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Over 8 million people in the U.S., and 125 million worldwide, live with psoriasis—about 2–3% of the population. Far from being a simple cosmetic condition, psoriasis is an immune-mediated, systemic, inflammatory disease that can cause physical pain, reduced mobility, and increase the risk of cardiovascular disease, metabolic disorders, and other comorbidities.
“This community is really resilient and committed. So many of our patients want to give back,” says Jason Harris, Vice President of Government Relations & Advocacy at the National Psoriasis Foundation (NPF). “Some of our patients remember a time before any treatments were available. Now, we have a variety of new options and innovations, but what works for one may not work for another, and there’s still so much more work to be done when it comes to access and affordability.”
In recognition of Psoriasis Action Month this August, Bio.News sat down with the NPF to explore what psoriasis really is, the challenges patients face, and the effort to secure access to treatment as researchers and clinicians work toward a cure.
More than skin deep: Understanding psoriasis
There are five main types of psoriasis—plaque, inverse, guttate, pustular, and erythrodermic—and 1 in 3 people with psoriasis will develop psoriatic arthritis. Each type presents differently and can develop at any age, with the prevalence being most common among those in their 50s, at about 4.3%. Plaque psoriasis is the most common type, affecting 80–90% of patients with psoriasis. But very severe, rare forms like generalized pustular psoriasis (GPP) can become medical emergencies.
Janene Tirado, who had been diagnosed with plaque psoriasis in the 1990s, experienced an unexpected GPP flare that sent her to the hospital. Her symptoms included nausea, fever, and skin lesions, yet doctors unfamiliar with the condition misdiagnosed her with athlete’s foot.
Even experienced dermatologists might only see GPP once in a lifetime, so diagnosis is often very difficult, despite the fact that it differentiates from similar diseases in a way a trained physician should be able to identify quickly. In Tirado’s case, it took two days to receive proper care, eventually leaving her bedridden before rendering her disabled with damage to her hands and feet.
“I was losing skin. It was falling off like dead skin. It was purple and reddish, and very shiny,” she recalls. “I had to have a bedpan by my bed. Who would have thought this could happen because of the skin?”
After three and a half weeks, she began to recover. She worked with her doctor over the next seven weeks. Eventually, she started on a biologic medication that she continues to this day.
The struggle of getting diagnosed
As Tirado’s story shows, the struggle to get properly diagnosed is a serious issue in the psoriatic disease community—and she is not alone. Even those with the most common forms of psoriasis often face misdiagnosis.
Ayesha Patrick and her twin sister had symptoms for years before she was diagnosed in college. Her most severe flare occurred in 2020, at the height of the COVID-19 pandemic, when 80% of her body was covered in lesions, her hair fell out, and she developed significant joint pain.
“Many days I felt alone and sad,” Patrick says. “Thankfully, with support and willpower, I pushed myself through the toughest days.”
Patrick also worries about her children’s risk. According to NPF’s Psoriasis Health Indicator Report, if one parent has psoriasis, the lifetime risk for their child is 14–28%; without a parent with the disease, it’s 4%.
Her psoriasis also led to the development of psoriatic arthritis, with joint damage that is irreversible. More than 15% of patients with psoriasis may have undiagnosed psoriatic arthritis.
“Psoriatic arthritis joint damage is usually irreversible,” says Harris. “There are a lot of people that do everything they can to treat their psoriasis only to see psoriatic arthritis develop. It can just be really, really challenging for folks.”
The importance of treatment and maintaining access
Tirado and Patrick’s stories show just how important it is for patients to have fast and consistent access to treatments, which can range from topical steroids and non-steroidal creams to phototherapy and systemic treatments, including biologics.
But because the disease manifests differently in each patient, there’s no one-size-fits-all solution. Even when a treatment works, inconsistent access can cause it to lose effectiveness.
“If someone is on treatment, but then they lose coverage because of a change or loss of a job, or because their insurance makes them go through step therapy where it can be a couple months before they get back onto their original prescription, it might lose its effectiveness,” says Harris. “This has been proven. That’s just how these things are.”
Unfortunately, Seritta Frazee saw firsthand just how damaging things like step therapy can be for effective psoriasis treatment. In 2018, psoriasis lesions began to show on Frazee’s face, prompting her to take her disease more seriously and proactively find the right treatment.
Yet, Frazee was hit with a number of barriers to access. Originally covered by marketplace health insurance, Frazee had moved to employer-sponsored health insurance. The new insurer made her go through step therapy, making her try lower-cost alternatives before she could use the drug her doctor prescribed. Frazee had to work her way through a new provider and several treatment options—despite the fact that she had already established a treatment plan.
“This time, she experienced step therapy, as her insurer insisted on a potent steroidal topical and light therapy despite the prescription for a biologic,” the NPF writes. When Frazee was eventually put back on her original treatment, she found it no longer worked.
“One more failure on the ‘try and fail’ journey so common to those who experience step therapy for any disease or condition,” writes the NPF. “Of course, Frazee’s psoriatic disease continued to progress during the months of delays. She was left with insufficient treatment. She decided she had no choice but to hide her psoriasis with long sleeves despite living in the hot and humid Florida climate.”
Frazee’s story is one of many reasons that the NPF and its coalition partners are working hard to pass the Safe Step Act—a proposed Federal law that would protect people on employer-sponsored health plans against step therapy by creating a common-sense exceptions process.
Passing the Safe Step Act
When asked what his biggest advocacy goal for the awareness months was, Harris was unequivocal. “My goal for this month is to get the Safe Step Act introduced by the end of the month, or in early September.”
“Currently, when a health care provider prescribes a treatment, an insurance company may require the patient to try and fail on different treatments before they can access the one originally prescribed by their doctor,” the NPF writes. “These protocols do not consider the unique circumstances and medical history of the patient, often requiring a patient to use medications that previously failed to address their medical issue or could have dangerous side effects.”
First introduced in the U.S. House in 2017, with the Senate introducing a companion bill in 2019, the Safe Step Act would require employer-sponsored health plans to allow exceptions to step therapy.
“Patients will be granted an exception if the patient has already tried the required treatment and it was discontinued due to lack of efficacy, if treatments are expected to be ineffective, if treatments are contraindicated or will likely cause an adverse reaction or harm to the patient, if the treatment has or will prevent the patient from fulfilling their responsibilities at work or performing daily living activities, or if the patient is stable with their current treatment that was covered by their previous insurance plan,” the NPF explains.
“The reintroduction of this commonsense legislation in the 119th Congress emphasizes the critical need for federal legislation that ensures patients receive the most medically appropriate treatment in a timely manner,” says Harris.
If you are interested in learning more you can visit the NPF website.
