A Mainstay of NPF’s Modern Advocacy Efforts

Richard “Rick” Seiden has psoriasis and psoriatic arthritis (PsA), along with other comorbidities of psoriatic disease. He has served on the National Psoriasis Foundation (NPF) board of directors at two different times, from 2002 to 2015 and from 2017 to the present, including stints as the chair and vice chair. “I became involved with NPF when I first picked up one of its brochures in my dermatologist’s office. That was around 1983,” says Seiden. “I had been diagnosed with psoriasis 10 years earlier. I immediately became a member and signed up for the NPF newsletter.”

As a lawyer who calls himself an “expert in the comorbidities of psoriasis,” Seiden was an obvious candidate to become a successful advocate. But he’s quick to point out that anyone – no matter what your background is – can experience great successes in advocacy.

Q: What can you remember about your earliest days of advocacy efforts with NPF?

Seiden: The focus of our earliest advocacy efforts was public and congressional awareness of psoriatic disease. In 2004, we had a comprehensive proposed bill that sought funding for a patient registry, a CDC [Centers for Disease Control and Prevention] study, and increased funding for NIH [National Institutes of Health]. Even though the bill did not pass, most of our objectives were met over time.

Q: Can you share a particular story or anecdote that really encapsulates your experiences as an advocate?

Because of my experience as an advocate, I frequently try to accompany newbies to the process, to help them to frame their personal message for maximum impact. One time, I went with a member to meet with their senator. It was obvious that we were not going to make any progress since the senator was so focused on the national deficit, even though we were asking for a $1 million grant to the CDC. Our member was not to be denied the opportunity to tell herstory, which was particularly compelling.

I was so proud that she had overcome her reluctance to speak, and the senator listened patiently and empathically.

Q: Being a lawyer probably helped you understand the value of speaking up for yourself and others, but do you think it’s necessary to have a certain set of skills or a certain professional background to be an effective advocate?

As lawyers, we are trained to be advocates for our clients. But it is not necessary to have legal training to speak up for yourself and your community. All you need to do is to develop and rehearse a short, impactful statement of how psoriasis has affected your life (or your loved ones), and the legislators and their staff will listen. It is important to focus on the most important elements that are relatable to the listener, given the short amount of time that you have to make your case.

Q: What is your proudest moment as an advocate?

I think my proudest moment as an advocate came when the Foundation organized a three hour session at the offices of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (at NIH), where we also invited representatives of four other NIH institutes: (a) Heart, Lung, and Blood, (b) Diabetes and Digestive and Kidney Diseases, (c) Allergy and Infectious Diseases, and (d) the National Cancer Institute. The NIH is organized around disease types or body parts, but our effort was to bring together and educate multiple institutes about the coexisting conditions [comorbidities] of psoriasis – arthritis, diabetes, hypertension, etc. It was our opportunity to discuss the comorbidities of psoriasis and psoriatic arthritis, and I could not imagine a more impactful audience for our efforts – people involved with grant-making across multiple disciplines.

Q: Why does advocacy matter?

Our objective as a Foundation is to improve the lives of those affected by psoriatic disease and to find a cure. Advocacy for funding for specific grants to CDC or other federal agencies enables us to leverage our limited resources to have greater amounts of money applied for research and development. In the recent past, we have had increasing success with advocacy at the state level regarding issues such as step therapy, limitations on copayments and deductibles, and so forth.

Q: How is a “win” defined when we’re talking about advocacy work?

The ultimate “win” is the adoption of legislation or an administrative ruling that benefits our patient population. However, one learns that advocacy is a cumulative process, you must make multiple efforts to accomplish your goals, and persistence pays off over time.

Bonus Round

Q: What is your favorite Capitol Hill Day memory?

My favorite Capitol Hill Day memory is from my first year. My state delegation was quite nervous about returning to visit with a legislative assistant (LA) who had been quite difficult the year before. Our outside advisor asked me to join her for a private meeting with the LA. I understood that her boss did not appreciate the advocacy efforts of single- disease groups, so my strategy was to describe the comorbidities of psoriasis and the cross-purposing of drugs that were originally approved for psoriasis but were effective in treating other immune-mediated diseases. We were given 10 minutes, but we took a half hour. I literally spelled out all of the relevant diseases and medications, and we turned around the LA and her boss.

Q: What message do you have for the NPF community?

Advocacy is an activity in which anyone can participate. There is nothing more empowering than speaking about your own condition to a receptive audience in an effort to change their minds and to support your efforts. As long as you have reasonable expectations and are willing to persevere, it can be a very rewarding experience. Among other things, it provides an opportunity for you to develop public speaking skills and develop self-confidence.

Photo by Jaime Green, Rick Seiden addresses the room at a 2019 Cure Symposium breakout session.