For over 50 years, the National Psoriasis Foundation (NPF) has ensured that the patient voice is the driving force behind every task we undertake. Nowhere is this more present than in our advocacy work. While your daily consumption of political news may cause you dismay, you should take comfort in the fact that not so quietly, work is actually getting done in Washington, D.C., and in our state legislatures. The NPF advocacy team and our army of patient, doctor and researcher advocates are behind that work.
Would it surprise you to know that in the past six months, NPF advocates have been the momentum and impetus behind the introduction of a piece of legislation in the U.S. Senate? The Safe Step Act (S. 2546) was introduced by Sens. Lisa Murkowski, R-Alaska, and Doug Jones, D-Ala., and to date has gained over a dozen co-sponsors from both sides of the aisle. And if bipartisan health care legislation gaining steam in a highly partisan environment shocks you, it’s going to floor you to hear that it was introduced, in part, because an NPF advocate named Marc Boas flew to D.C. last spring to share his psoriasis story with his senator!
Advocacy, like many things, is a numbers game. NPF advocates engage in hundreds of meetings with elected officials and legislators every year. Every one of those meetings is meaningful in some way and offers various degrees of outcomes, but Boas’ story stands out as the reason we continue to insist that the patient voice is the best tool we have in our legislative toolbox.
There’s more than one way to get involved
Boas was able to tell his story and have the impact he did because he agreed to participate in our annual Capitol Hill Day fly-in. The fly-in is hosted by NPF and brings advocates, practicing physicians and leaders in psoriatic disease research to D.C. to share their experiences with legislators and one another. This year over 50 advocates will divide into teams and spend an entire day “pounding the marble” in our nation’s capital. If you can’t come to D.C., don’t worry – you can still participate. Keep an eye on NPF’s Facebook page early in mid March for an invitation to join our virtual lobby day so you can have your voice heard from the comfort of your home.
Coming to D.C. or participating virtually isn’t the only opportunity our advocacy efforts at NPF provide. Would it again surprise you to know that this year, NPF has actively led or actively participated in the passage of eight pieces of legislation at the state and local levels regarding access to health care? At the center of those campaigns was, you guessed it, the voice of our advocates. In 2020 we will be conducting state lobby days in several states, including Oregon, California, Arizona, Maryland, Florida and Illinois.
I know what you are thinking. You live in Idaho and don’t see your state on our list here or at steptherapy.com where we post our target states for legislation. Do not let that deter you! Reach out through [email protected] and sign up for our advocacy alerts. If you have a story and a passion for advocacy, we will provide you with the knowledge and resources to help improve health care access in your state.
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.