Tell your story and see the difference it makes

At NPF, we often get the question, “Does my voice really matter?” The answer is without a doubt, yes. Your voice absolutely makes a difference for patient advocacy! Your voice can be shared effectively in so many ways – for example, through a call, email or text to your lawmaker. Your voice can also be heard through sharing your story with us or with the media. 

Another way to share your voice is in person, at an NPF advocacy day in your state. While meeting with lawmakers may be intimidating and requires taking the time, it is extremely effective. Take the case of a recent advocacy day in Wisconsin. 

On a cold Wednesday in March of 2019, nearly 50 advocates came together from over 10 organizations to learn about step therapy (or “fail first”) legislation that will make it easier to get the right medication at the right time. They learned about the issue and how to make the case to their legislator and share their story…and off they went. Advocates met with legislators or their staff at more than 19 Senate and 25 Assembly offices – telling their story about how they had been impacted by step therapy practices. After sharing their story, they either thanked legislators who had already signed on or asked for support.

How do we know advocates’ voices make a difference? One measure is support from lawmakers. In Wisconsin, two important legislators who were previously on the fence decided to support the step therapy bill after hearing their constituents’ stories. Without the voices of patient advocates, this would not have happened. 

Whether you meet with your legislator at the state capitol or where you live, in your district, your voice is important. You are the person that they are accountable to – the voter. The issues you face matter. You don’t have to be an expert in advocacy, because you tell your story best. 

One woman's experience

Samantha is someone living with psoriatic disease who participated in our Wisconsin advocacy day. She had never met with her lawmakers before, or even shared her story – but when she learned about the effort to push for patient protections in step therapy, she decided it was time to get involved. She committed to the day, learning how to share her story with her legislator and how to ask for help when she wasn’t sure about something. She also practiced thanking her state senator for supporting the bill. 

Samantha was thanked by her senator for taking the time to come in and share her story. The senator’s staff told her they could help draft her testimony if she was willing to share her story in a committee hearing. Samantha blushed and agreed. She said after her meetings, “I didn’t know how powerful my story and my voice could be. I’m really glad I made the decision to get involved and be here today.” 

Legislators hear every day from staff and people who work in statehouses – but they don’t hear as often from constituents impacted by the issues. Taking the time to attend an advocacy day, meeting with your lawmaker and telling them about the issues you face, is gold. It’s what they remember, and what helps convince them to support and work for the issues that matter to our community. 

At NPF, we work hard to organize and support advocacy days throughout the country. I alone, we’ve been a part of advocacy days in California, Georgia, Kansas, Maine, Oklahoma, Oregon, Virginia, Washington and Wisconsin.

So please – whether it’s through an email, or hopefully by attending an advocacy day near you – elevate your voice with the help of the NPF advocacy team. We’ll get you connected with our work in your area and make sure that you have the training and tools you need to be effective. Contact [email protected] to learn more and don’t forget to sign up to receive important advocacy email updates. You can also follow us on Twitter: @NPF and #NPFadvocacy.

Editor’s note: NPF Advocacy Coordinator Julia Boles contributed to this story.

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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