The National Psoriasis Foundation Talks Successes and Goals
The National Psoriasis Foundation was founded in 1966 from a small ad in the classifieds. Now it’s the leading patient advocacy group for 7.5 million Americans living with psoriasis and psoriatic arthritis.
A chronic autoimmune disease, psoriasis currently has no cure. This is something the NPF aims to change, while helping those affected along the way.
WomensHealth talked with the NPF about the latest research and developments.
WomensHealth: Tell us about 2016. What research is the NPF excited about?
National Psoriasis Foundation: 2016 was a good year for advances at every stage of the research process, from early discoveries made in the lab to new treatments becoming available to patients. NPF played a big part in helping answer key scientific questions about psoriasis. For example, scientists and doctors already knew that psoriasis is the result of a one-two punch from the skin and the immune system. An overactive immune system causes inflammation in the skin, leading to a pile-up of skin cells that take the form of plaques. But the mechanisms behind the immune-skin interaction haven’t been fully understood. In 2016, research teams funded by NPF published discoveries that identify specific proteins in the skin that help drive inflammation. This is important because once scientists learn more about how the skin can be a source of inflammation, they can start to develop new treatments that can be applied directly to the skin, leaving the immune system alone.
2016 also saw an important step forward in understanding the causes of psoriatic arthritis. Psoriasis and psoriatic arthritis are caused by a combination of environmental and genetic factors—which means that certain gene variations make someone more susceptible to the disease. In 2016, researchers discovered that some gene changes might be responsible for psoriatic arthritis alone—not psoriasis. This means that psoriasis and psoriatic arthritis may be caused by different genetic factors. Understanding what causes psoriatic arthritis is an important step toward being able to identify who will develop it. Up to a third of people with psoriasis will develop psoriatic arthritis, and early diagnosis and treatment is key to improving long-term outcomes.
And speaking of outcomes, one of NPF’s most important achievements of 2016 was publishing treatment targets for psoriasis. The targets set a timeline for patients and doctors to evaluate progress after starting a new treatment, making clear or almost clear skin the goal after three months of treatment.
WH: What new therapies or drugs are available that our readers should know about?
NPF: One of the most exciting drug approvals of 2016 actually involves a drug that’s been on the market for a while. Enbrel (etanercept) is a biologic drug that’s been approved for the treatment of adults with moderate to severe psoriasis since 2004. In 2016, it became the first biologic approved for the treatment of moderate to severe psoriasis in children ages 4 to 17.
About a third of people with psoriasis develop the disease when they are children, so it’s important to have effective treatment options available to pediatric patients.
Another biologic that gained U.S. Food and Drug Administration (FDA) approval in 2016 was Taltz (ixekizumab). Taltz is the second biologic to be FDA-approved that targets a protein known as interleukin-17 (IL-17), which is a key driver of psoriasis. The first was Cosentyx (secukinumab), approved for moderate-to-severe psoriasis in 2015 and the treatment of psoriatic arthritis in early 2016. Drugs that target IL-17 have been shown to be safe and highly effective, delivering completely clear skin and joint improvement to many patients. Otezla (apremilast) is an oral treatment that has been approved for psoriasis and psoriatic arthritis since 2014, offering patients a safe and effective therapy in pill form.
In terms of topical psoriasis treatments, new formulations can make applying topicals easier, like Sernivo, a spray that gained FDA approval in 2016.
WH: What continue to be the biggest challenges to those working in the field of psoriasis?
NPF: There are so many excellent treatment options for psoriasis and psoriatic arthritis, and more are on the way. But one of the persistent challenges facing patients and their health care providers is a lack of access to therapies. Out-of-pocket costs and other insurance practices can sometimes be a barrier between patients and the medications they need. Lack of access to specialists can also be a challenge. Dermatologists and rheumatologists are specially trained to treat psoriasis and psoriatic arthritis. But for many people, cost, geography, or other factors can prevent patients from seeing the specialists they need. NPF is working at the state and federal level to help overcome these access issues.
Economic hurdles can also be a challenge for psoriatic disease researchers. Funding from federal agencies and other grant makers continues to be limited, and applying for a grant is highly competitive, with many promising projects going unfunded. NPF’s grants program is an important source of funding for researchers in the field. We offer several different types of grants, aiming to meet the needs of researchers and clinicians at every stage of their career. In 2016, we awarded almost $2 million in grants to more than 20 research teams. Many of our researchers have gone on to win sizable grants at the federal level to continue their work, but the need for more funding remains.
Apart from access and funding issues, psoriatic disease itself is a highly complex and heterogeneous disease that continues to be a challenging area of study, even for those who have dedicated their careers to it. Psoriasis and psoriatic arthritis show up at different times, and have different symptoms and triggers, for different people. This disease keeps scientists on their toes. We are unlocking mysteries of psoriasis and psoriatic arthritis and forging new directions in treatment all the time. But to find a cure for psoriatic disease, we need to increase research funding and grow the pipeline of researchers focused on this area.
WH: What support is available to individuals and families who are living with psoriasis?
NPF: At the National Psoriasis Foundation, we understand that living with psoriatic disease can place a significant toll on those affected and their families. That’s why we’re proud to offer personalized support through our Patient Navigation Center. Staffed by a team of specially-trained Patient Navigators, we help those impacted get the best care, treatment and support needed to manage their disease. NPF navigators can answer specific disease-related questions, find health care providers and offer personalized assistance on access-to-care issues, including reducing treatment costs and appealing insurance denials.
By contacting our program, individuals will be connected to their own Patient Navigator, who will work one-on-one to ensure that they are taking advantage of all available resources and provide ongoing emotional support. Whether the individual is newly diagnosed or has lived with the condition for years, we’re here to support their journey towards a healthy life with psoriatic disease.
All Patient Navigation Center services are free of cost and available to all people impacted by psoriatic disease, including families and caregivers. NPF Patient Navigators can be reached by phone, email, text and live chat. Services are available in Spanish and other languages. To learn more, please visit www.psoriasis.org/navigationcenter.
WH: What goals does the NPF have for 2017?
NPF: We’re pleased to announce that NPF celebrates 50 years in 2017. As part of our celebration, we plan to commit to the most visible campaign in the organization’s history—with a goal of raising $2 million for early scientific research programs that will allow us to pursue several promising areas of research. This includes novel treatments that deliver powerful results, techniques for treating and preventing related conditions, and diagnostic and therapeutic tools that will deliver the right treatment, right away. In addition, we’re in the midst of an aggressive five-year strategic plan that aims to accomplish the following goals by 2019:
- Accelerate psoriatic disease research by investing at least 30 percent of our budget on scientific grants and fellowships; doubling the number of National Institutes of Health-funded scientists studying psoriasis and psoriatic arthritis; gathering a group of 1,000 people with psoriatic disease to collaborate on research; and evaluating the progress of psoriatic disease research toward the goal of a cure.
- Improve the health of people with psoriatic disease by doubling the number of people who are receiving appropriate treatment; cutting in half the number of people who report that psoriatic disease is a problem in everyday life; and doubling the number of health care providers effectively managing patients with psoriasis and psoriatic arthritis.
- Conduct the largest and most comprehensive realignment and expansion of our psoriatic arthritis program—including reducing time of diagnosis from four years to one—since NPF began serving this patient population.
NPF is also focused on a number of exciting programs and goals for 2017, including advocacy and government relations goals to expand access to treatments for patients, outreach goals for our patient community and their families, goals pertaining to the funding of research into psoriatic disease and goals for our Team NPF events. For more information on ways to get involved in NPF’s many initiatives, visit www.psoriasis.org.
WH: What areas of research is your foundation excited about for the future?
NPF: To date, NPF has awarded more than $15 million to researchers studying psoriatic disease. Our most recent pool of grant recipients is approaching the field of psoriatic disease from so many different angles, from exploring causes and mechanisms of the disease to the development of new treatments.
One area that is particularly exciting is research into comorbidities, which are other conditions that people with psoriasis and psoriatic arthritis may be at risk for. People with psoriatic disease are at risk for cardiovascular disease, diabetes and inflammatory bowel disease, to name a few.
Researchers are making great inroads in understanding the science behind what ties these conditions together—and with this greater understanding will come new approaches to treatment that tackle psoriatic disease and its comorbidities at the same time.
Patient-centered research is another promising area of research for NPF. Improving patient health is the overarching goal in all that NPF does, and one of the best ways to do that is asking patients what is most important to them. We offer many different opportunities to patients to get involved in psoriatic disease research. One of the most innovative is our online platform Citizen Pscientist, where patients can answer questions about their disease, keep track of data from everyone on the platform, and form their own hypotheses. Citizen Pscientist also involves a committee of researchers who use these hypotheses to inform their own work. We’re very excited to see what the future brings when patients work with scientists to set priorities for psoriatic disease research.
WH: What would you like female readers to know about the NPF that you haven’t addressed?
NPF: No doubt about it—treating psoriasis and psoriatic arthritis in women has extra considerations. After talking with women with psoriasis and psoriatic arthritis, as well as researchers and health care professionals from across the country, the National Psoriasis Foundation put together a free booklet called “The Skin You’re In” to address the unique concerns of women with psoriatic disease.
For instance, you may be wondering how your psoriatic disease will affect your plans to start a family. Certain treatments, such as methotrexate and soriatane, are absolute no-nos when trying to conceive and during pregnancy. Our booklet lets you know which psoriatic disease treatments are safe to take during this time as well as which treatments you want to avoid. Unfortunately, those with psoriatic disease are at risk for other conditions such as metabolic syndrome, cardiovascular disease and depression. The booklet contains exercise and diet tips as well as coping mechanisms that can reduce your risk for some of these conditions.
Last but not least, starting a new relationship can be nerve-wracking, especially when you have a visible skin disease. “The Skin You’re In” offers advice from other women who have been there and done it, and want to share what they’ve learned. To download our free booklet for women with psoriatic disease, visit https://www.psoriasis.org/about-psoriasis/women-and-psoriasis.