Mixing politics and pizza

A chilly December morning was warmed with smiles and laughs as a group of volunteers from the Portland, Oregon and Vancouver, Washington metro areas met for food, friendly games – and a discussion about health care policy. The volunteers had come together for their monthly meetup at the Lucky Labrador pub in Portland, this time to focus on the upcoming 2019 legislative sessions in Oregon and Washington. 

Across the country, health care will be front and center for lawmakers. Many states are looking at how to expand access to care for patients, while tackling rising out-of-pocket costs. In Oregon and Washington, our top priorities will be passing step therapy reform and looking at innovative ways, like a copay only model, to ease the burden of high out-of-pocket costs. 

The group played a card game that had them match actions to words, while they learned how to turn their words into actions by becoming advocates.

Unique stories with a common struggle 

In 2018, the National Psoriasis Foundation surveyed patients with psoriatic disease about barriers to accessing treatment, including step therapy, and found that 34 percent have experienced step therapy. Step therapy requires a patient to try and fail on one or more medications before being granted coverage for the drug originally prescribed by their provider. 

One attendee, Kim Patton of Vancouver, is a longtime NPF volunteer who knows firsthand how step therapy can impact a patient’s quality of life. “For almost 10 years I tried and failed many drugs, including several different biologics,” Patton says. She then went on to discuss the struggle of having to start the whole step therapy process every time her psoriasis would return and a new treatment was necessary.

Her story was not unique. Others at the table discussed their frustration with having to try and fail multiple times before being granted coverage. In commercial health insurance plans, step therapy accounts for more than 73 percent of restrictions placed on specialty medication. Patients typically have to go through an average of 1.5 steps before being granted coverage for the treatment they need. 

“During my most frustrating period, I found my way to the NPF webpage and became active in helping myself and others living with psoriatic disease,” Patton explains. “I’m not a person who is normally comfortable speaking publicly, but the staff at NPF have been wonderful in coaching me in what we need to say and do to get things done, and that’s given me the courage to have a voice in future legislation. I’ve testified at the Washington state capital and attended several Capitol Hill Days. We need our voice to be even louder if we want to make these changes happen.”

Being a benchwarmer isn’t a bad thing 

At NPF, we are in the middle of our volunteer drive and are growing our bench of volunteers for 2019, which promises to be an exciting year for state advocacy. We need your voice to help drive our work and move the needle for better access to care. 

Patton says it best: “Whether you can only spare a few hours, a month or have more time and physical availability, there’s something you can do to help. It can often be done at home, on the phone or through emails, and you’ll have support every step of the way. And the sense of pride and achievement when that bill is passed, or you’ve been able to help encourage someone else who is struggling, is the best reward there is.”

Stay up-to-date on our advocacy work

Follow us on Twitter via @NPF and #NPFadvocacy. Visit our webpage for more information or contact Brittany Duffy-Goche at [email protected] or 503-546-8364 to discuss the many different ways you can get involved. Bonus: Learn all about the issues we'll tackle in the new year by joining our nationwide 2019 advocacy preview on Jan. 30.

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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