The Future is Now! Changing Health Outcomes for Psoriasis and Psoriatic Arthritis

Psound Bytes Transcript: Episode 200

Release date: Tuesday, August 1, 2023

“Welcome to this episode of Psound Bytes, a podcast series produced by the National Psoriasis Foundation, the nation’s leading organization for individuals living with psoriasis and psoriatic arthritis. In each episode someone who lives with psoriatic disease, a loved one or an expert will share insights with you on living well. If you like what you hear today, please subscribe to our podcast and join us every month at Psound Bytes for more insights on understanding, managing, and thriving with psoriasis and psoriatic arthritis.”

Matt: My name is Matt Werbach and I'll be your guest host for this special episode of Psound Bytes. I am the Associate Director of Media and Communications here at NPF and in my 3 1/2 years here I've seen a lot of growth in the programs at NPF, including Psound Bytes, our podcast. Today we are celebrating the 200th episode of Psound Bytes with highlights about NPF funded research and what we are doing to drive efforts toward a cure for all, while improving the lives of those who live with psoriatic disease. Joining me are President and CEO Leah Howard and Chief Scientific and Medical Officer Guy Eakin. Leah joined the National Psoriasis Foundation in 2012 as the Director of Government Relations, bringing years of experience working in the National Health and Disability organizations and with local governments leading health care and research institutions. In 2014, she was promoted to Vice President of Advocacy and Government Relations and organized NPF’s landmark patient focused drug development meeting with the US Food and Drug Administration (that's the FDA). And in 2017, Leah became the Chief Operating Officer. Followed not too long after, in January 2022, she became the President and CEO of the NPF. Guy’s role with NPF is the Chief Scientific and Medical Officer. He provides the vision, leadership and management of NPF's research activities and medical programs, along with leading the way in building collaborations and connections to further enhance and achieve our goals in research as set by NPF’s strategic plan. Welcome Leah and Guy. It's an honor having you here today.

Leah: Thanks so much for having us.

Guy: Absolutely, it's great to be here.

Matt: Leah, NPF is always changing and listening to our community and assessing what we need to do to meet the needs of people with psoriasis and psoriatic arthritis. What are some of the biggest highlights that you've seen in the time that you've been with NPF?

Leah: Oh my goodness. It's so hard because there have been so many. I think in the 11 years that I've been at the Foundation, I've really had the privilege to interact with the community in so many different ways. But just to summarize quickly, a few of the highlights. I would say one was in 2016 when a group of us went to the Food and Drug Administration to share the symptoms and challenges that this community experiences by living with psoriatic disease with the FDA. Not a lot of communities have the opportunity to stand before the FDA and really tell the federal government what it is that a community needs to better manage their disease and so that was a really powerful day long conversation. We've also had great congressional briefings, really powerful community conferences, and super fun events like our galas and our Take Action events. But I think those times where our community gets to tell their stories and share their experiences are the ones that are really standing out for me.

Matt: Great. Thank you for sharing and Guy, welcome aboard.

Guy: Well, Thank you!

Matt: You are relatively new with the National Psoriasis Foundation. I'd love for you to share a little bit about your background and what led you to NPF. And then maybe a little bit of how you feel you can impact NPF.

Guy: What led me to the NPF? I've certainly been aware of the NPF for many years, but I have to say that my colleague and now my boss Leah, is actually probably who led me most to the NPF. What excited me about the NPF is completely different. I've had a background for the last almost 20 years now in managing scientific strategy for neurosciences and immune mediated conditions and I’ve managed portfolios of more than $100 million dollars now in research funding. So I feel like I’m in a pretty safe place to say that many organizations will say and broadcast that they're focused on patients and that they understand what their patient community is saying. But as I've come to understand the NPF more and more, what I'm so amazed by is the depth of resources that NPF is committed to that seemingly simple task of not only tracking the stories and anecdotes of the patients, but really getting into the data that informs the big decisions that we make in all arenas, so not just research or the medicine side what I oversee, but also things like our advocacy policy. So I've been really fascinated by that commitment of the NPF to really going deep into understanding our patient communication and I think I'm not the only one that's been really rewarded by that deep commitment that I've seen from our volunteers out there who have helped turn these patient viewpoints into really meaningful scientific initiatives. So we’ll talk about a few of these other programs here in a few minutes, but what they've all done is they've really been rooted in this deep and fascinating commitment to understanding the patient voice. And they've led us into directions where we can also not just be leaders in the nonprofit research space around psoriatic disease, but also leaders in listening to our patient communities. So all taken together, all of that is what brought me here to the NPF and at this point I've been here about two months so I’m just ah getting excited for every minute of it.

Matt: Well it's been a busy two months. I hope things are starting to slow down a little for you, but we're really excited to have you aboard.

Guy: Thank you.

Matt: NPF has a number of high priority initiatives and the organization is always working on advocacy and research and education, among other areas. Listeners can listen to a recent Psound Bytes™, episode 198 that talks about our progress in the area of step therapy legislation currently in front of the US Senate. There's a lot of other key things happening in advocacy. Leah, I was hoping you could speak to what you feel are the key areas of need in advocacy that the NPF is striving to improve for people with psoriatic disease.

Leah: You know everything that the NPF does is grounded in this goal of getting our community to better health. In fact, when NPF developed our current strategic plan and the last strategic plan, a big part of developing those driving agendas for us for the next five year period is listening to various communities. Listening to the patient community and the provider community, and others that have a role to play in getting individuals living with psoriasis and psoriatic arthritis to better health. And as we have listened, what we've done is build out an agenda, strategic plan for the Foundation that allows us to pursue solutions to each of those challenges. Each of those things that are keeping our community from achieving the best health they possibly can. And so as you mentioned, those areas that those activities have fallen into over the last decade plus have really been in the areas of research, advocacy and education. I think the good news story for our community is that today there are treatment options available for individuals living with all types of psoriasis and with all levels of disease severity, as well as psoriatic arthritis. And so unlike many communities where there aren't options, for our community there are options. Unfortunately, the frustrating thing for those of us at the NPF is we know that many individuals in our community aren't able to access those options to better manage their disease. And so we spend a lot of time looking at what those barriers are that are keeping people from accessing those treatments, keeping people from realizing better health. And then build out an agenda each year that has us advocating to federal and state policy makers to address those issues. One of the things that's been really amazing is the way in which the NPF has engaged with the community to bring the real experiences of people living with psoriatic disease to those policymakers at the federal and state level. In fact, we've done that with other chronic disease groups and really united the stories of our community and other communities that are challenged by a number of different access issues - those things that kind of put up a barrier between an individual and finding a physician or getting on the treatment that physician recommends. And so those are the issues that we end up advocating on at the federal and state level that can be everything from step therapy as Matt mentioned, to out of pocket cost issues, to prior authorization. Really, it's any challenge that's keeping someone in our community from working with their physician to get on a treatment and get to that better health.

Matt: That's really interesting and thanks for sharing that. We touched on something that's one of my favorite parts of all of this and that's the stories. I know from our past conversations that stories and the people telling the stories have an incredible power to persuade and to make people understand these really important key issues in a way that's personal and that resonates and sticks with somebody. How do such stories help NPF?

Leah: I totally agree with you. Stories are the most powerful tool we have in our toolbox to affect change. You know there is kind of this expression of changing hearts and changing minds. And I think what stories enable us to do is really to put a personal face on what is often these really kind of big issues, big challenges that have really big numbers associated with them. I had the opportunity recently to represent NPF at an international meeting of all the psoriasis organizations around the world. What amazed me was despite the different healthcare systems we have across the world and the different challenges communities have country to country, the stories are so similar. And what was beautiful to see was as other organizations and other patient advocates from around the world shared their experiences and the work that they're doing, just like us at the NPF in the United States, they are grounding their work in the patient stories too. And we all talk about, the burden of managing psoriatic disease, which has these really big numbers associated with it. In the US that number is up to $135 billion a year is the cost of psoriasis alone not even including psoriatic arthritis. That's just such a hard number to digest. But I think when someone stands in front of a policymaker and says, you know, this is what the burden of living with psoriatic disease has meant to me, this is how it's impacted my life and they talk about the fact that they haven't changed jobs because they're afraid to lose their health insurance or the fact that they are unable to pursue their dreams because of the challenges that they've experienced with stigma or bullying at different times. I think it just becomes all the more real and it enables a policymaker to see how, if they vote for a piece of legislation, for example, how that bill can change someone's life and there's a real person in their community that they're now helping. So I love to say that although policy and advocacy can be very complicated and legislation is certainly very complex, when you look at a bill before a federal government or a state. Our advocates actually have the most powerful tool in their story and they are an expert in that. And so I love encouraging individuals to tell those stories and to use their journey to change health outcomes for everyone else that's living with psoriasis or psoriatic arthritis.

Matt: And a great place to find those stories is in our Psound Bytes episodes. If you check back to #161, “I'm Unique Because of My Psoriasis”, I think you'll hear exactly the kinds of things that Leah is talking about there with the power of the patient's story and how sharing someone's unique personal experience really helps people understand the more universal experience that this community is having.I wanna transition a little bit to our research efforts as an organization and Guy, the National Psoriasis Foundation in recent years has allocated over $30 million dollars toward funding research through grants and special initiatives. Can you please speak to some of the priority projects that NPF has funded?

Guy: Absolutely. So some of our flagship projects are of course going to be your most prominent. So our Psoriasis Prevention Initiative is one that comes to mind. It harkins back to what Leah was talking about as the National Psoriasis Foundation Strategic Plan and one of the pillars of that plan is to identify the interventions that prevent the onset of psoriasis and psoriatic diseases. Specifically we’re focused on relapses and flares, and perhaps more importantly, the development of the related comorbidities because we know that psoriasis doesn’t just exist on its own, it's often accompanied by other conditions that we think of as being dissimilar, but actually might be connected to the underlying mechanisms of psoriasis. So the NPF has invested more than $6 million with a promise of investment across five years to support these prevention initiative projects. And they have certain requirements about them. They have to be multi institutional and they have to be multi-disciplinary. What that means is that we're teaming up with clinicians, with our basic science researchers or geneticists, and any number of different professions that you might think about in that health care community. And what these have amounted to is being the largest single grant investment in the National Psoriasis Foundation’s 55 year history. So we are currently in our third year of funding one of those projects with a focus on a very important comorbidity, that’s cardiovascular disease. We're excited about that project. It just reached a milestone of finishing up phase one of its execution. That project has identified a really novel way of preserving time and skill of the dermatologist in the clinic to focus their attention on the dermatological issues but still provide good surveillance of those cardiovascular comorbidities that we were talking about using what’s called a care coordinator model. And that care coordinator model is a third party, in this case the National Psoriasis Foundation, has come in and helps to work with the patients directly to identify risk of cardiovascular disease. And what this has resulted in is identification of very significant levels of unidentified cardiovascular risk in some of our patient populations. So at the end of the day, this is doing exactly what nonprofit organizations should be doing. It’s reducing and treating the risks that are associated with psoriatic disease. We have other ways of conceptualizing what prevention is, so in order to prevent something we have to be able to measure it. So preventing progression is really important. So as we think about psoriatic arthritis, there's a really major clinical initiative within our programs to look at creating a diagnosis for psoriatic arthritis that is better than the clinical diagnoses that are currently available. And this is really important contribution to limiting the pain associated with psoriatic arthritis and psoriatic conditions. So the lack of a good diagnostic tool has really been a challenge for our clinical community and we do think that that such a tool is going to reduce the long delays that occur in the diagnosis process. And of course we know that delays of even a couple of months in terms of getting the patient onto treatment can actually cause irreparable damage to the patient's body. So we're really excited about the two projects that are moving forward. Both of them have just released some results that they've acquired through the execution of their work. So one of these projects has been looking at psoriatic arthritis and comparing it to psoriasis in different areas of the body. And what they’re seeing is that if they look at different affected areas of skin they’re finding out that patients with psoriatic arthritis actually have different molecular markers in their body not only in the skin that is affected by psoriasis, but also in the skin that would otherwise appear to be unaffected by psoriasis, and that’s that’sincredible. And it points us to what we have believed for a long time that psoriasis and other psoriatic conditions really do need to be considered as something that’s affecting the whole body and not just one area of the skin. The other project that I referred to in the portfolio include a really fantastic project that’s looking at dozens of molecular markers and taking them all together to actually diagnose psoriatic arthritis. The field of creating these types of diagnostic tests have been around for a long time and we have ways of evaluating how good a diagnostic test strategy is and we can say that a diagnostic test might be of modest quality or good or fair or excellent. What we’re really proud of at the NPF is that the early results of the work that we’re funding on psoriatic arthritis diagnosis is really showing us that this particular test falls into the measurement area that is of the highest quality, of excellent quality. Can you go out and get it right now? It’s early stage research, unfortunately the answer is no. There’s a lot more for us to do and learn over the next couple of years, but it certainly says that the NPF’s funding programs in these specific projects are on the right track and the progress on these initiatives that I’ve talked about is going to continue. So I mentioned earlier the places that we’re funding right now we can think of them as the places where we’re leading discovery and so those are the places that really put a flag in the sand to say this is an initiative we need to follow through on. There’s another category of research at the NPF where we more listen to the investigators from around the world and ask them to send us their best ideas about what they think is going to help change the face of psoriatic disease research. And so we have lots of different mechanisms. We have mental health grants that look at depression and look at anxiety and look at ways of treating that. We have a portfolio of early stage discovery research which asks questions about what's the basic research things that are changing in psoriasis that we need to understand how to intervene upon. We have a huge portfolio of patient centered research that the data comes in from a lot of different resources. One of them is our annual survey where in this case it’s collecting a wide variety of perspectives on disease burden as well as the epidemiology of psoriatic conditions from our patient population. We are beginning to take that data and wrap that data back into our field of research so that we can help better design things like how clinical trials are studied. So that’s how the patient voice gets actually integrated into future clinical trials through National Psoriasis Foundation’s research studies. I’ve been really gratified to see all of this data returning into our strategic discussions and how we envision the next five years of our research programs, and it’s also becoming some of the talking points that I hear in our community of researchers that actually get reflected back to us. So we’ll hear members of the industry communities, our policy communities, medical and research communities, using that data that comes from NPF funded studies or NPF patients that are contributing their data through our surveys or focus groups, and these people are reflecting back that their understanding of what psoriasis and psoriatic conditions are is being influenced by that patient centered research.

Matt: That's really excellent. Thank you for sharing. One question that I hear often is why these projects or how does NPF choose what they fund? So can you talk a little bit about why it is so important to fund these particular research initiatives?

Guy: Well it’s very important to do so. NPF is the largest nonprofit sponsor of psoriatic disease research and so NPF is vitally important for getting new ideas started in a way that really provides the leadership necessary to direct other members of the field where to devote their resources. And so time and time again we see in our research portfolio that when the NPF gets behind a project, the dollars that come from industry or large government grants follow that. And so that's just one of the places where we're vitally important to our research community. But ultimately, we're driven by the patients, and we’re driven by the volunteers who help lead our organization. All of these projects that we're talking about really come from that leadership. They come from being close to the patient community, and close to our professional community. So we work with multistakeholder communities to review our research initiatives and help provide a very clear understanding of what is at the intersection of the needs and interests of these communities and then once we have that advice from our advisory communities then we as the NPF are able to take action on those research initiatives.

Matt: And some of those volunteer leaders can be found in our Scientific Advisory Committee. I know they do a lot of work guiding the NPF in selecting what research initiatives to pursue. Why is the committee so important for how NPF moves forward on research?

Guy: We all have our own ideas about where research might go, but it's really working with the true experts in our community that helps us make the right decisions. So these ambassadors from our professional research community and from our medical community, and from the patient community allow us to have that kind of really robust discussion about what is a good idea versus what’s an idea that's going to be beyond good and be instrumental in actually moving our community forward. So this type of leadership helps offer predictions of potentially relevant areas for us to pursue. They help evaluate the ideas that we receive from our community and integrate that with an understanding of what's out there in the world in terms of emerging data in both science and the issues that are happening in the clinics. And that guidance that we get from them results in the portfolio of research that we manage, which right now we actively have about 41 grants under management which reflects close to a $10 million portfolio of research that we’re managing right now.

Matt: And our listeners can tune into Psound Bytes episode 194, which recently highlighted one of these researchers, an NPF grant recipient Dr Lihi Eder, who is using ultrasound as a diagnostic tool for psoriatic arthritis. Guy, I heard NPF just recently approved research funding for 2023. How much has NPF allocated toward research this year?

Guy: Yes, the short answer is actually about $3.4 million in new funding, and that will contribute to that $10 million portfolio that I mentioned earlier. That's broken down into about 15 different new awards, new research initiatives. So I mentioned earlier that we have awards in different categories. We have translational work, which is our bench to bedside research that takes understandings from the research community and helps get them into clinics. We have those mental health grants that I talked about. We have basic research understanding studies. We also have a focus on junior investigators who need a little help getting started in being productive in psoriatic disease research and so we have career development grants that support that work force development. And we also have a really important stimulus type grant, this is something that we call the bridge grants that I’m really proud of. We have some fantastic numbers associated with them. But the idea behind them is that these are grants that help researchers out there in the community be more competitive for the very large dollar value government grants. So in that bridge grant program for instance, we're seeing about a 700% return on investment that the NPF stimulates, so when the NPF invests a dollar in a particular grant, we expect to see based on this data that we have, we expect to see $7.00 follow from federal sources.

Matt: That's a really outstanding return on investment. NPF has had a strong commitment to funding research obviously. From both of you, I'd love to hear what do you feel are some of the more interesting or exciting projects that NPF either has funded recently or is funding now? And could you offer some highlights? I thought maybe we would start with Leah since we haven't heard from you in just a little bit.

Leah: Thank you Guy for that wonderful summary of all the work we're doing. You know, I love hearing the impact NPF is making on the research side. I think as Guy talked about in many of the cases, the work that we're doing is work that wouldn't be funded or areas that wouldn't be researched without the NPF. And I think it really goes back to the strategic plan that I talked about earlier. As Guy talked about the Psoriasis Prevention Initiative - the PPI, and the PSA diagnostic test grant and what we're doing in mental health. Those are all things that came out of the current strategic plan, that came from this exercise of listening to what was needed both by patients and by researchers. When you think about the PSA diagnostic test grant for example, we know that as little as six months of delay between onset of symptoms and starting treatment could lead to permanent joint damage. And yet, as you heard many individuals go years before they get that diagnosis of psoriatic arthritis and are able to start treatment. And so I think that project is one that we could see having really significant impact on our community when it comes to definitively letting someone and their provider know that this individual has psoriatic arthritis so that treatment can be started immediately. As someone that lives with psoriasis myself, I worry about my own long term health and unfortunately, we know that individuals in our community die four years earlier than the average population. A lot of that is due to comorbidities and so the work that Guy talked about in the PPI initiative to address the comorbid burden our community faces is something I'm excited about. The Bridge Grant initiative that he just mentioned, where we support researchers that nearly got funded by a major funding agency like the NIH and what we call “just missed” getting that award so they can build their data set and go back and get that funding in a reapplication, has been a really exciting new mechanism that we've added to our research portfolio and Guy shared the great return that we're getting on that investment really showing the importance of those dollars helping researchers to literally bridge the data gap so that they can go back and have a successful reapplication at the NIH. And finally when you think about the mental health work that we're doing, that really has come from collecting data from our community and understanding the burden of living with psoriasis and psoriatic arthritis. One of the recent surveys that we did identified that suicide ideation is significantly higher in our community than in the general population. We've known for years that by living with psoriasis and psoriatic arthritis, our community experiences much higher levels of anxiety and depression, and reduced quality of life. But this recent survey that we did really showed us the challenges, in particular that our community faces with regard to considering suicide. It's in fact, according to the survey, about double what we see in the general population. And so that really has identified for us or reinforced for us, I would say the need to continue to fund mental health research. And so I'm really excited about the ways in which NPF is uniquely addressing each of these challenges. Each of these needs that our community has identified to us over the years as problems in places that they're being prevented from realizing the best health they possibly can.

Guy: Yeah, I might add to that perspective in a way that asks how are we looking forward on the promise of research in the coming years.So we’ve been talking about hearing what successes are coming out of the existing portfolio. But there's some really big questions that are just beginning to be addressed and in the research that we’re now studying and that we’re looking to study. So it goes beyond the ideas of the exciting new molecular treatments that I think are front of mind for many people. Those are present in our new awards, but really, we’re also starting to go back and ask the seemingly simple questions that have major importance for our patients and clinical communities. So questions like what drives pain? Is it just the immune system? Why do some drugs work better for pain than others? That's one of the types of studies that we’ll be funding in the near future. We can talk about personalized medicine, we know that not every therapy works for every person, and it's been very hard to understand which therapy is going to benefit which patient if given in which order. So we have projects looking at that type of question and even basic understanding of the natural history of the condition. So things you might have thought would already be known but really haven't been explored in the greatest depth and certainly not at the level of detail being explored now. So these would be things like sex differences, for instance, how does being male or being female genetically contribute to a different pattern of development of psoriatic conditions or progression of those psoriatic conditions? So there's a lot of promise for the future in these projects and a lot of effort into really thinking about what are the questions that are gonna matter most for our patient community and for our clinical community as we think about the studies that we’re going to be funding in the future.

Matt: And Leah, how critical do you feel NPF’s involvement is in driving advancements toward a cure for psoriatic disease?

Leah: Oh my goodness, it’s at the center of everything we do. Our mission is to drive efforts to cure psoriatic disease and to improve the lives of those affected. And every day we are thinking about both aspects of that. We talked a lot here about the improving the lives affected piece. But that first part of driving efforts toward a cure is certainly a driving focus for us at the NPF. I think when we talk to individuals that live with psoriasis and psoriatic arthritis, even individuals that are well managed today on some treatment, what we hear time and time again is that longing for a cure. And I think certainly every chronic disease community deserves a cure, ours included. Guy just talked about the future that many of us think about in terms of what is the legacy that we're gonna leave for our children? I think about my own children and the challenges they may experience if they develop psoriatic disease. And I think really at the end of the day that goal of eliminating the disease and the burden that comes with it is central to what the NPF does. So I'm grateful for everyone that's been a part of that journey with us, whether you're supporting financially efforts toward a cure or you’re a researcher studying what that would mean to get to a cure. It's certainly gonna take the hard work of a lot of different people contributing and yet I feel that at this point in time, we really have the opportunity to do that. And I'm incredibly optimistic about the chances of realizing that in the near future.

Matt: So one of the words I've heard quite often during this episode is collaboration. It's something I hear a few times a day here at NPF. Leah, in what ways does NPF partner with other organizations to advance steps toward finding a cure?

Leah: Yeah, collaboration is not just a buzzword, but at the NPF, it's really our approach to supporting our community. We have lots of resources, but they are limited and there's always going to be more need than what the NPF can invest. So what we really try to do, I think in building out our agenda, our approach to the work that we're doing both on a cure front and on the dramatically improving health outcomes front is to really look across the landscape and identify those other stakeholders that are interested in the same things we are. And then try to find places of partnership and collaboration. I think by uniting our resources and our energy, we have an amplifying effect and much better ability to actually achieve those goals that we have then if we were out there working on an island by ourselves. And so that's how we approach our work every day. And I think we've achieved incredible results by doing that. You see that on the access side certainly and the work that we've done in coalition with policy issues, but you also see it on the research side and on the cure side. And I'm really excited about how NPF has partnered with other physicians, with other researchers to move the needle. You look at things like the NPF and American Academy of Dermatology Guidelines, which have been really impactful. We've been working with IPC, the International Psoriasis Council, on a number of projects recently and I think through those initiatives we have the ability to really advance the field and bring meaningful change to individuals living with psoriasis and psoriatic arthritis.

Guy: Yeah, I would agree with that. NPF has also done an extraordinary job of making sure that psoriasis is not just a part of the collaboration with like-minded organizations but is also a part of a conversation amongst organizations that set the research agenda for the rest of our country or even the rest of the world. Leah spoke about an international conference that she had been a part of. The NPF is always at that table of large national groups that are trying to decide how to allocate money and to which disease. So should any particular organization be allocating money, all of these disease states that you can imagine exist in some type of competition with each other. There’s this adage out there that if you're not at the table, you're on the menu. And I think the NPF has done a really extraordinary job of always being in front of our federal partners or industry partners, healthcare administrators, international entities, to help them keep psoriasis front of mind when in an environment where otherwise quite frankly they might have opportunities to forget about psoriasis.

Matt: And with the two of you on this call, of course we've talked a lot about advocacy and a lot about research because we've got experts in that area, but I don't want to ignore some of the other major initiatives that NPF’s working on. Leah, what are some interesting things that NPF is doing in education for people with psoriatic disease?

Leah: When you look at our field, it's really amazing just in the 11 years I've been at the Foundation - the knowledge that we've gained in better understanding both psoriasis and psoriatic arthritis and all the other things that come with living with psoriatic disease. We've talked about comorbidities here today, like psoriatic arthritis and cardiovascular disease and mental health. But there's also I think a number of challenges that our community goes through when they're trying to achieve better health. And so at the NPF, one of the things that's really been quite remarkable is the way we have developed education programs for both patients, as well as healthcare providers, that really speak to each of these issues so that our community and the individuals that care for our community can be as knowledgeable as possible about these advancements and these new understandings of psoriatic disease, as well as having the tools to manage the disease, and to achieve the best health possible. One of the things that we've done in recent years has really been to try to create more specialized tools. Guy talked about personalized medicine earlier. We know every individual's journey with psoriatic disease is unique. My experience as someone with psoriasis is going to be different than the next persons. And one of the things we've spent some time thinking about is what are the different needs from an education perspective that both again individuals living with psoriasis and psoriatic arthritis, as well as healthcare providers, might have in trying to support different segments of our population and achieving better health. One example of that is the resources that we've created for individuals with darker skin tones. We have a Skin of Color Resource Center up on our website that includes a whole lot of different tools and educational materials speaking to that community in particular about some of the different needs and challenges that they might experience so that they can be an even stronger advocate for their own healthcare and work with their healthcare provider to achieve the best health outcomes possible.

Guy: I think one of things we do is really well is speak to our own audiences and then help to build the communication within our community. So I think for instance about medical education, we know that a lot of our physicians, especially in their early years do not get much training on psoriatic disease. And so we have a very significant medical education program and medical affairs programs that actually help link up senior members of our clinical community to the more junior members in the community or members of communities that might be in other disciplines. And what this does is it makes sure that everyone in our community is delivering on the state of the art in terms of evidence based care. So I don't think we have time on this call to go into all of those types of initiatives that we have on the medical education and medical affairs area, but it’s really a significant component of the impact of the organization.

Matt: So now we've talked a lot about what we've been doing recently at NPF, the research we've been funding and our advocacy efforts. I'd love for each of you to take out your crystal ball now and think about the next 5 to 10 years here. We'll start with you, Guy. What is your vision for NPF moving forward over the next decade or so?

Guy: Yeah, I’m gonna give you a somewhat vague answer in the beginning and it sounds political but it’s actually not. So where the NPF will go is going to be based on where our volunteers and the stakeholders send us. So we’re working on the scientific strategy right now. That’s in process. We’ve talked about it a couple times on this call but it really is grounded by the opinions and needs of our stakeholder community. So we’re on this year long process right now to gather and integrate those ideas to understand the needs of our community and to deliver a scientific strategy that will meet those needs. So if you ask me where do I suspect we’re going to end up? I think we’re going to be looking for places where we can make the biggest difference with a very precise application of our support and effort. So I look to places like improving diagnosis. I think you're going to see us continue to invest more in those areas. Gathering data from our patient community is certainly a core competency of the organization and it’s vitally important to how we think about research and it’s done at the NPF in a way that is very difficult for other organizations to match. So I don't think you'll see in the broad categories too many differences from what we're doing now, but certainly the specific direction within those categories may change a little bit.

Leah: Oh my goodness, I love this question. I think for me, NPF is really starting a new chapter. We’re an organization that's been around more than five decades. And yet, as I've shared here today, I think the moment that we're in right now is a really exciting one for the foundation because we've had these incredible scientific advancements and we're learning new things every day. I think we've realized that there's this unique opportunity for research and studying psoriasis and psoriatic arthritis to not just change the future for our community, but to learn things in studying psoriatic disease that can improve and change health outcomes for lots of different communities. And so when I think about the future and the vision for the NPF, my vision is a very bold one. I think we need to be aggressive in saying that we want to end the burden of living with these chronic diseases. We are going to move quickly to do that and we're going to push ourselves in partnership with all those volunteers and community members that Guy mentioned to achieve that. And so I would love 5 or 10 years from now to be in a place where the NPF of today looks very different and that we are making really even greater impacts on our community in all the ways that we've talked about today such that the course of someone's journey that's diagnosed with psoriasis or psoriatic arthritis looks very different. I've already said that I'm hopeful about a cure. I absolutely believe that is something that's achievable in our future and I'm excited to pursue this vision to get there.

Matt: Thank you very much Leah and Guy again for taking the time to be here today. It's been a really interesting discussion and I hope our listeners are learning a lot and finding it informative. I look forward to seeing what NPF's gonna accomplish with your continued leadership, and just wanted to leave a few seconds If you had any final comments that you'd like to share?

Leah: Well, I just want to say thank you for having the two of us. The time went very quickly and I look forward to continuing the talk with the listeners of Psound Bytes™, about all of the things that we're doing at the Foundation and ways they can get involved. We've been saying this year that the NPF is not a building, it's a community and we are grateful that each of NPF’s Psound Bytes listeners are part of that community and look forward to continuing to work with you to improve health outcomes for individuals living with psoriasis and psoriatic arthritis.

Guy: And from my end I'll just say we can't do it without the listeners on this call. I encourage you to find ways to get involved. Certainly take the surveys that we ask of people. I just can’t emphasize enough that that data really does get used. It does not go into a black hole. it goes out into our community and really helps define how research solves the problems that matter to the listeners of this show. So look for us on the website and you can sign up for our emails and you'll get some of those opportunities for getting engaged in research.

Matt: Leah and Guy, thank you so much for sharing your insights with us today. It has been incredibly helpful to hear about how far we've come and where things are going for the organization. I'm really looking forward to seeing how things progress. And thank you to our listeners! Psound Bytes™ will continue to provide the latest and most interesting information relevant to you and the management of psoriatic disease. Continue to listen and send in your comments to podcast@psoriasis.org. We'd love to hear from you! For more information about managing psoriasis and psoriatic arthritis, contact our Patient Navigation Center at 800-723-9166, option one, or email education at psoriais.org.

We hope you enjoyed this episode of Psound Bytes for people with psoriasis and psoriatic arthritis. If you or someone you love has ever struggled with psoriatic disease, our hope is that through this series you’ll gain information to help you lead a healthier life and inspire you to look to the future. Please join us for another inspiring podcast. You can find this or all future episodes of Psound Bytes on Apple Podcasts, Spotify, iHeart Radio, Google Play, Gaana, and the National Psoriasis Foundation web page. To learn more about this topic or others please visit psoriasis.org or contact us with your questions or comments by email at podcast@psoriasis.org.  

This transcript has been created by a computer and edited by an NPF Volunteer.

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