When patient advocates speak, politicians listen

The clanging of plates and laughter poured out of the Washington, D.C., conference room where 32 advocates from around the nation broke bread the night before our annual Capitol Hill Day. Patient advocates came from all corners of the country including Alaska, California, Florida and Massachusetts to meet with their elected officials and discuss issues impacting patients living with psoriatic disease.

This year patient advocates focused their asks on:

  1. Supporting federal step therapy reform through bipartisan legislation to create guardrails around step therapy insurance protocols.
  2. Supporting NPF’s request of $1 million in federal funding for the Centers for Disease Control and Prevention to explore the connection between psoriasis and psoriatic arthritis and other chronic conditions.
  3. Renewing the Patient-Centered Outcomes Research Trust Fund. PCORI, a nonprofit research institute, is charged with studying the effectiveness of treatments and providing patients and doctors with the tools to choose the treatment that best manages their condition. NPF recently was a recipient of one of their grants, which helps to fund our LITE clinical trial

Volunteers worked late into the night taking selfies and posting on social media to promote our efforts and working among themselves to perfect their asks for meetings the next day.  

Sunshine and cherry trees were not the only warm welcome 

Advocates were welcomed the morning of April 1 to blooming cherry trees and warm sunshine. After a quick photo, the 10 groups of advocates dispersed and went into action. 

NPF staff and volunteers get ready for their day in Congress.

Our group included patients from Alaska and Washington state. Our day started in the Hart  Senate Office building, where we were eagerly greeted by Senate staffers who were excited to see a friendly face from their states. 

Washington state advocate Lisa Bayautet describes the energy in the building: “It was a joyful means to discuss serious health care issues impacting our community. Senators Patty Murray and Maria Cantwell's offices showed deep commitment in listening to our requests. Staffers were very inquisitive with their questions, which allowed us to further share the importance of the critical nature of our issues.” 

Thank yous in the tunnel

One of our last meetings was held underneath the Capitol in the House tunnels. This area is normally off-limits to visitors, unless you get special permission from a congressional office. Bayautet has built a strong a relationship with Rep. Jaime Herrera Beutler’s office, and our group was escorted to meet the representative outside the doors of the Appropriations Committee hearing room.  

Our group huddled in a dark hallway, everyone expressing the importance of our issues. “I thanked her personally,” Bayautet says about meeting Congresswoman Herrera Beutler. “The fact that the congresswoman serves on the Labor, Health and Human Services Subcommittee gives hope to achieving the CDC funding request we made. The CDC is the only health agency that studies across disease states and connects the dots between comorbidities.”  

After a long discussion on the importance of step therapy reform and research funding, we snapped a photo with Herrera Beutler. 

Accomplished and headed home

The day was a whirlwind, our feet were aching, but we felt that we had accomplished something. Like all attendees, we were able to put a face to issues that are impacting our community, making our collective voices heard on Capitol Hill. Our work in the building made a difference and our mission was further amplified by advocates from around the country who joined us through our virtual Capitol Hill Day
Stay up-to-date on advocacy

The actions taken during the national fly-in are all part of the many actions we must take to achieve our goal. We encourage you to stay engaged throughout the year by signing up for our emails. Share your story or learn about our current and upcoming activities. For real-time updates, follow us on Twitter via @NPF and #NPFadvocacy. Please visit our webpage for more information or contact Brittany Duffy-Goche at [email protected] or 503-546-8364 to discuss the many different ways you can get involved. 

Photo, top: Front row, Lisa Bayautet, Washington, and Tami Seretti, Pittsburgh. Back row, Brittany Duffy-Goche, NPF; Marc Boas, Alaska; Pete Redding, Nevada and Arizona

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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