Editor’s note: NPF advocates are gathering today in Washington, D.C., to urge all members of Congress to support legislation that improves the health of Americans with psoriatic disease.
We need your support to amplify the voices of those in D.C. Participate at home by completing this action alert. The more we share this message with lawmakers, the more they will listen.
Below is a story written by one of our volunteers who attended the 2018 Capitol Hill Day. The post was originally published last year.
My first Capitol Hill Day was in 2011. I was an inexperienced 23-year-old, brand new to the psoriasis community. I remember the uncertainty of what that day would bring. It was not only my first time doing advocacy work in Washington, D.C., it was also my first NPF National Volunteer Conference and the first time I would meet individuals living with my disease.
It kind of felt like a first date. You know that feeling you get when you are nervous, excited and a little scared at the same time? That’s exactly how I felt when I woke up that morning. I was never big into politics until NPF introduced me to it. Initially I was a bit nervous to get to know legislation. I thought it was too complicated and over my head.
Prior to that day, I had asked myself many questions: Would I do well? Was I qualified? Do I have what it takes? Initially, my relationship with legislation was very casual — sometimes I was into it, sometimes not, but there was no permanent pressure to make it an active part of my life. Before NPF, I didn’t know much about the workings of advocacy in politics and the power patients have to make a difference.
Since my first date with advocacy seven years ago, politics now has an important place in my life. I have spoken to congressmen and senators on behalf of constituents in Alabama, Georgia and South Carolina on various issues concerning those of us living with psoriasis and other chronic diseases. Most recently I attended the 2018 Capitol Hill Day to advocate for changes to step therapy, a current practice in health care that needs to be adjusted to better fit the needs of people living with chronic illnesses such as psoriasis. Unlike seven years ago, this time around I wasn’t nervous and I wasn’t intimidated.
NPF does an amazing job preparing volunteers on how to converse with politicians. We did an online workshop before the event, as well as training the day before our meetings. These trainings addressed questions or concerns volunteers may have, and we also did role-playing, where one person acted as the volunteer and the other acted as the congressman or congresswoman.
If you are considering attending a Capitol Hill Day, here are some words of advice for a successful day:
I went to Capitol Hill Day in 2013, 2015 and 2018. Every time I’ve gone, the weather has been completely different than the time before. The first year it was nice and sunny, two years later it was a snowstorm, and this year it was gloomy and rainy. Bring clothes that are suitable for any type of weather. Be sure to bring a raincoat or umbrella as well. Also, walking during this event is inevitable, so make sure you wear comfortable shoes with lots of cushion.
Get to know the people who represent you
NPF does a great job of giving volunteers materials to prepare for the day, including a packet that outlines the legislation you are pushing for, a profile on your senators and representatives, and a map of Capitol Hill. Study this information. It’s easy to read and doing so will make you feel less stressed.
Build a relationship
If this is your first meeting, it should not be your last. An important aspect of having legislation passed in your favor is to build a relationship with your congressman or congresswoman. You can do this by reaching out via email, social media, snail mail or phone calls a few times a year.
Keep it short and sweet
Sometimes you’ll only have the opportunity to speak with a staff person rather than your congressman. Most individuals you meet with will have only 10 to20 minutes to chat, so be sure to be concise when you share your story.
Leave it behind
Your story and the ask are most important. If there are any pertinent details you forgot to mention or if you ran out of time, NPF will provide a folder that contains all the details about the current legislation. You can leave it with the staff person.
Photo: NPF Vice President of Government Relations & Advocacy Patrick Stone, volunteer advocate Alisha Bridges, Sen. Thom Tillis (R-N.C.), volunteer advocate Brian Lehrschall
Join our advocacy efforts
Alisha Bridges, a woman of many talents, recently performed standup comedy at the HealtheVoices conference. She discussed growing up with psoriasis and the struggles of living with a chronic illness and called it "Chronic Comedy."
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.