50 years of driving discovery

| Samantha Klingman

In 1967, treatment options for psoriasis were extremely limited, psoriatic arthritis had only recently been identified as a clinical disease and the one-year-old Psoriasis Society of Oregon officially became the National Psoriasis Foundation.

Since then, the Foundation has done quite a lot to advance treatment options for psoriatic disease, said Dr. Mark Lebwohl, chairman emeritus of the NPF Medical Board. “I think one of the reasons that there have been more drugs introduced for psoriasis than for all the rest of dermatology together in the last 50 years is because of the National Psoriasis Foundation,” Lebwohl said.

Early treatment options

John Latella, a Psoriasis One to One volunteer (psoriasis.org/one-to-one), advocate and ambassador for the NPF, was diagnosed with psoriasis while serving in the U.S. Navy in 1964.

Since Latella first began treating his psoriasis in the 1960s, his journey with psoriatic disease has included many different treatment regimens, some effective and others ineffective, and a few messier than others.

When Latella was first diagnosed, the only treatment his doctor recommended was anthralin (also known as Dithranol). The recommended use was to apply the anthralin topically to the skin and wrap the affected area with plastic wrap.
“It was very difficult to use,” Latella said. “I couldn’t put it on during the day because I was in the Navy. I wore white, and the anthralin would stain just about everything. I couldn’t put it on at night because it would stain bed sheets.”

In 1976, Latella was diagnosed with psoriatic arthritis, cervical spondylosis and ankylosing spondylitis.

“In 1976, there wasn’t any medication for psoriatic arthritis,” Latella said. “There wasn’t really anything until 2005, when Diloxin came into existence.”

Lebwohl, professor and chair of the Department of Dermatology at the Icahn School of Medicine at Mount Sinai in New York City, started practicing dermatology in 1983. The most common treatments prescribed for psoriasis at that time were anthralin, tar, salicylic acid, steroids, methotrexate and broadband ultraviolet light.

PUVA (the drug psoralen combined with ultraviolet A phototherapy) was still new, but it was very effective in treating psoriasis, Lebwohl said. However, it was less safe than modern-day phototherapies due to the increased risk of certain skin cancers.

Advances in treatments

The increasing number of treatment options available today has had a huge impact on people living with psoriatic disease. Many of these advancements are due to funding from the NPF, Lebwohl said.

“NPF has devoted an enormous part of their budget to research. A lot of the treatments that are coming out today have their roots in research that was funded years ago by the NPF,” Lebwohl said.

There have been many new medications and developments in treatment options for psoriasis and psoriatic arthritis over the last 50 years, including combination therapies, safer oral therapies, narrowband UVB (ultraviolet B) light and the introduction of biologics.

Latella has tried a number of these treatments, including topicals, Goeckerman therapy, PUVA, an oral medication called Soriatane (acitretin) and several biologics.

“The real breakthrough came with the introduction of biologics,” Lebwohl said. “[Biologics] showed us that we could get rid of psoriasis by attacking small portions of the immune system.”

Latella attended a 2004 NPF conference where biologics were discussed. Shortly after the conference, Latella got approval from his doctor at the Veterans Administration to start on the biologic Enbrel (etanercept).

Latella started Enbrel with a Body Surface Area involvement of 80 percent, but in 45 days, he was down to 10 percent BSA. Eventually, he had no psoriasis plaques visible on his body. “[My doctor] had never seen anything like it,” Latella said.

When starting the biologic, Latella weighed the risks and benefits of using a biologic. “I saw that the benefits far outweighed the risks,” he said. “I just had to be careful and watch for any signs and symptoms that might cause problems from taking the biologic.”

All of the biologics today are safer than methotrexate and cyclosporine, Lebwohl said. “They don’t damage the kidneys, they don’t damage the liver or wipe out the bone marrow. They are not associated with acute death rates, which we do see with methotrexate.”

Since 2006, Latella has been on the biologic Humira (adalimumab). He still has no psoriasis plaques on his body and does not suffer from any serious side effects.

Although Humira did not cure or reverse Latella’s psoriatic arthritis, it did stop its progression. “I still have [psoriatic arthritis,]” Latella said. “I know it is there, but it didn’t get worse. I met people where it did get a lot worse and they were wheelchair-ridden. I never got to that point thanks to the biologic.”

Today there are several options in biologics, including tumor necrosis factor inhibitors and interleukin-12, -17 and -23 inhibitors, which block specific parts of the immune system that can trigger psoriasis. (Tumor necrosis factor is a pro-inflammatory protein that helps trigger psoriasis. IL-12, IL-17 and IL-23 are cytokines, or proteins, that can cause abnormal activity in the body’s immune system.)

“With these drugs, we have the ability to clear almost anyone’s skin,” Lebwohl said. “In addition, we are much better at treating psoriatic arthritis. We are also clearly protecting against the cardiovascular risks of psoriasis.”

Overcoming pricing concerns

The cost of biologics has been problematic, Lebwohl said. “They are expensive to make. Nonetheless, the costs are out of reach for many of our patients. Today the most expensive biologics can cost as much as $90,000 per year.”

NPF has done a lot in terms of promoting legislation around the country to limit out-of-pocket costs for patients and works hard to overcome the restrictions that step therapy places on patients. Step therapy is the practice by insurers of requiring that patients try and fail with less expensive medications before “stepping up” to the drugs originally prescribed by the patient’s doctor.

“The political arm of the NPF has been hugely important,” said Dr. Abby Van Voorhees, current chair of the NPF Medical Board. “NPF has done fantastic work in terms of trying to maintain access for patients.”

Despite the high costs, the development of biologics has changed how psoriatic disease is treated and had a dramatic impact on the lives of people living with psoriatic disease.

“Not only are some of these treatments much more effective than some of our prior treatments, they are also much more convenient,” said Van Voorhees, who serves as the faculty chair at Eastern Virginia Medical School in Norfolk, Virginia. “They have been approved for use in children and for adults, and we have the ability to use them in broad situations.”

The future of treatment options

More treatment options for psoriasis are available than ever before, but research shows that the disease is still a significant problem for many. Surveys conducted by NPF reveal that most living with the disease are either dissatisfied with their treatment or not using treatments appropriate to their level of disease severity.

Now NPF’s Medical Board has set specific treatment goals, or targets, that will make achieving clear or almost clear skin the new standard of care for psoriasis. These targets were developed through a year-long process of research, discussion and collaboration among Medical Board members, other leaders in the field of dermatology, practicing dermatologists and the real experts: people living with psoriasis.

This treatment strategy, known as “Treat to Target,” was published online in the Journal of the American Academy of Dermatology in November 2016.

Under Treat to Target, you and your health care provider set specific targets or goals for improved health outcomes. The goals are meant to reduce the severity of plaque psoriasis so it covers 1 percent or less of your body within three months after starting a treatment. (The palm of the hand is equal to about 1 percent of the body’s surface.)

Establishing these recommendations aligns with NPF’s mission to drive efforts to cure psoriatic disease and dramatically improve the lives of those affected — a mission we've followed for 50 years.

Discoveries through the years

Dr. Robert Willan (1757-1812), the founder of dermatology, offers the first accurate clinical description of psoriasis.

C. 1900
Coal tar is a common treatment for psoriasis.

Dr. William Goeckerman (1884-1954) develops the Goeckerman therapy for treating psoriasis, combining coal tar with UVB phototherapy.

Corticosteroids are introduced as treatments for psoriasis.

Methotrexate is introduced to treat psoriasis.

Psoriatic arthritis (PsA) is identified as a clinical disease.

Cyclosporine is introduced to treat psoriasis.

NPF researcher Dr. Hans Ristow identifies interleukin-1 (IL-1) as a cause of rapid growth of skin cells in inflammatory skin diseases.

NPF researcher Dr. Michael Holick introduces vitamin D3 as a treatment for psoriasis. Vitamin D3 is used in Dovonex (calcipotriene), a topical psoriasis treatment.

Narrowband UVB phototherapy is introduced as a psoriasis treatment.

NPF researcher Dr. Alice Gottlieb and colleagues discover the role that interleukin-6 (IL-6) plays in the inflammatory response seen in psoriasis.

Dr. Kirk Wuepper publishes results from his genetic studies of psoriasis, conducted in partnership with NPF.

NPF researcher Dr. Christopher Ritchlin analyzes cytokines found in joint tissue of people with psoriatic arthritis, identifying key differences with rheumatoid arthritis.

NPF researcher Dr. Alice Gottlieb and colleagues are the first team to successfully treat a patient for psoriasis using an antitumor necrosis factor alpha (TNF-alpha) antibody. Anti-TNF-alpha therapies would become the basis for many biologic medications, including Enbrel (etanercept) and Humira (adalimumab).

NPF researcher Dr. Gerald Krueger and colleagues publish clinical trial results on alefacept, which would become an early biologic treatment for psoriasis.

NPF researchers Drs. Anne Bowcock, Alan Menter and colleagues publish multiple studies identifying genetic causes of psoriasis.

NPF researchers Drs. Gerald Krueger and Kristina Callis Duffin launch the Utah Psoriasis Initiative, a large database of people with psoriasis, supported by NPF funding.

Amevive (alefacept) and Raptiva (efalizumab) become the first biologic treatments approved for psoriasis.

The role of IL-23 in causing psoriasis is described. Stelara (ustekinumab) would become a biologic medication for psoriasis targeting IL-12 and IL-23.

NPF researchers Drs. Alice Gottlieb, Alan Menter and colleagues publish clinical trial results on infliximab as a treatment for psoriasis. Infliximab would become Remicade, a biologic used to treat psoriatic disease.

Enbrel is approved for the treatment of psoriasis.

NPF researcher Dr. Gerald Krueger and colleagues publish clinical trial results on infliximab as a treatment for psoriatic arthritis.

NPF researchers Drs. Dafna Gladman, Christopher Ritchlin and colleagues publish clinical trial results for adalimumab as a treatment for psoriatic arthritis. Adalimumab would become Humira, a biologic medication for psoriasis and PsA.

NPF researcher Dr. Joel Gelfand and colleagues identify an increased risk of cardiovascular disease and heart attacks in people with psoriatic disease.

Remicade is approved for the treatment of psoriasis.

NPF researcher Dr. Hyon Choi publishes the first of a series of studies uncovering comorbidities and risk factors for psoriatic disease.

NPF researchers and Medical Board chairmen emeritus Drs. Gerald Krueger, Mark Lebwohl and colleagues publish study results for a new psoriasis therapy targeting IL-12 and IL-23.

NPF researchers Drs. Anne Bowcock, Alan Menter, Wilson Liao and colleagues identify new genetic links to psoriasis and psoriatic arthritis.

NPF researchers Drs. Allen Bruce, Johann Gudjonsson, James T. Elder and colleagues identify the role of IL-17 in psoriasis.

NPF researchers Drs. Gerald Krueger, Mark Lebwohl and colleagues publish results from a clinical trial on ustekinumab. Ustekinumab would become Stelara, an anti-IL-12/23 biologic medication for psoriasis and PsA.

Humira is approved for the treatment of psoriasis.

NPF researchers Drs. Nehal Mehta, Joel Gelfand and colleagues discover that psoriasis increases a person’s risk of death from cardiovascular disease.

NPF researchers Drs. Dafna Gladman, Gerald Krueger and colleagues publish clinical trial results on golimumab as a treatment for PsA. Golimumab would become the biologic Simponi.

Simponi is approved for the treatment of PsA.

NPF researcher Dr. James T. Elder receives the first set of DNA samples from the Victor Henschel BioBank to study genetic causes of psoriatic disease.

NPF researcher Dr. Francesca Capon identifies gene mutations associated with pustular psoriasis.

NPF researchers Drs. Anne Bowcock, Gerald Krueger, Alan Menter, James T. Elder, Dafna Gladman, Wilson Liao, Kristina Callis Duffin and colleagues publish the first study using material from the Victor Henschel BioBank, identifying the first gene directly linked to psoriasis. They discover that mutations in this gene, known as CARD14, can be activated by an environmental trigger.

NPF researcher Dr. Nicole Ward and colleagues discover how psoriasis leads to cardiovascular disease. 

NPF researcher Dr. Alexis Ogdie and colleagues use microscopy techniques to analyze joint tissue in people with PsA, discovering important characteristics of the disease, such as vascular changes.

NPF researcher Dr. Chuanju Liu discovers anti-inflammatory properties in a molecule called progranulin and develops a drug based on this molecule called Atsttrin. He plans to test the drug in several diseases of the immune system, including PsA.

NPF researchers Drs. Alice Gottlieb, Christopher Ritchlin and colleagues publish a clinical trial results on ustekinumab as a treatment for PsA.

Stelara is approved for the treatment of PsA.

NPF researcher Dr. Lorena Riol-Blanco and colleagues discover the role of the nervous system in triggering psoriasis inflammation.

NPF researcher Dr. Dafna Gladman and colleagues publish a study of apremilast as treatment for psoriatic arthritis. Apremilast would become Otezla, an oral PsA medication.

Otezla (apremilast) is approved for the treatment of PsA.

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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