NPF goes to Washington

| Steve Bieler

On Sunday, March 18, 24 volunteers from 16 states along with six doctors and scientists arrived in Washington, D.C., to prepare for our annual trip to Congress. Our dual mission: to persuade our elected representatives to devote more funding to psoriatic disease research and to support step therapy reform.

We spent Monday acclimating ourselves to the D.C. area, where it was unexpectedly warm and dry (the weather reversed itself the following day) and getting ready for Tuesday, Capitol Hill Day. Our prep included social-media training and a Monday-evening dinner workshop on how to be an effective advocate (and how not to be).

In addition, that morning a group of researchers and NPF staff, along with National Youth Ambassador Michael Wood, met with scientists and directors representing the U.S. National Institutes of Health. The purpose of the meeting was to discuss NPF’s role in driving efforts toward a cure for psoriatic disease, updating NIH on our portfolio of research grants – with a recent example of where our research dollars are going – and giving NIH a patient’s perspective.

Early Tuesday morning, March 20, we left our Alexandria hotel and headed for D.C. Rain, cold and fierce traffic couldn’t stop us. That day we marched through five enormous office buildings on the perimeter of the U.S. Capitol, on our way to visiting 32 senators and 26 representatives. 

It was a frantically busy day in the Capitol, but that’s probably just a normal day in D.C. We shared the halls with other organizations from around the country who were hosting their own fly-ins. We never knew if we’d be meeting with our senator or representative, with their staff, or both, if we’d be meeting in the office or out in the hall, or even if we’d be sitting down or standing up. 

However, our reception everywhere was the same: respect. It doesn’t matter what political party your senator or representative belongs to. When constituents show up, politicians listen. Their staff listen. They make the time in their schedules to hear you. They all ask questions. It may take years to know what seeds our advocates planted that day, but we know we made an impact.

In the wake of the first Capitol Hill Day in 2004, our director of advocacy at that time said, “We will certainly plan to make this an annual event.” Fourteen years later, we’re still proudly bringing people from our community to Washington and giving them the platform to tell their story to lawmakers.

(Editor’s note: In future posts, we’ll go behind the scenes at Capitol Hill Day 2018, reveal the secrets to being an advocate for the psoriatic disease community, and hear from some of the volunteers who attended.)

 


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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