Advocating for a Positive Patient Outcomes

Did you know that insurance companies can deny treatment that your doctor deems appropriate until you’ve tried and failed other medications (known as step therapy), without a good reason as to why? Did you know that some states don’t have any board-certified pediatric rheumatologists to diagnosis and manage the care of children with juvenile psoriatic arthritis?

Did you know that psoriatic arthritis patients and caregivers help change these outcomes by supporting the National Psoriasis Foundation (NPF) advocacy efforts, both at the federal and state level? It’s true! And it’s so easy to make a positive difference.

Share Your story

“Not only can sharing one’s experience with psoriatic disease help people connect with one another, it is an incredibly powerful way to help lawmakers understand exactly how psoriatic disease impacts people’s lives,” said Randy Beranek, president and CEO, NPF. “Patient advocates have the opportunity to educate lawmakers and help them form their decisions based on real-life scenarios. Patient advocate stories could influence decisions made about critical policies that impact one’s ability to access care and treatments, as well as the importance of funding research for a cure.”

The most important thing I’ve learned over the years with regard to advocacy is that no two stories are the same. Sure, we all share similar experiences. But I have yet to meet a mom who passed on her psoriatic disease genes to her son – unbeknownst to her – only to have her son be diagnosed before she was and have his disease manifest more severely than hers. (If you’re reading this and this sounds like you, please leave a message. I’d love to meet you! Heck, even if this doesn’t sound like you, leave a message because I love connecting with all psoriatic disease patients.)

With no two stories being the same, I can also attest that you are the best person to tell your story. Sure, my mom, husband, best friend, and even my son who also has psoriasis and psoriatic arthritis can tell you lots of anecdotes about how we deal with the symptoms, medications, insurance companies, health care professionals and so much more. But honestly, it’s just not the same as hearing directly from the source.

Voices multiplied

One patient’s story can and does impact the people listening. With advocacy, it’s the policymakers on Capitol Hill and the state legislatures who are listening – or should be! You’ve heard that there is strength in numbers. Just imagine the impact you can have when you’re part of a larger group of patients, all telling their individual stories, all asking for more resources and legislation that will benefit everyone in the psoriatic disease community.

Advocacy in action

In 2011, my family attending NPF’s Capitol Hill Day in Washington D.C. We knew absolutely nothing about advocacy, and to be honest, we were quite nervous to tell my son’s diagnosis story and how psoriatic disease impacts him and our family. Along with another Michigan advocate, we visited our senators and representatives and got positive feedback and support from our policymakers.

A few years later, NPF sent me back to Capitol Hill with a psoriasis researcher from the University of Michigan. We asked for more funding for psoriatic disease research, and again, we received support from our legislators.

In 2016, my son represented the almost 300,000 children nationwide with juvenile arthritis. There was a special Congressional briefing with patients that expressed how important it is to create opportunities to help engage medical students to pursue pediatric rheumatology. Along with two other speakers, my son told his story about how he was diagnosed and that some of his friends with juvenile arthritis have to travel more than four hours each way to get care from a board-certified pediatric rheumatologist. The NPF and the Arthritis Foundation teamed up for this very informative briefing. The room was packed, and attendees asked lots of great questions to better understand the challenges with juvenile arthritis.

This past April, I attended Capitol Hill again with other NPF advocates. I got the honor to share my day with two superstar volunteers. Like other patients who attended this big event, our stories were as different as can be, but no less important than anyone else’s. Recognizing that and working together as team, we were able to gain support for research funding for the CDC, step-therapy reform, and reauthorization for a key patient-centered research organization from Michigan and Minnesota senators and representatives.

You can advocate too!

You don’t have to be in Washington D.C. to advocate for better psoriatic disease treatments and outcomes. You don’t have to be on Capitol Hill to tell your story. You can do advocacy at the state level by visiting your state capital. Actually, you don’t even need to leave your house to be an advocate. You can send emails to your U.S. senators and representatives, or call them on issues that matter to you. Check out more ways to get involved by visiting the NPF’s advocacy webpage.