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One Member’s Experience with Advocacy

Richard “Rick” Seiden followed the usual trajectory for one of our volunteers: first he was diagnosed, then he discovered NPF, and finally he read something about NPF that clicked with him. What’s not so usual is how long he’s been volunteering with us.

“I became involved in 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.”

In 2003, Seiden (who has also been diagnosed with psoriatic arthritis) saw a notice in the Advance that NPF was looking for people to serve on the board of directors. “I’m a lawyer, so as you might expect, my primary passion is for advocacy,” he says. He is now retired, but in his career he represented health care providers (hospitals, nursing homes and physicians), which gave him a background in health care law, to go with his personal experience as a patient.

Seiden applied for the board position and was selected. Seventeen years later, he’s still a board member, having served as both vice chair and then chair. He now serves as secretary.

“My professional background and being an NPF board member have provided me with great tools to be a patient advocate,” he says. “However, it’s not necessary for any other patient advocate to have a similar background. Everyone with psoriasis or psoriatic arthritis has a unique viewpoint and personal story to tell. There is no one better than you to describe your own experience as someone living with psoriatic disease.”

Capitol Hill Day

On April 21, 2020, we held our 16th-annual Capitol Hill Day, the biggest advocacy event on our calendar. “In the earliest days of my advocacy, in 2004, it seemed to me that our primary goal was to raise awareness of psoriatic disease in Congress,” Seiden says.

Much has changed since then, and not just the precautions we had to take this year due to COVID-19. For one thing, legislative staffers in recent years seem to be more familiar with psoriatic disease, which Seiden credits to increased advertising by drug manufacturers and NPF advocacy. For another, today we have “the ask.”

“NPF will seek legislative approval of particular bills or positions – that’s the ask,” he explains. “Since on Capitol Hill Day we typically work in groups, I usually encourage another patient advocate to describe their disease experience in as much detail as is comfortable. I then follow up with the ask.”

Over the years, Seiden has learned a few things about making the ask:

  1. Approach advocacy with reasonable expectations.
  2. As persuasive as we all may be, there will always be someone who opposes what we are seeking.
  3. That’s OK. “If we don’t ask, we don’t get,” says Seiden. Sometimes it takes multiple asks to get the results we want.

A Different Kind of Capitol Hill Day

Rick has been “making the ask” since the earliest Capitol Hill Day in 2004. But this year, instead of actually traveling to Washington, D.C., for a day of in-person meetings, everything was converted to a teleconference format because of COVID-19. The medium had changed, but the basics had not.

“It was clear that the staffers were quite accustomed to the new teleconference format, and they were timely, given that their schedules are packed with a series of such meetings,” he says. Although the teleconference meetings were generally shorter than the in-person meetings of the past, Seiden was satisfied with his experiences that day, saying the meetings “flowed well” and calling the Hill staffers “engaged.” And he noted that the advocacy teams included COVID-19 in their conversations, reminding staffers of the serious impact of the pandemic on people with chronic, autoimmune conditions.

“The staffers went out of their way to say something in response to each speaker, which does not necessarily happen during in-person meetings,” he says. “Of course, because we could not see the staffer, we could not really gauge their facial or body reactions, if any, to what we were saying. But I think that the overall impact of our advocacy was effective, and we got a pretty good impression as to how the staffer or their boss was leaning on our issues.”

Since our virtual Capitol Hill Day, two Senators and five Representatives have been added as cosponsors to the Safe Step Act. Additionally, one of our asks regarding a special enrollment period for healthcare.gov was included in the House’s next COVID-19 relief legislation.

Add Your Voice to the Voices of Our Community

Advocacy is critical for raising public awareness of psoriatic disease and leveraging our resources to obtain additional research funding and support for policies that improve access to care.

Most importantly, advocacy is “impactful, personally gratifying and empowering,” says Seiden.

“My favorite advocacy moment was when I made a presentation on the comorbidities of psoriatic disease to a meeting among senior members of five of the National Institutes of Health (NIH),” he recalls. The NIH has 27 institutes, which are organized by body systems or disease groups.

“This presentation was an effort to encourage cooperation and engagement among the institutes, in light of the seriousness of these comorbidities – for example, heart disease, Type 2 diabetes and hypertension. It was exactly the right audience for this discussion. I greatly appreciated the interactive dialogue that we started,” says Seiden.

You can join us in our advocacy work. We will find the role that’s best for you and provide all the training you’ll need. “Remember, we have a constitutional right to express our views to our elected representatives,” says Seiden. “The legislative aides or analysts whom we meet in the U.S. Capitol and in state capitols welcome the opportunity to learn more about the disease and its impacts.”

 

Richard Seiden, J.D., currently serves on the NPF board of directors. He received the NPF Lifetime Achievement Award in 2016. He served a three-year term as a patient advocate on the Advisory Council to the National Institute of Arthritis, Musculoskeletal and Skin Diseases. He resides in Los Angeles.

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