The Benefit of Psoriasis Advocacy for Dermatologists

What role does a nonprofit patient organization play for medical professionals? For an organization such as the National Psoriasis Foundation (NPF), it can mean supporting and complementing the work dermatologists do every day with patients for a disease commonly seen in the dermatology office or clinic.

“The vision of NPF right now is increasing the length of people’s lives with psoriasis,” said Jerry Bagel, MD, MS. Dr Bagel is director of the Psoriasis Treatment Center of New Jersey, practicing at Windsor Dermatology in East Windsor, NJ. He explained that the Foundation’s work is multifaceted, with research funding initiatives such as developing a test to diagnose psoriatic arthritis (PsA), developing clinical guidelines and recommendations for care, providing continuing medical education, and advocating with payers and lawmakers. These initiatives all help improve the psoriasis care provided by dermatologists.

Getting Personally Involved

Dr Bagel is an active President’s Council professional member and advocate for the NPF and explained that his role has changed over the years. Approximately 20 years ago, he was appointed to the NPF Medical Advisory Board, of which he served four 3-year terms during that time. He contributed his experience on clinical trials from his practice and general clinical knowledge, collaborating on articles and position statements to help guide care for people with psoriasis. His insights were invaluable to helping craft guidelines that help centralize the evidence for psoriasis care, particularly for special patient groups such as children, people who are pregnant, or patients with hepatitis C or HIV.

Since his first days of involvement, Dr Bagel has expanded his own commitment to the organization to pursue some of his own passions. “Unfortunately, in 2004, my brother abruptly passed away. In honor of him, I started the President’s Council, comprised of physicians who are most interested in psoriasis and PsA. We have raised well over $1 million for research,” said Dr Bagel. He noted over 30% of the NPF budget, approximately $4 million, is dedicated to psoriasis and PsA research. “What I am trying to be vigilant about is raising more funds, more capital, for the NPF,” explained Dr Bagel. We need to go out into the public and really have more grassroots efforts, with more physicians being professional members of the NPF.”

He is now part of the NPF Board of Directors, including the Research Committee that peer-reviewed grant applications to determine if research matches the NPF goals and strategic plan. “Research grants are coming in from Israel, Japan, Germany, India, Argentina, Manitoba, Vancouver, New York, San Francisco...[all over the world]. It’s really incredible how the NPF has become a major, major force at this point in directing research dollars.”

A Resource for Patients and Providers
The NPF, while geared toward improving the lives of people with psoriatic disease, can be a resource for dermatologists as well. The entire spectrum of health care providers can become a professional member of the NPF, including, nurses, nurse practitioners, physician assistants, pharmacists, medical students, residents, fellows, researchers and physicians in dermatology, rheumatology, primary care, and pediatrics.

Professional membership has its advantages. Dr Bagel promoted the NPF ready-to-use brochures that have been reviewed by medical professionals. These printed resources can be helpful for passing to patients to help them understand what psoriasis and PsA are and the various treatments available. They can also serve as an introduction to the wealth of resources that the NPF offers patients, getting patients away from some suspicious sources on the internet that might not be reputable or helpful or may waste their money, said Dr Bagel. Patients can also consult the Patient Navigation Center for questions and assistance regarding insurance appeals. Professional members can also receive a copy of Psoriasis and Psoriatic Arthritis Pocket Guide: Treatment Algorithms and Management Options for using on the move in the clinic or office, as well as the subscriptions to the  various NPF publications including the Monthly Advance Pro e-newsletter, NPF Advance, and the peer-reviewed and indexed Journal of Psoriasis and Psoriatic Arthritis.

Ongoing education is an important component for being involved in an organization like the NPF. The NPF mentor program can connect providers with a seasoned professional in caring for patients with psoriatic disease. The NPF also hosts a number of continuing medical education opportunities throughout the year, such as offering select Psound Bytes CME podcast episodes and Grand Rounds lectures on the latest therapies and research.

Dr Bagel encouraged professionals who want to enact great change for the psoriasis community to join the NPF President’s Council, a labor of his love and dedication to the organization. Members of the Council may also receive early access to exclusive NPF patient data, which can help support further research with the collection of real-world patient experiences with the diseases and therapies, as well as priority referrals from the Patient Navigation Center.

“The President’s Council also has national meetings at the American Academy of Dermatology, where you could meet almost all the pharmaceutical companies that are involved with psoriasis. If you’re interested in being a speaker, performing clinical trials, or serving on an advisory board for these industry companies, it is a great chance to meet them and share that you have a vested interest to psoriasis,” explained Dr Bagel.

The NPF is heavily involved in legislation at state and national levels. “The NPF is fighting to help keep step therapy out of the prescription portfolio,” said Dr Bagel. “The NPF has been very effective in changing some of the legislation in many states around the country to help people get access to their drugs, so we don’t have to spend this much time doing that and can focus more on helping our patients live their lives.”

Looking Forward
Dr Bagel continues to be optimistic that a cure for psoriasis is somewhere down the line. He cited the recent and emerging therapeutic advances, and the need to continually update the guidelines as new research is published.

“What I want to highlight is that in the last 10 years, there have been more advancements in the treatment of psoriasis than any other disease except for HIV/AIDS. This means more advances than debilitating diseases such as multiple sclerosis, Alzheimer’s disease, and cancer, and widespread ones such as diabetes.”

“With the newer therapies, two out of three people get clear and stay clear with four shots a year. This means that for these patients, for 361 days of the year, they don’t have to think about their psoriasis,” said Dr Bagel. “How about the other third, and how about making one shot making it go away? Can we do that? How are we going to figure it out the next step? We’re getting closer to a cure—it may not happen next year, but I can see it happening, especially with the support of the NPF.”