Advocacy 101

| Steve Bieler

A big part of what the National Psoriasis Foundation does is advocate for better treatment and lower costs for people with psoriasis and psoriatic arthritis. We work with state and federal legislators to help them understand the issues and find solutions.

Sure, we’re professionals. But you don’t have to be a professional advocate to be an effective champion.

Take Sarah Truman. Truman has had psoriasis since she was 18. Two shots of Depo-Provera, a hormonal contraceptive birth control drug, caused a reaction that left her 90 percent covered with plaque psoriasis. Psoriatic arthritis followed at 28. Truman is now 39 and also suffers from some comorbidities.

In 2012, Truman, who was new to Portland, Oregon, attended a More Than Skin Deep event. “That’s when I finally learned about the whole body effect of psoriasis,” she recalled. “This is also when I first learned about NPF. I signed up for something, and then I received an email asking for volunteers.”

It’s not like Truman has tons of free time. She’s the mother of three sons. She works as a payroll manager for a large global company. But something about this request struck a chord.

“I responded, not knowing that NPF’s headquarters was here in Portland,” she said. “I assumed I would help out at an NPF walk. But when I found out that there was a Portland division being put together, and that there were opportunities for advocacy, I was very excited. I asked what I could do for the organization in terms of advocacy and told them my story.”

How it all works

The biggest event on the advocacy calendar is the Washington, D.C., Fly-in. Once a year, NPF sends a delegation of staff members, researchers and volunteers to the District of Columbia to meet with members of Congress. The delegation enlists the help of these lawmakers to pass legislation that will improve treatment for psoriatic disease and to secure funding for more research. Collectively, these goals are what negotiators call “the ask.”

“It seems scary,” Truman said. “But first, you’re visiting representatives from your state, so you already have something in common. And second, all you have to do is follow the format.” NPF preps everyone with talking points and assigns them a place in the presentation. Truman explained, “What usually happens is, NPF opens. Then I get about 10 minutes to tell my story. Then we hear from a researcher, then NPF closes with the ask. You’re part of a team.”

Her most important advice when meeting with government officials: “Be very calm. Don’t be nervous. Tell your story, but find a way to relate to them and make it real.”

Truman has testified at state legislature committee hearings, which she said can be intimidating. “You go to the microphone and everyone on the committee is up there with microphones, looking down,” she described . “It makes you nervous, but people on both sides of the aisle want to hear from constituents. People on both sides of the aisle want this problem to be addressed. They only disagree on how.”

Before a hearing, Truman types up her testimony and attaches photos of herself and some Explanation of Benefits (EOB) statements. The EOB explains how much of your health provider’s bill was paid by your health insurance. Truman submits copies of this package for everyone on the committee. Then she gets up and tells her story, while keeping it within the time limit.

There is always more time to  share your story in media interviews. Truman has given interviews to media outlets “all over the place,” most recently to NPR’s Marketplace.

Her advice for an interview: “Highlight the extreme things. Don’t be embarrassed. Don’t be shy. Make it relatable so it hits home. Connect with that person interviewing you. Maybe they have a loved one who died from cancer. Bring a show-and-tell, such as a basket of meds or at least a picture.”

Truman also recommends showing interviewers an EOB (with how much her provider pays blacked out) so they can see  how much treatments actually cost.

Speaking up for those who can’t

“When I was first diagnosed, I felt all alone,” Truman said. “I have had some very hard years going through my illness, the worst years of my life. If I can do anything to help someone, to keep from feeling the way I did, then my experiences are worth it for me.

“I am taking my experiences and trying to turn them into something good, trying to make them mean something. There are others in those dark places I was at that can’t speak, but I can speak for them.”

Learn more about advocacy and how you can help.

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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