things like that. [00:06:40] Dan Ignaszewski: I think that's important. [00:06:42] Zach Gobst: Yeah. That's refreshing to hear. Not that there's not really hard work to be done, but that there's more than what we see in the news going on in terms of how people, you know, see these issues is not something you always get exposure to, so that's, that's fantastic. In terms of, like, the purpose in your work, you know, curious if you've had any kind of [00:07:00] moments that over 20 years you've probably dealt with a number of shenanigans or things that, you know, aren't, aren't as easy as you'd like them to be, but you've stayed with it. [00:07:09] Zach Gobst: You've continued to work in this space. And, and curious kind of if there have been any inflection points or things that have helped you kind of lean more toward the work that you're doing over time. [00:07:19] Dan Ignaszewski: Yeah. A couple points I would say over, over my career. I've been very fortunate where the thing that's kind of exciting and, and interesting about policy and, and that, that really I think keeps people that are in the patient advocacy and community advocacy spaces, that keeps I think everybody going, is each win that you have builds on each other and has the potential to impact not just one person, but a lot of people, because it's a policy-wide issue, so it's something that has the potential to impact a lot of people. [00:07:45] Dan Ignaszewski: And, and I've had the fortunate opportunity to be able to help pass state laws that have, you know, helped improve and, and require access to prosthetic devices through state insurance plans, and being able to see people who used to not be able to get prosthetic devices through their [00:08:00] insurance plans be able to get those. [00:08:01] Dan Ignaszewski: I've seen, you know, increased focus and funding for research that can help improve access to new and innovative treatments that are... or, or new and innovative devices that have actually then come out into the product field with, with these new devices and with these new treatments. And kind of seeing those things be realized because policy helped encourage them and helped support them. [00:08:23] Dan Ignaszewski: Those things have been really, really impactful. Seeing people that you know, you know, and a- and when you get to know people in the patient advocacy space, you truly, you know, become friends with people. And, and I think that seeing the impact that policy has had on them once you have some of those wins just continues to drive it forward, and, and this year, you know, it's, it's... [00:08:41] Dan Ignaszewski: The year's not over yet. We're, we're still dealing with a lot of challenges at the federal level, but, you know, right now we do have some strong bipartisan support for the NIH and an independent National Eye Institute right now, and so I think that there's a lot of continued hope and opportunity to see that progress and just continue to be excited by it when, when we have those opportunities. [00:08:59] Zach Gobst: That's awesome that [00:09:00] you're a part of kind of making such large impactful changes to people's access to care, and that that's a you know, a role that you can have, and, and like you said, build wins. That's incredible. In terms of, you know, the initiatives that you have going on right now And what impact is next for you. [00:09:19] Zach Gobst: Curious if you can kind of shed light on, you know, where you're heading and kind of what's important for you where you are right now. [00:09:24] Dan Ignaszewski: Yeah, absolutely. The, you

know, the, the organization, it, it's been a, a really challenging and busy year this year. You know, there's, there've been a lot of changes at the federal level, especially as it relates to focus on research and access and, you know, agency changes and things like that that have occurred this year. [00:09:40] Dan Ignaszewski: You know, I think that, that we've continued to carry forward and, and push the initiatives forward, and thankful for all of our partners, frankly, to help support, uh, some of the things that we've done. But one of the big things that we launched a little bit earlier this year was our See What Matters campaign. [00:09:54] Dan Ignaszewski: #seewhatmatters. You can go to seewhatmatters.org. And basically that campaign [00:10:00] really was brought about because there's an interest in consolidating and a discussion about consolidating these institutes at NIH, in- including merging the National Eye Institute with neuroscience and brain research. And while we're all looking for and, and support efficiencies at the federal level, uh, with our government, that's one area where we believe that we would actually lose efficiencies because-- and we would lose some transparency in, in how people would fund research, and whether the research would go to neuroscience or brain or dental and cranial research or vision if you had a consolidation of those three main categories. [00:10:32] Dan Ignaszewski: And so the See What Matters campaign was really brought about to help raise awareness about why vision matters, why vision is important. You know, when you look at the N- the NIH, a lot of funding supports neuroscience, Alzheimer's, ALS, cancer, all of those kinds of things, right, that, that are neuroscience, cancers, heart disease, the big scary diseases, if you will. [00:10:52] Dan Ignaszewski: And, you know, the truth of the matter is that people want funding for those because those diseases are scary, and people think about whether or not they're gonna [00:11:00] come down with those kinds of conditions and, and-- or if their family is, and what that's gonna mean for them. And See What Matters was really evolved and developed because a lot of people realize when they're asked about it that vision is important, and they're-- it's, it would be very scary and very concerning to lose their vision and how that would impact their life. [00:11:17] Dan Ignaszewski: In fact, we have studies that show that most people would rate losing vision as one of the most concerning outcomes as far as an impact to their daily life, and yet we don't talk about it, and we don't think about vision loss or vision impairment until it already starts to happen. And so See What Matters was sort of a campaign that we developed with our partners and, and with support from Research For Blindness to really help encourage people to, to see that vision matters to them, that vision is important, and ultimately that we need the research to support advancements in vision, that we need access to new and innovative treatments, we need coverage for vision, and that patients really need to be a part of the conversation when it comes to m- medical research, access, provider support, things [00:12:00] like that, to really bring sort of the, the whole vision community along with the discussion. [00:12:05] Dan Ignaszewski: So, so See What Matters is kind of our big campaign. We launched that earlier this year, and have gotten some pretty good networks out of it and, and, and follow-up out of it. But we, you know, we're continuing to kind of press that message of why vision matters to people. [00:12:17] Zach Gobst: Yeah. What, what's so fascinating is I think the challenges you're dealing with are also reflected in kind of the work that I'm often seeing in clinical research, where there's often stakeholders that have competing initiatives. [00:12:27] Zach Gobst: You know, when we're working with, like, a pharma sponsor, they might have different therapeutic areas that they're working on, and, like, how do they kind of share costs and do things efficiently? But then there's also, you know, you don't wanna lose the depth of understanding of what's going on with one of your programs and the impact that can be had And, you know, getting patients involved and kind of sharing what's going on is not always trivial. [00:12:51] Zach Gobst: You know, people's relationship to health care and, you know, people being concerned about how sharing might have downstream consequences for them [00:13:00] perhaps, or there's just social pressure that th- there's not really a space for them to feel as comfortable as, as ideal. Uh, these are all things that we're dealing with too, that you're kind of dealing with at a, such a broad level and, you know, kind of helping, you know, our, our country and our, our largest institutions really appreciate what's going on at the patient level and how they prioritize things. [00:13:19] Zach Gobst: It's fascinating how it's, it's, it's similar work in many ways. Uh- Yeah. True. That's really true. I think that [00:13:26] Dan Ignaszewski: the work that's being done in the clinical trials space, you, you know... The thing is, is, uh, whether it's advocacy, patient access, patient involvement, I think all of it comes to a point where patients have an opportunity to kind of tell their story and, and be part of their own story in some ways, and it's kind of exciting when people get an opportunity to be involved in clinical research or in advocacy. [00:13:46] Dan Ignaszewski: It's their chance to have that story heard and really expand on their story, which is exciting. [00:13:51] Zach Gobst: Yeah. And, you know, curious in terms of what helps make your work most effective. You've been doing this a while. You know, when, when does it [00:14:00] feel like, you know, the stars are really aligned for your work? You know, what, what does that look like? [00:14:03] Zach Gobst: What are the

experiences you've had with that? [00:14:05] Dan Ignaszewski: That's kind of the crux of it. You know, how, what, how does advocacy come to life, and how does, how is it most successful? It's, it's something that we've challenged ourselves with every year, every day to kind of identify how that works. But the truth is, is, you know, we're based in the DC area, and we are, as an organization, our driving purpose and focus is on advocacy, and so we are, we're up on the Hill at, you know, frequently talking with members of Congress and their staff about why vision matters, why vision research matters, sharing the, the See What Matters campaign with them. [00:14:33] Dan Ignaszewski: But what I've found over the years is, you know, we can't do it alone as an organization. The truth is we need partners. We need everybody kind of coming together, sharing the same message. And I think that where you see the wins happen, all of those things that, that when partners come together, when different constituencies come together and they support a similar message, I think that's when it really highlights for members of Congress why it's important. [00:14:55] Dan Ignaszewski: And the thing that's kind of unique about the vision space and vision research space specifically is, [00:15:00] uh, you know, we have an opportunity to, to get, you know, industry involved because research at the NIH ultimately funds and supports pipeline development for new and innovative treatments that could come out in the future, right? [00:15:12] Dan Ignaszewski: It supports clinical trials. It supports translational science. So I think that, that there's the research community, there's the industry community, there's the provider community, 'cause they want advancements in how they treat and care for their patients. And then there's obviously, uh, you know, the core of, of why the research exists, why the clinical care exists, why the industry exists, ultimately patients. [00:15:32] Dan Ignaszewski: You know, having that patient message and, and patients telling Congress and telling people why, why research matters, why access matters. And I think that when we can kind of align all of those voices, you've got patients and caregivers and families, you've got industry, you've got providers, you've got the research community. [00:15:50] Dan Ignaszewski: When we can bring everybody together with shared messaging and p- be consistent that way around why it's important, that tends to be the most effective time that Congress will listen. And, [00:16:00] and thankfully, you know, we-- again, we can't do it without our partners and, and all of our stakeholders. And so we've been thankful for the, the support that everybody has provided this year especially. [00:16:08] Zach Gobst: Who's mentored you in this space? Like, how'd you get to this? Like, I- I'm curious about, like, in your kind of 20 years here, like, who are the people that have helped direct you into, you know, making this type of impact? [00:16:18] Dan Ignaszewski: I've been very fortunate in my career and, and I sort of sought out mentors and also had a few folks that sort of offered to take me under their wing, I think, at times, and that's been, uh, a really exciting opportunity. [00:16:29] Dan Ignaszewski: You know, i- in, in my first real job out of college, I was in public policy and, and again, spent about 13 and a half years with an organization. And we had a relatively new CEO that came on, and I'll never forget, I ended up having dinner with her one night and she asked me, "So what do you think of the organization? [00:16:44] Dan Ignaszewski: Where do you see yourself in five years?" And I figured I got nothing to lose. I might as well tell her, "I think it's a steppingstone job. I think the organization could be bigger, needs to be bigger, but isn't big enough." And, uh, to her credit, you know, we had a really long conversation that night about things that-- where, where [00:17:00] opportunities were and things that way. [00:17:01] Dan Ignaszewski: And, and I think that, you know, she saw some opportunity in, in how I was looking at the organization, the impact that we could have, and she kind of took me under her wing to be able to Say, "Okay, you know, let, let's give th- let's give this kid a shot and, and see what he can do." So I think that, you know, I, I, I've been fortunate. [00:17:18] Dan Ignaszewski: I've had a, a few different CEOs like that, uh, at organizations that have helped kinda guide me from a, a policy perspective, from a business perspective, a- and just from a personal perspective, sort of how do you, how do you navigate the world? How do you navigate patient advocacy? How do you navigate nonprofit and association management? [00:17:36] Dan Ignaszewski: I did not think originally that I was gonna have a career in nonprofit association management, but, uh, it is something that has... I, I, I've loved having the impact that I've had and, and being involved in that and seeing the results of that. So thanks to those mentors, I kinda was able to develop a career in it And then some, some board members, both past board members and current board members. [00:17:56] Dan Ignaszewski: My previous organization, my current organizations. You know, when I first came over to [00:18:00] the vision space, our president of our board was absolutely phenomenal in sort of helping us, helping me sort of navigate the transition and, and, uh, get to know people and, and network with the, the right people in the community so I could really, you know, be set up for success and set the organization up for success. [00:18:15] Dan Ignaszewski: And so it's been great to kinda have those opportunities, and I think that, that what I would say from a mentorship perspective is if anybody's out there looking for a mentor or wanting a mentor, you know, seek them out, ask the questions, you know, ask for advice. You, you'll be surprised how far you can

get. [00:18:30] Dan Ignaszewski: And one thing in the-- what I'll say, especially in the vision space, both from a research standpoint, a clinical care standpoint, and an organizational standpoint, you know, the number of mentors that are in the space have been phenomenal. You know, everybody's willing to help each other out, and that makes a big difference for everybody. [00:18:45] Dan Ignaszewski: And, uh, rising tide raises all ships. Uh, I think you kinda see that in, in this space really well. [00:18:50] Zach Gobst: That's great. That stepping stone comment stuck with me. I don't think I've been as patient with people when that comes up, so your CEO saw the opportunity with you [00:19:00] instead of the, you know, opportunity to respond to that I think is special. [00:19:04] Zach Gobst: And then you mentioned, like, getting advice. You know, curious about any advice that's kinda stuck with you or is there anything you'd say is the best piece of advice you've had in your career? What comes to mind? [00:19:13] Dan Ignaszewski: Yeah, I think being persistent, that's one of the big ones. And I think that realizing when you're in the room with people, you know, there's a reason that you're in the room. [00:19:22] Dan Ignaszewski: And i- I think it's important for people to understand that when you're, you're in the room with decision-makers, you're in the room with other people, there's an opportunity for you to, to leave a lasting impact and kind of leave your mark that way. And, and you were either brought into that room, invited into that room because of your knowledge, because of your skill set. [00:19:39] Dan Ignaszewski: And I think that one of the things that I would say, uh, that I got advice that way was, you know, just be confident, be comfortable in yourself and, and with what you know. And I remember one time, uh, I, I turned 30 years old, and I, I think I said to somebody at one point, I said, "Oh, well, well, now because I'm 30, now I'll be taken seriously," kind of thing, you know? [00:19:58] Dan Ignaszewski: And I think I, I had somebody come to [00:20:00] me and say, and say to me, "Well, you've been in the decision-making rooms for years, you know? Why do you think suddenly at 30 it's gonna change?" And I was like, "Oh yeah, you're, you're kinda right about that." And so I, I think it's realizing that and, and really capitalizing on that and just saying, you know, it-- being comfortable with where you are and finding ways to kinda be in those rooms where you can help have an impact. [00:20:20] Dan Ignaszewski: I think that's really important. [00:20:22] Zach Gobst: Great. Anything else we should talk about before we wrap up? That was great conversation. Anything come to mind? [00:20:26] Dan Ignaszewski: Yeah. I think this was great. I, I appreciate the opportunity. I think the exciting thing about what you all do with the clinical trials and, and with patients and everything, I think that there's a lot of alignment that way, right? [00:20:36] Dan Ignaszewski: I think there's a lot of opportunity for patients to understand how they can get involved in, in the health care sphere, the research sphere, the, you know, the, the pipeline development, all of these kinds of things. You know, a- and ultimately, I, I think that, that it's important to know that, you know, without research, we don't have advancements, right? [00:20:54] Dan Ignaszewski: And I think that, you know, we've seen Congress take some actions that are gonna continue to support the NIH, uh, [00:21:00] with its existing structure this year, so that was a, a big win. But, you know, we, we continue to still need a voice. You know, one of the things that we're hearing is that next year, even, even if we... [00:21:08] Dan Ignaszewski: It looks, it looks like we're gonna stop every, all the concerns with the cuts and things like that that were proposed earlier this year to NIH and research funding broadly, but it sounds like some of those things may be on the chopping block again next year. And so, y- you know, I think that one of the things that I would urge everybody to be involved in and be aware of is sort of just like when you're looking for clinical trials and you're looking for, for how you can get involved and navigate that sphere, you know, I think from an advocacy perspective, we all have to stay vi- vigilant, just kind of stay on top of things, see what's going on, know what's happening, and help carry that message forward with the See What Matters campaign. [00:21:42] Dan Ignaszewski: You know, why does vision matter to people? Why is it important? And, and that sort of lets everybody tell their story. And so encourage everybody to remain vigilant, uh, remain part of the conversation, and, uh, I think that'll, uh, will benefit sort of the, the research community, the patient community, and everything that way. [00:21:58] Zach Gobst: Amazing. R- really [00:22:00] grateful for all your work, for you to come in here to share the part that, you know, I see and I play benefits greatly from what you're doing to make sure that systemically there's a patient voice heard in research at every level. Loved having you on. Uh, would love to stay in touch and maybe do this again in a, in a year or two. [00:22:17] Dan Ignaszewski: Yeah, that'd be great. Appreciate the opportunity. [00:22:19] Zach Gobst: Thanks, man. That's a wrap on this episode of Leap Together. A heartfelt thank you to Dan Ignaszewski for sharing his impactful journey woven together by true patient advocacy. From studying healthcare policy to his time democratizing access to medical devices and treatment with the Amputee Coalition, to where he is now, championing vision research on Capitol Hill. One clear takeaway from this episode is Dan's belief that when patients, providers, researchers, and industry all speak with one voice, Congress listens. If today's conversation sparked something in you, be sure to subscribe, [00:23:00] share, and connect with us for future episodes. Until next time, stay informed, stay engaged, and keep pushing for better health outcomes for all