Our volunteers go to Congress and make their case

| Steve Bieler
On Tuesday, March 20, 2018, a group of National Psoriasis Foundation volunteers visited Congress on behalf of Americans with psoriatic disease. We met with our home-state senators and representatives, told them how this disease affects the lives of everyone in our community, and asked for two things: 
  1. We asked each senator to be a leader on step therapy reform and to introduce a step therapy reform bill similar to a bill in the House (H.R. 2077, Restoring the Patient’s Voice Act). We asked members of the House to co-sponsor H.R. 2077.
  2. We asked members of the Senate and House to provide the Centers for Disease Control and Prevention $1 million for research into comorbidities of psoriatic disease in fiscal year 2019. 
What follows is the story of what it’s like to go to Washington, D.C., and sit down with your elected representatives. Spoiler alert: You don’t always get to meet them. You don’t always get to sit down. But you are politely received everywhere and listened to always.
 
Judy Pollack and Brian Janssen were making their first appearance at our Capitol Hill Day. Under the watchful eye of NPF advocacy coordinator Julia Boles, they started their morning at the Hart Senate Office Building, nine stories of glass windows that let in floods of light even on the grayest day. The building was crowded with the people who work there and the people who, like us, had come to deliver a message or ask for help. If Pollack and Janssen were nervous about joining this throng and meeting their senators, they didn’t show it.
 
Pollack, a retired high school teacher from South Haven, Michigan, has had psoriasis for 34 years. “I’ve been prescribed almost every therapy, from topicals to phototherapy to systemics to biologics,” she says. “My son also has this condition and my hope is that a cure can be found at least in his lifetime.” She’s a former resident of Chicago and a vocal member of NPF’s Central Advocacy Action Network. She’d like to raise the public’s awareness of psoriasis and increase their acceptance on behalf of “those of us who would love to be able to go out in public uncovered.”
 
Janssen, who works for a large health care organization, is a longtime NPF donor who heard about our advocacy efforts through our emails. He has psoriasis and psoriatic arthritis. He’s been successfully treating his psoriatic disease with the same biologic for 14 years, but he’s been wary of changing employers and finding himself stuck with a health insurance plan that might make him change from his current biologic to another that may or may not work as well for him. 

Time to meet and greet

Sen. Debbie Stabenow (D-Michigan) was hosting a “Coffee with Debbie” event that morning. The large common room had a pot of coffee, stacks of mugs, no chairs and swarms of volunteer advocates like us. Stabenow’s staff kept everyone moving. We were efficiently sorted into a huddle with a legislative assistant who works on health care policy for the senator. 
 
Conversations with politicians and their aides start themselves. “Where are you from?” our legislative assistant asked. Pollack spoke about moving to Michigan four years ago from Chicago. Janssen is from Wisconsin, not Michigan, but the states are neighbors and that was close enough.
 
With the talk flowing, Pollack got down to business. “Are you familiar with psoriasis?” she asked. Our staffer was up-front about not knowing much about psoriatic disease. We gave him a brief explanation. Then Boles explained step therapy and Pollack told him how step therapy had affected her. Stabenow’s staffer took notes and asked questions. He seemed particularly interested in step therapy reform at the state level. 

Janssen talked about his best friend, who changed jobs and was forced by his new health care plan to return to a drug he’d used years before. “Do I upset the apple cart,” Janssen asked, “switch careers, go to another company and their possibly less generous plan, or do I stay and not take that chance? If you lose your drug, and then if you finally get it back, can you return to where you were?”

Then we met Sen. Stabenow, who greeted us warmly. Pollack and Janssen presented their talking points. Stabenow told us that one of her family members has psoriasis. Boles concluded with our two asks.
 
We posed for a group photo with the senator, and then Stabenow was on to the next group that had come for “Coffee with Debbie.” We were out the door and on to our next meeting.

Advocacy never rests

Our day continued in much the same way, with a break for lunch in the building’s cafeteria. A legislative aide to Sen. Gary Peters (D-Michigan) told us about her best friend from high school, who struggled with psoriasis. Sen. Peters joined us – we were standing in a hallway inside his office – and we had the geography conversation. We asked if he was familiar with psoriatic disease and he also shared that he has a family connection to psoriasis.
 
Sen. Tammy Baldwin (D-Wisconsin) was committed elsewhere, and her office was so crowded that we couldn’t get inside, so we met in the hallway with an aide who was also a registered nurse. She immediately grasped the concept of step therapy.
 
We didn’t get to sit down until our fourth stop, at the office of Sen. Ron Johnson (R-Wisconsin), where we met with a well-organized aide who sat us down at a conference table, quietly asked questions and attentively made notes. 
 
Everyone we met that day was a good listener. They can’t make promises, but they want to hear what you have to say. If you’re wondering if you’d be a good advocate, think of it this way: You already are, just by being you. 
 
The greatest impact you can make on your elected officials is by meeting them and telling them your story. You don’t have to travel to Washington – you can make your voice heard in your own state by connecting with your elected officials via email or social media. Join our volunteer advocacy team today. And check back to read more stories from Capitol Hill Day 2018.
Photo: Brian Jannsen, NPF Advocacy Coordinator Julia Boles, Judy Pollack, NPF Writer Steve Bieler

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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