One woman speaks up for patients – and finds that people actually listen

| Jody Quinn

Editor's note: Jody Quinn spoke with NPF about her life as a patient and volunteer. Below are highlights from her conversation, as told to Angela Kwan, editor of Psoriasis Advance.

Doctors thought it was tennis elbow or tendonitis. It took more than 10 years before I was diagnosed with psoriatic arthritis. I went to my dermatologist and asked why my fingernail kept falling off. It had been happening for a few years. He told me I needed to see a rheumatologist.

In the beginning, I didn’t know anyone who had psoriatic arthritis and I wanted to connect with others. I read as much as I could. Then I started hearing about biologics. You want to know other people’s opinion about the treatments — I guess that’s what everybody wants.

I kept looking for support groups and NPF kept coming up. I volunteered at an NPF Walk about five years ago. I got to know the staff, who asked if I’d be interested in attending Capitol Hill Day in 2016. At first, I didn’t think I could do it. I had never spoken to legislators before. I ended up going, and I got invited to a meet and greet with Senator Elizabeth Warren, and met with Representative Bill Keating, who has JFK’s old office. 

Being a part of the Eastern Advocacy Action Network has inspired me to look for different ways to create awareness. I’m trying to find new advocates in states where we don’t have any.

It took a couple months to set up a meeting with my state senator, Vinny deMacedo, in April 2017. He spent 45 minutes talking with me about my resolution, which NPF helped me put together. I outlined three things. First, I asked the State Senate to recognize August as Psoriasis Awareness Month. Second, I asked my state senator to sponsor me for the Citizens’ Legislative Seminar, a biannual event at the statehouse where citizens do mock hearings and learn how bills are passed. Third, I asked him to support step therapy reform.

Senator deMacedo said yes to everything I had requested. If he had said yes to just one thing, I would have been happy.

It’s funny how one thing snowballs. I contacted someone at the state and asked to light up Zakim Bridge (in Boston) blue and orange for one day in August to represent NPF. My sister and I went to take a photo of the bridge lit up. While walking around, I happened to see the mayor of Boston, Marty Walsh. I introduced myself and told him why I was in town. Through that chance encounter, the mayor’s office lit up City Hall for World Psoriasis Day.

I went to a lobby day at the statehouse with NPF. I testified in front of the joint Senate Finance Committee and did an interview with the local TV station. So, yeah, I guess I’m an advocate. 

I was affected by step therapy but I didn’t know it at the time. I’ve suffered joint damage to a couple fingers because the drug the insurance company wanted me to use didn’t work.

The pain from PsA became unbearable. I had to cut down to four days a week at work. My psoriasis responds well to everything. I always have it on my nails and head but have only minor flare-ups. I’m lucky that way. Not so much with my PsA; I’m one of those people whose treatment seems to stop working after six months.

On vacation with some girlfriends, I shared with them for the first time my advocacy stories. After we got home, I got all these emails saying how much they love hearing what I do and telling me about their family members who have psoriatic disease. My friends actually listened to me and seemed to appreciate what I had to say. That has motivated me the most. Sometimes the people closest to you don’t listen — they’re the hardest to impress.

Become a patient advocate

If you’re interested in advocacy and would like to join an Advocacy Action Network in your area, please contact Amy Prentice at aprentice@psoriasis.org to get involved.

 


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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