Access to health care has sparked nationwide debates, but no matter where you fall on the political spectrum, sharing your voice is a key component to effective legislative change. The National Psoriasis Foundation wants patient voices at the forefront. You don’t have to make a debut in Hollywood to impact your community, either. Advocacy starts right at home.
We want to tell lawmakers what life with psoriasis is like. If our elected officials understood the struggles patients face, they’d be more willing to support policies that help us conquer treatment barriers as well as support a budget that includes psoriasis research (we want a cure, after all!).
The problem is, not everyone understands the impact of psoriasis. People have often told me, “It’s just a skin disease, put some lotion on it” or “Stop eating XYZ.” However, that’s not my experience with psoriasis at all. For me, psoriasis is painfully invasive and detrimental to my well-being.
Here are three easy steps make a difference in your community as an advocate for people with psoriatic disease. Remember, your commitment doesn’t have to be extreme to be impactful.
1) Talk about it
For many, it takes a lot of courage to open up about psoriasis, but your experiences are meaningful. When you talk to your friends, neighbors or coworkers, they’re better able to understand you and have more compassion for the millions of Americans who suffer from psoriasis. Sharing your story always matters.
2) Write about it
Put your story on paper. The first time I wrote about having psoriasis, I thought no one would ever read it. But I posted it online, and was able to connect with people in a new way. I now do the same with my elected officials: I write to them. Although elected officials seem far away and untouchable, the fact is that they’re very accessible! Elected officials are just that – elected by constituents like you, with the goal of promoting social good.
Now, I use social media to tweet and tag my representatives. They engage and comment on posts more than you might imagine. When I don’t know what to say, our Advocacy Action Networks provide sample tweets and emails that you can copy/paste to help share our message.
3) Act on it
You don’t have to act alone. NPF has lots of ways to connect with others right in your area. We host cycling and fitness events, game nights and pizza mixers. Not only is there a benefit to meeting others with psoriasis, community events are a powerful forum to learn more about overcoming barriers to treatment. For example, in 2018, NPF surveyed patients with psoriatic disease about barriers to accessing treatment, and found that 34 percent have experienced step therapy.
Tackling these problems in a group and trading ideas is an important facet of advocacy. You have something to teach others, and you never know what you might learn, too!
Your story is valuable, and you don’t have to be “qualified” to be a patient advocate. There are quick and easy ways to make a difference.
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.