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Advancing Toward Prevention and a Cure

Part 1: A look at progress toward the NPF strategic plan at the halfway point.

[Editor's Note: On June 8, 2022 the NPF Board of Directors announced that Leah M. Howard, J.D., was selected as the next President and CEO of NPF. This article was first published January 19, 2022, six months prior, when Howard was serving as Interim CEO.]

“The strategic plan is used in everything we do as an organization,” says Randy Beranek, former president and CEO of the National Psoriasis Foundation (NPF). He and Ron Grau, chair of the NPF Board of Directors, appear in side-by-side windows on the Microsoft Teams meeting screen.

“The board and the NPF staff think alike when it comes to the strategic plan,” Grau says. “We look at an initiative, and we first think, ‘Does it fit within the guidelines of the strategic plan?’ If it does, great. If not, then why are we talking about it?”

Beranek joined NPF as CEO in 2008. On Dec. 31, 2021, he retired, and Leah M. Howard, J.D., who has been with NPF since 2012 and formerly served as chief operating officer, became interim CEO. Then, on June 8, 2022, Howard was named President and CEO of NPF.

Leah M. Howard, J.D., President and CEO

Grau joined the NPF Board of Directors in July 2014 and began his term as chair on July 1, 2021. When it comes to discussing the strategic plan, it is clear by the way he and Beranek play off each other on camera that discussions of adhering to the strategic plan and progress toward its goals were a regular part of the meetings they conducted.

“Any initiative that isn’t going to contribute to the successful completion of the strategic plan, we do not do it,” Beranek adds in agreement with Grau. “When NPF has its budget meeting each May, the Finance Committee sits down and goes line by line through the proposed budget for the coming year. And the first document we went through in that meeting was the strategic plan, to remind everybody of the goals we have set as an organization.”

How the Plan Is Formed

When Beranek arrived at NPF, the organization lacked a formal strategic plan. He quickly assembled a small group of board members and stakeholders to develop an ambitious plan that was concise enough to be useful and detailed enough to serve as a guide through half a decade. The first strategic plan was so ambitious, compared with what NPF traditionally had taken on, that the board sent Beranek and the group back to the drawing board to set more reasonable expectations. The plan that subsequently passed was “still ambitious,” says Beranek.

Randy Beranek, former NPF President and CEO (retired Dec. 31, 2021)

Today, the planning process has been expanded and formalized. “In June 2018, 16 patients, caregivers, clinicians, researchers, nonprofit consultants, a former industry executive, and board members joined NPF leadership staff to begin crafting a new strategic plan,” wrote Howard, Stacie Bell, Ph.D., Emily Boyd, and Beranek in an article on the strategic plan for Volume 4(4) of the Journal of Psoriasis and Psoriatic Arthritis in 2019. “Work began with a literature review of NPF staff and medical board surveys, revenue survey data and reports from the National Health Council and leading patient advocacy organizations, data from the National Institutes of Health (NIH), Blackbaud charitable giving report, and research papers including information on undertreatment and treatment trends in psoriatic disease. These data provided background needed to assess whether the organization was on the 'right track,' identify challenges and opportunities, highlight other stakeholders engaged in similar pursuits, and define goals and targets.”

Ron Grau, NPF Board of Directors Chair

Grau nods as Beranek speaks to how important it is to evolve the process until NPF is left with a brief, actionable, ambitious plan to guide its operations and decisions. In the end, “the strategic plan is an outward, community-facing document, so it needs to be high impact with concise statements,” Beranek says.

From Mission to Strategic Plan

The mission of NPF, to drive efforts to cure psoriatic disease and improve the lives of those affected, lies at the heart of the strategic plan. Driving efforts toward a cure means funding research and encouraging scientific discovery, which is apparent in the first part of the plan: “Lead collaborative, transformational research in psoriatic disease.”

The latter half of the mission, to support all those impacted by psoriasis and psoriatic arthritis (PsA), fuels the creation of the second part of the plan: “Increase the lifespan and health of individuals living with psoriatic disease.”

The final part of the plan is not quite as elaborate as the first two sections, but it is essential to ensuring the funding and organizational structure to carry out parts 1 and 2: “Secure the human, technological, and financial resources necessary to achieve NPF mission-related goals.”

How Is NPF Doing Under the Current Plan?

Let’s look at samples of the recent achievements of NPF and the community as they work together toward the mission and goals so clearly laid out for them. While not comprehensive, it is a significant glance into where things stand halfway into the current strategic plan.

GOAL 1: Lead collaborative, transformational research in psoriatic disease.

As the leading nonprofit funder of psoriatic disease research in the world, NPF continues to play a key role in funding grants and fellowships aimed at various aspects of disease and comorbidities diagnosis, treatment, prevention, and cure.

NPF funded $3.28 million in 2020 and – even with the challenges of closed labs and research institutions due to the COVID-19 pandemic – $2.82 million in research fellowships and grants in 2021. In both years, research funding accounted for about one-third of all NPF expenses.

Funding of the PsA Diagnostic Test Grant was launched in 2019 and now continues into a second phase. This grant funds researchers looking to identify a reliable diagnostic tool for PsA that could reduce delays in diagnosis and thus lessen the length of time PsA goes untreated. Untreated PsA can lead to irreversible joint damage.

NPF established the new More Than Skin Deep: Mental Health Grant in 2020. In 2021 it has funded three investigators looking into different ways to treat and prevent mental health issues associated with psoriatic dis-ease, including anxiety and depression.

At the 2021 NPF Research Symposium, where the focus of the event was improving health outcomes and addressing health disparities and comorbidities, Joel Gelfand, M.D., FAAD, professor of dermatology and epidemiology at the Perelman School of Medicine at the University of Pennsylvania, and his team were awarded $1.5 million by NPF through the Psoriasis Prevention Initiative (PPI) grant. This is the largest single grant investment in more than five decades of NPF history, and it is the subject of Part 2 of this story.

Goal 2: Increase the lifespan and health of individuals living with psoriatic disease.

In 2020 and 2021, members of the NPF Research team and other staff worked with Nehal Mehta, M.D., MSCE, FAHA, a senior investigator for the Section of Inflammation and Cardiometabolic Diseases with the National Institutes of Health (NIH) Heart, Lung, and Blood Institute (NHLBI), to create an infographic that now hangs on the walls of health care provider offices around the country. This poster was published by JID Innovations in 2021.

The NPF Marketing and Communications team worked with the NPF Research team to adapt this poster into a lay-friendly infographic and advertising campaign to increase the message reach to the community. Like the poster, the campaign focuses on raising awareness of the comorbidities and body-wide inflammation associated with psoriatic disease, as well as the lifespan implications of these comorbidities.

NPF has expanded continuing medical education (CME) offerings and other health care professional education opportunities, which now include the CME Psound Bytes™ podcast, the Dermatology-Rheumatology Collaborative series, and the Advance Practice Psoriasis Recognition Program for nurse practitioners and physician assistants.

NPF has played a leading role in state and federal efforts to ensure better access to affordable care. At current tally, 30 states have put laws in place to help protect patients from the practice of step therapy, which requires patients to try and fail other potentially ineffective treatment options before they can access the one prescribed to them.

At the federal level, NPF is a leader in the expansive, bipartisan effort to pass the Safe Step Act – national legislation to protect people from step therapy protocols. NPF has helped gain many bill sponsors from both parties in the U.S. House and Senate.

Since the start of the current strategic plan, the NPF Patient Navigation Center has provided free support and resources to more than 35,000 people impacted by psoriatic disease. Patient navigators have also helped thousands of people navigate issues related to health insurance and find appropriate and affordable care in their area.

Goal 3: Secure the human, technological, and financial resources necessary to achieve NPF mission-related goals.

NPF hired the necessary staff and revised organizational structure to support work to realize new revenue streams and maximize engagement with individuals within and outside the community.

NPF has continued to learn more about its diverse and growing community through diversity, equity, and inclusion (DEI) community surveys and focus groups. These DEI efforts enable NPF programs and activities to connect with previously unreached and underserved populations impacted by psoriatic disease.

NPF has increased the number of grants received in recent years, including a 2021 grant from the Centers for Disease Control and Prevention (CDC) that funds three years of multifaceted work. The work is aimed at increasing awareness and understanding of the systemic, inflammatory nature of psoriatic disease and the likelihood of developing comorbidities, with special attention to diverse or underserved communities.

Read Part 2

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