A diverse coalition goes to bat for everyone with psoriatic disease

| Howard Chang

Being involved with the National Psoriasis Foundation comes naturally to me. Having had severe psoriasis for almost 40 years, I know firsthand the challenges of living with it daily. I want to do anything that helps find a cure for psoriasis or mitigates the impact somehow. So, when NPF hosts an event in my own backyard, I try my best to at least attend, if not volunteer.

I live about 25 minutes from the California state capitol in Sacramento. When I learned about NPF’s first California Advocacy Day a few years back, I wanted to join. But the thought of speaking to legislators at the seat of power of the most populous state in the Union intimidated me. 

Today, I have a few state advocacy days and Capitol Hill Day in Washington, D.C., under my belt. I smile when I think back on my first visits to the state Assembly or state Senate offices, when I felt so nervous I could hardly walk straight. I know my mission: to share my psoriasis story as it relates to particular bills and issues impacting health care legislation.

First we practice

I appreciate how well the NPF advocacy staff helps run these Lobby Days. The week before this year's advocacy summit, a webinar takes advocates through all the necessary material, including logistics for the day and information on legislation. The morning of Advocacy Day, April 16, we met for more extensive training with our fellow patient and physician advocates from the Arthritis Foundation and the California Rheumatology Alliance.

My wife, Lori, and I needed to drop our kids at school that the morning, so we missed the teen panel at the morning session. We were there, however, when the staff from NPF and the other two groups took the 70 or so advocates through the two “asks,” or requests. 

The first ask was for legislators to support Senate Bill 1021, “Affordable Prescription Drug Coverage.” This bill protects prescription drug users by renewing a provision of a former bill that capped the monthly cost of a single prescription medication at $250.

The second ask was for legislators to support Assembly Bill 2863, “Pharmacy Benefit Manager Clawback.” This bill curtails prescription overpayments, known as “clawbacks,” making sure patients only pay the cost of a medication (even if that cost is less than the copay).

My group was composed of a mom and her teenage son from the Arthritis Foundation, myself, my wife, and another NPF member from the San Francisco Bay Area. Working together with volunteers from other organizations and geographical regions brings a diversity of voices and experiences to the meetings. At lunch, our group discussed our meeting strategy and schedule. 

Then we act

Meeting my state Assemblywoman became the highlight of the day for me. This meeting was scheduled at the last minute, so I did not carry great expectations into it. Surprisingly, Assemblywoman Cecilia Aguiar-Curry did not send a staff member to meet with us as is typical of these meetings. Instead, she met with us herself in her office and even carried the discussion. 

As a temporary member of the Committee on Health, Aguiar-Curry took a learner’s attitude toward the difficult issues that health care presents. She vowed to “pull an all-nighter” to get to all of the 35 bills that would be presented the next day in the committee. I valued how she asked us questions and listened intently to our concerns about both bills. She even bonded with the teen from the Arthritis Foundation, Shane Cox, over the coin collection she had on display in an office bookcase. 

Aguiar-Curry encouraged us to follow the progress of the bills and contact her office to remind her of our concerns. We left the meeting amazed at the connection we had made from showing up and telling our story to a dedicated and passionate legislator. 

Get involved

When we elevate our voices together, we can make a difference, from state capitals to our nation’s capital. You don’t even have to travel – you can make your voice heard in your own state by connecting with your elected officials via email or social media. Join our volunteer advocacy team today. 

Photo: Jenn Cox, Shane Cox, Cecilia Aguiar-Curry, Howard Chang, Melissa Strong, Lori Chang

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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