'A Future Free From Psoriatic Disease: The New NPF Strategic Plan' Transcript

Psound Bytes: Episode 228

Release date: July 1, 2024

“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 host for this episode of Psound Bytes™ highlighting the National Psoriasis Foundation’s new Strategic Plan. I’m NPF’s Associate Director of Media and Communications and the editor of Advance magazine and today I’m here with President and CEO, Leah Howard, and NPF Board Member Richard or Rick Seiden to discuss how NPF’s new five-year plan aligns with the aims and objectives that are important to you – finding a cure for psoriatic disease and bettering the lives of those impacted.

Rick has been involved with NPF for over three decades including previous service as the Chair of the Board. He is a retired attorney who lives with psoriasis and psoriatic arthritis. In his service to the NPF community, Rick has been on countless committees and acted as a patient advocate before Congress and the U.S. National Institutes of Health. In 2016 Rick received the NPF Lifetime Achievement Award. 

Leah has been with NPF since 2012 and is currently the President and CEO. She is a lawyer and a patient rights advocate who has lived with psoriasis for more than 20 years. For more than a year now, Leah has been working with stakeholders throughout the psoriatic disease community to develop the strategic plan that will guide the National Psoriasis Foundation’s activities for the next half-decade. She has a Bachelor of Arts degree in government and international relations from the University of Notre Dame and a law degree from George Mason University School of Law. Leah is based at NPF’s headquarters in Alexandria, VA. She was previously a guest on episode 200 of Psound Bytes™ discussing research activities and NPF’s efforts to change health outcomes.

Welcome Leah, and welcome Rick. It's a pleasure having you here today. Rick, I'd love to start by hearing more of your story for some context for our listeners. You've been a part of this community for a long time, and I'm curious how NPF has changed since you were first involved with the organization.

Rick: Well, first of all, I was diagnosed with psoriasis and psoriatic arthritis in the 1970s. In the early 1980s, I noticed an NPF flyer in my dermatologist’s office so I signed up as a member. In 2003 I was elected to the NPF board. Back then, our annual revenue was less than three million and its annual research spending was in the low $300,000. Over time NPF became more focused on development, and by 2021 our revenue had grown to $12 million and our annual research grants totaled $3.5 million. In recent years, NPF has adopted a much more proactive approach to major grant-making, soliciting proposals where NPF chooses the subject, and NPF has made multi-year multi-institutional grants to researchers. Two examples are the PsA Diagnostic Tool grant and the Psoriasis Prevention Initiative, which is focused on the cardiovascular implications of psoriatic disease. The other major change has been in advocacy. Back in the early 2000s, NPF made occasional appearances before the FDA relative to drug approval. In 2004 we held our first Capitol Hill Day where NPF encouraged members of the psoriasis community to come to Washington, D.C. to advocate for adoption of federal legislation that would be beneficial to our patients, including funding for the National Institute for Arthritis, Musculoskeletal and Skin Disease, or NIAMS (as we will call it here), reimbursement for phototherapy, and the creation of a CDC registry of psoriasis patients. Over the years, we have also advocated for guardrails on step therapy, copay expansion, and other topics that affect access to care. We have also initiated an extended advocacy at state legislatures on similar topics, largely because many of them are regulated by insurance regulations by state, which typically is done at the state level.

Matt: And we're here today to really talk about how all these activities are now managed as you went over so much of what NPF has taken over the years. Leah, why is the National Psoriasis Foundation utilizing a strategic plan and what does the plan help us accomplish?

Leah: Yeah, it's amazing to hear Rick’s kind of walk through the history of the NPF, isn't it? And as we look to the future for our organization, I think a strong strategic plan really plays a critical role in guiding any organization but in our case, the National Psoriasis Foundation for the coming five-year period. When you have a strong, bold strategic plan, what it does is really articulates where you want to be years from now to both serve the community and to give you critical direction on the steps that it's going to take to achieve those goals. Once you have that plan in place, you can use that plan to establish benchmarks and measure progress, and really identify the impact you're looking to have throughout the plan period. One of the things I often say here at the foundation is that if some program or activity or expenditure doesn't get us closer to our strategic plan goals, then it's not something we should be undertaking. And so I really see the strategic plan as a critical tool in evaluating opportunities and prioritizing resources for the organization in the coming years.

Matt: That's really helpful. Rick, I'm interested in your perspective as a person living with psoriasis and with PsA. What would you say are the highest priorities of NPF that we should be addressing in the strategic plan?

Rick: Matt, there are a number of priorities. First and foremost, NPF needs to continue to fund research grants that may lead to the discovery of a cure for psoriatic disease or to foster remission of the disease. Our grants enable researchers to initiate proof of concept studies or to extend basic research by translational grants that aim for development of enhanced treatments for psoriatic disease. If our researchers can identify the source of the disease, hopefully they can develop the means to intercept the disease at an early stage. NPF must also maintain and expand its advocacy efforts for access to care in order to ensure that the continuously improved treatments are available at reasonable costs to our patients without undue burdens imposed by insurers.

Leah: Matt, if I could just add to what Rick just shared. Also as someone that lives with psoriatic disease but whose had a very different journey than Rick has had. My disease is much more mild and I've not experienced the same comorbidities that have really challenged Rick. I think one of the things that I appreciate about this plan is how it acknowledges that each of us that live with psoriasis and psoriatic arthritis is on a different journey in managing our disease. And the second goal of this new plan, which is focused on optimizing health, recognizes that the barriers each individual faces in our own communities is also different. And yet the foundation really needs to be working across the entire healthcare landscape to break down all of these barriers and address all of these challenges that are keeping our community from realizing their best health.

Matt: Thank you both for that perspective. That's important to hear Leah. We are often talking about how NPF was founded by a person living with psoriatic disease and how people who experience psoriatic arthritis or psoriasis are at the heart of all the decisions and the work that NPF takes on. Leah, how did NPF incorporate perspectives like Rick’s and others into the development of the current strategic plan, and how were some of the stakeholders involved in the process?

Leah: This is one of the things I'm so excited about with the release of this new plan because this strategic plan is really a testament to the collective efforts and insights from an incredibly broad spectrum of stakeholders. Over the course of about 18 months, we held dozens of meetings, discussions, workshops, we executed on a survey instrument, and these went to a variety of individuals, both individuals that live with psoriasis and psoriatic arthritis, as well as those who care for our community, caregivers, researchers, and other organizations that touch the psoriasis and psoriatic arthritis community. We even engage the pharmaceutical sector, as well as health insurers. And through these many conversations and many activities, I think we gained really profound learnings that have enabled us to build a plan that's not only scalable and forward-looking but is also reflective of the current needs and challenges faced by our community. As we undertook these activities, one of the things that we consistently noted was we only know what we know at the NPF, right? And these other healthcare stakeholders, I think have a line of sight and a view that's different than ours. And so if we want to build the most complete plan possible, it's really critical that we be talking to as many different people in the healthcare marketplace as we can. As I said, a critical piece of this was engaging with individuals that live with psoriatic disease like Rick, as well as the provider and research or community. And one of the things that I thought was fascinating was as we started to compile all of the feedback and information we received, what we noted across these hundreds of points of input was incredibly consistent themes. And so whether you were talking to an individual living with psoriatic disease or a provider or someone else, what we continually saw was feedback that got to the challenges that the community has in getting good care, that access and what we often call kind of these utilization management challenges. Those things within the health care system that are often barriers to getting on to whatever therapy your provider feels are going to be most appropriate. Certainly a lot of input around the importance of continuing to have a robust research enterprise as Rick described, and also the value both patients and providers get from the education programs we offer. So as we pulled all of that together, I think we were able to create a plan that not just reflected this very collaborative comprehensive set of activities to build a plan. But I think it also is probably our best position strategic plan for the organization for the future because we had so much input from so many different audiences. 

Matt: Thank you. And Rick, you mentioned earlier the importance of finding a cure for psoriatic disease. As in the past, the new plan addresses the need to find a cure, which is again a top priority in the mission of the National Psoriasis Foundation. Can you please address what some of the strategies are for investing in milestones for a cure?

Rick: Sure. Internally, NPF relies on our Scientific Advisory Committee and our Medical Board, both of which are comprised of researchers and clinicians who focus on psoriatic disease to develop the subject matter for milestones for a cure. We know that psoriatic disease is a chronic systemic disease that involves mediation of our body’s immune system. We have come to learn that there are multiple genetic triggers for the disease. So far, pharmaceutical companies have developed highly targeted therapies, which have worked well on 70 to 80% of our population with moderate to severe disease. No one drug works for everybody, and no drug works forever for anybody. One somewhat unique aspect of psoriatic disease is that it involves so-called resident memory T-cells within the immune system, which helps explain why a patient may see a recurrence of psoriasis in areas at a location that has been successfully treated with topical once that patient suspends treatment with that topical.

Leah: As Rick noted, NPF is incredibly fortunate to have the leading experts in psoriatic disease as advisors and collaborators, and they were also folks that were part of that activity that I mentioned a minute ago that went into building the plan. So now as we release the new plan I anticipate we’ll continue to work with these advisors to do things like refining our research grant call for proposals to respond to this new strategic plan. So I'm really looking forward to hearing their feedback and their thoughts on how we might invite new research ideas focused on this concept of milestones to a cure.

Matt: For you both, how critical is it for NPF to foster the growth of the research and clinical workforces to help accelerate this research?

Rick: As a board, we have recognized the need to continually encourage young researchers to pursue a career in psoriatic disease research. We support early stage researchers and encourage them to advance their research with larger grants from NIAMS. We have received ongoing encouragement from NIAMS to maintain our support for young researchers.

Leah:  I'm incredibly privileged to get to speak with many researchers in our field through various NPF functions. Matt, as you ask that question, I think about a meeting that we had a year or so ago where one of the leading researchers in psoriatic disease was there and we were just kind of having a side conversation during the event and they made a comment that really stuck with me. We were talking about their work, which is incredibly exciting and has gone on to receive funding like what Rick talked about from the National Institutes of Health and they sort of mentioned as an aside to me this worry that they have about who's going to follow in their footsteps, who's going to pick up the torch from them, and really carry this critical work forward. So as we think about the role of the NPF plays, I think we need to continue to ensure that the next generation of scientists is inspired to study psoriatic disease and has the support early in their career to lay that foundation for successful efforts later on.

Matt: NPF has long been committed to creating better health outcomes for people with psoriatic disease. And we have seen tremendous strides lately in the treatments for psoriatic disease and for the prevention of comorbidities. But access to these life-changing treatments is still a challenge for so many in our community. Rick, what strategies will NPF use to help improve access to the appropriate care and treatments, and how important is this area of focus?

Rick: One of our major frustrations is that we know that there are dramatically improved therapies for psoriatic disease, including but not limited to the biologics. However many of these drugs are quite expensive and health insurers have created certain barriers to access to these drugs, including but not limited to high copayments, restricted formularies, pre-authorizations, step therapy, and copay accumulators among others. NPF has had success in advocating especially at the state level for reducing copayments for phototherapy and the imposition of guardrails on the use of step therapy by insurers. Basically, we have sought to impose some due process standards relative to appeals or claim denials. NPF has also conducted roundtables and one-on-one discussions with representatives of insurers. In these discussions, NPF has focused on the comorbidities of psoriasis such as psoriatic arthritis, diabetes, and cardiovascular issues, which affect many of our patients. We are striving to get the insurers to take a holistic view of their insured psoriasis patients to recognize that early diagnosis and early treatment may lead to remission and will substantially reduce the likelihood of serious complications of comorbidities such as joint replacement surgery and hospitalizations.

Leah: I'm so glad Rick talked about both advocacy efforts as well as efforts to engage decision-makers like health insurance companies. I've been in Washington for almost 25 years working with organizations like the National Psoriasis Foundation, and I talk to so many colleagues and friends at other foundations who don't have good treatment options for their communities, and we are so fortunate in our space to have so many options. Really, regardless of what level of disease severity you have, you and your provider have choices when it comes to your care. And yet, as you know, and as the second goal of our strategic plan is really targeting, so many in our community are not realizing those good health outcomes that come from these treatments. And so, for almost a decade NPF has been engaging with health insurers alongside the work that we've traditionally done with policymakers really with this goal of assisting those that have a role to play in designing healthcare, with designing better care for our community. And this plan really includes intentional efforts to continue that work alongside the policy work we've been doing for longer, really with that goal of improving the overall landscape so that our community has better access to care. So whether that's through better-designed insurance or new legislation, say at the state level where we've been really successful in the last decade. There's a lot of opportunity to really influence the ability our community has to get that good care and to get on the top quality treatments that we have today. 

Matt: And Rick, what are some of the other key components that are going to help us achieve this goal of better care?

Rick:  The psoriasis community deserves to have the highest quality of care from dermatologists as to the skin conditions and from rheumatologists as to the psoriatic arthritis condition. The first step was professional education, so the NPF has worked with both the American Academy of Dermatology, otherwise known as AAD, and the American College of Rheumatology, ACR, to develop guidelines for the treatment of psoriatic disease. NPF has developed recommended algorithms for treatment and has developed continuing medical education, or CME coursework, as an accredited provider, including podcasts for medical professionals. We are working with both the AAD and the ACR to continually update their treatment guidelines to maintain pace with rapidly evolving topical and biologic treatments for psoriatic disease because the health insurers rely on these guidelines in part in making their coverage decisions. We have an Annual Residents Meeting for second-year dermatology students. And in the recent past, we've adopted a similar program for rheumatology students in medical school. The second step is ensuring that patients have directories for medical professionals in nearby clinics. Now we recognize that there is an insufficient number of dermatologists and rheumatologists in the rural areas. In addition to our directories, we have encouraged our health care professionals to practice telemedicine to enable our rural patient population to access care without driving great distances. We also recognize that there are underserved patients in low-income urban areas, even though there may be a number of dermatologists, rheumatologists there, they don't have access to them. NPF has developed CME programs on the treatment of people of color, and we have also worked with Medicaid and Medicare insurers to reduce barriers to care for our low-income psoriasis patient population. 

Matt: Leah, do you have any additional comments about strategies to improve or perhaps even optimize health outcomes for people with psoriatic disease? 

Leah: As you can hear from Rick’s overview there are a number of strategies that NPF will be pursuing to achieve this goal to optimize health of our community. As Rick started his discussion in this goal, we know that the opportunities for our community to achieve good health, which in the case of psoriasis means getting to clear or almost clear skin, are vastly different than they were even just 20 years ago. And yet so many people in our community are still not treating their disease in a way that gets them to these amazing outcomes. So in developing the strategies and support of this goal we did a lot of the listening like I talked about earlier to both patients and providers about what's challenging them. And then we mapped out activities that could positively impact each of these issues. And so you'll see that really reflected in this goal. I do want to add and I hope we talk about this a little bit more that achieving success in this goal will require significant contribution with others who are committed to the same improvements. Of course, that includes our patient community as well as providers, researchers, caregivers, other patient organizations and other community leaders, and may even include non-traditional partners like employers, pharmaceutical companies, and health insurers.

Matt: Yes, since long before Leah or I got here and probably before Rick even got here this community was built on collaboration. It was a key component of NPF’s success. I'd love to hear from you both in your own words, how important is it to collaborate, work together, and partner with others to develop and implement the strategies to help us achieve the goals that we've outlined in this plan.

Rick: Well, we are well aware that NPF itself is not capable of doing the scientific research. So we collaborate and partner with academic institutions and individual researchers to accomplish our research strategies. We also collaborate with the grant-making government agencies such as NIAMS, CDC, and PCORI to fund our research initiatives. In advocacy, we have come to learn that working in coalition with other patient advocacy organizations such as the Arthritis Foundation, among others, is a successful way to represent a much larger group of patients with common objectives, especially with regard to step therapy, guardrails, and copay accumulator program restrictions which are certainly not limited to the psoriasis community.

Leah: Rick’s so right and this is what I was getting at a minute ago. Given our limited resources, we need to be incredibly strategic in identifying others who care about the same issues that we do and partnering with them to try to amplify the impact that any one of us can have individually. Rick gave you some examples on the research side and on the advocacy side and its been amazing to see the successes and the wins we've been able to have on behalf of the psoriatic disease community despite not being one of the larger patient organizations in Washington. So I'm incredibly proud of our history of doing these collaborations and achieving collective success that benefits those living with psoriasis and psoriatic arthritis, as well as those living with a number of other chronic diseases.

Matt: Thank you both. It seems important, as we discuss the limited resources and the ability to collaborate with partnerships to help NPF punch above its weight, so to speak. We need to look at the fact that activities within the strategic plan are going to require funding to move forward. Leah, what revenue-driving strategies have been identified to help NPF achieve this outlined plan?

Leah: So the National Psoriasis Foundation is a nonprofit organization. So we rely on funding from many different sources to fund our annual budget. As we look to this next strategic plan, we are fully committed to maximizing financial support for each of the initiatives that are contained within the plan.  Collaboration is going to be a consistent theme here. And so I would just say in collaboration with our Board of Directors, our Medical Board, Scientific Advisory Committee, community clinicians, key volunteers. It's really going to be essential that we build large-scale funding opportunities for donors and organizations that can make a transformational impact on the work that we do and the patients that we serve. Of course, at the same time, we'll have to continue maintaining those traditional bread-and-butter revenue-driving activities that every nonprofit has, things like our annual appeals and our end-of-year campaigns. Those all drive revenue back into each of the different activities we've been talking about here today.

Matt: And Leah, what do you feel are gonna be some of the biggest challenges in meeting this plan?

Leah: I think that the challenge really is with any multi-year plan in particular, you have no ability to predict what's going to happen in the world around your organization. And so in the time that I've been at the NPF, and certainly the decades that Rick spent involved, there's been a lot of evolution in the healthcare space. When the Board of Directors approved our current strategic plan or our last strategic plan, the one that's expiring on June 30th of 2024, certainly they had no idea that a worldwide pandemic would strike months later. And so, I think that's a good reminder for all of us, both the staff of the organization as well as our most committed volunteers to recognize that there's only so many factors that we have the ability to control. But I will say one of the things about this plan is I think there's unbelievable flexibility here for us to adjust to a changing landscape and we certainly have seen that over the last several years when it comes to access to medicines for example. There's been a lot of change and a lot of progress, and I think this plan gives us the ability to continue to adapt as those changes might occur in the world around us. Matt: Thanks Leah. Rick, as a person with psoriatic disease and with your longtime involvement with NPF, what do you believe are the keys to ensuring the success of this particular strategic plan?

Rick: As a long-time NPF board member and member of the Community, having seen how far we have come in the past 20 years, I'm confident that this strategic plan is the right roadmap for us going forward. Back then, both patient and public awareness campaigns were necessary. Direct-to-consumer advertising has eliminated this problem. For NPF continuing to take the lead as a catalyst for future research will be vital to our success. Obviously, funding for that research will be critical to our mission. Expanding our advocacy through coalitions will mean that we will be speaking on behalf of a patient population of 50 million or more rather than our patient population in psoriasis of eight million in the United States. Continued focus on the comorbidities implications of psoriatic disease will be critical for our research, fundraising, advocacy, and education efforts. The keys to success of our strategic plan will be our continued and expanded engagement with our patients and their caregivers, the dermatologists and rheumatologists who serve them, the psoriasis research community, the government funding sources, the health insurers, and the pharmaceutical industry. 

Matt: Thank you Rick and Leah for such an interesting discussion about the activities and strategies that NPF's going be employing over the next five years. Do you have any final comments that you’d like to share with us today?

Leah: Well I would just love to end by making a direct invitation to our listeners to connect with the National Psoriasis Foundation and to partner with us as we work to execute on this plan and to move the community forward in the next five years. I'm excited to hear from our community about the pieces of this plan that they are most excited about and they are most interested in. And I would just say, I hope that as you utilize the plan and engage with the plan, you come back to us and choose to get involved with the organization as we work to execute on it. I can tell you from my more than a decade here that NPF would not be the organization that it is today without the support of our community. And so I know as I look to the next five years, I am confident that with your collaboration, we can have even greater success and impact on behalf of individuals living with psoriasis and psoriatic arthritis.

Matt: Thank you Rick Seiden and Leah Howard for being on Psound Bytes™ today to offer a look at NPF’s new Strategic Plan. I’m personally excited to get to work alongside the leaders, volunteers, and supporters that make the National Psoriasis Foundation’s community so unique. We have a lot of work to do but we are guided along the way by this plan that gets us to the goals most important to those who live with this disease. It's important work and I’m honored to do it beside so many dedicated staff members. If you know someone who could benefit from listening to this episode be sure to share the episode link. And finally, thank you to our sponsor, Bristol Myers Squibb, who provided support on behalf of this Psound Bytes™ episode.

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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