Not all patients benefit from progress against psoriasis

For people living with psoriatic disease, treatment innovation has advanced dramatically. Yet too many patients remain undiagnosed, untreated, or undertreated. The National Psoriasis Foundation (NPF) set out to understand why progress in treatment has not consistently translated into progress in patients’ lives.

Bio.News sat down with Katie Southwick, Vice President of Marketing & Communications at NPF to discuss their research on unreached patient populations and the lived experiences shaping their decisions.

Tell us more about your research on unreached patient populations. What inspired it? Why is there such a great need for this research?

There has been tremendous progress in psoriatic disease treatments. Today, patients are surrounded by messaging about the disease and new treatment options, whether on television, social media, or online. Despite that visibility, a significant portion of people living with psoriatic diseases remain undiagnosed or are still not taking advantage of modern treatment options. That disconnect led us to ask a simple question: Why?

As we dug deeper, we found that out-of-pocket cost and concerns about side effects were certainly a big driver. Importantly, we found that patients’ lived experiences often have a great impact on whether they continue engaging with the healthcare system. Negative encounters with healthcare providers, feeling dismissed, feeling unheard, or becoming discouraged after unsuccessful treatments can all influence future decisions about seeking care.

The need for this research is substantial. There are approximately 8 million people living with psoriatic disease in the United States, and another roughly 600,000 remain undiagnosed. Not managing psoriasis often leads to soaring health care expenses, productivity losses, and expensive long-term medical comorbidities such as cardiovascular disease or diabetes. Yet, many patients have no formal care plan or lack access to specialist care, particularly in rural communities. Understanding why patients disengage is essential if we want advances in treatment to translate into better outcomes for patients.

Your research suggests that the biggest barrier to care is “patient momentum.” Can you explain what this means?

Our research showed that many patients become stuck in what we call a “doom loop.”

Living with a psoriatic disease can be exhausting. Symptoms affect physical health, mental health, confidence, relationships, and daily routines. Over time, patients may experience frustration with the healthcare system, disappointment with not immediately finding the right treatment option that works best for them, or feelings of hopelessness. All of those factors build on one another and make it harder to take the next step toward care.

“Patient momentum” is really about helping people move forward again. Effective engagement is not simply telling someone there is a new treatment available. It is helping them believe that things can improve, that support exists, and that they do not have to continue struggling alone.

The study found that patients often settle into a “good enough” mindset, managing symptoms without seeking better outcomes. What are the risks of this approach?

Psoriasis is not just a skin condition. It is a chronic, systemic immune-mediated disease that can have serious long-term consequences when left inadequately managed.

When patients settle for “good enough,” they may not realize they are still at risk for disease progression and related health complications. For some individuals, that can mean the development or worsening of psoriatic arthritis, which can cause irreversible joint damage if not treated appropriately. Psoriatic disease is also associated with several comorbid conditions that can affect overall health and quality of life.

That is why one of our key messages is that good enough is not actually good enough. We want patients to understand that better outcomes are possible, and that staying engaged in care can help reduce the risk of more serious issues down the road.

What role does trust play in keeping patients engaged in care?

Trust is everything.

Patients are navigating an overwhelming amount of information today, and it is often difficult to determine what is evidence-based and what is not.

Organizations like NPF play an important role because patients need trusted sources of information and guidance. We work alongside leading clinicians, researchers, and patient advocates to help connect people with credible resources and support.

Trust also means recognizing that every patient’s journey is different. The same treatment approach does not work for everyone. Patients want to be seen, heard, and respected in their decision-making. Building that trust is critical to helping people move toward optimal care.

What needs to happen next to ensure that advances in treatment translate into action for the patients who remain disengaged from care?

Patients need to be met where they are. Disengaged patients are not necessarily choosing to ignore their disease. Many have experienced setbacks that have slowed their momentum. By listening to patients, validating their experiences, and demonstrating that better outcomes are possible, we can help more people move beyond the doom loop and toward a healthier future. The encouraging reality is that today’s treatments, combined with trusted support and education, can make a meaningful difference.

August is Psoriasis Action Month. NPF has launched our Is This a Thing campaign, which has the goal of empowering patients through education on psoriasis and validation that: “No matter what this disease does to make you ask: Is this a thing? The answer is typically: Yes, this is psoriasis.

NPF has also recently launched our Milestones to a Cure initiative. As part of this initiative, NPF is investing in innovative research designed to accelerate progress toward a cure for psoriatic disease. This funding opportunity will support researchers pursuing transformative, high-impact projects aimed at advancing our understanding of disease mechanisms, improving treatment approaches, and ultimately bringing us closer to a cure.

If you are interested in learning more about NPF and Psoriasis Action Month, visit https://www.psoriasis.org/psoriasis-action-month. Letters of intent for Milestones to a Cure are due Aug. 31. You can learn more here: https://www.psoriasis.org/milestones-to-a-cure-rfp/

Additionally, if you are a patient advocate, consider registering for the Biotechnology Innovation Organization’s Patient Advocacy Changemakers Event (PACE): an empowering and inspiring event focused on breaking barriers to access and ensuring that innovative medicines reach the patients who need them.

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