Juvenile Arthritis Advocates

Young Advocates in Pennsylvania Speak Out

School is out, so now what do you do to engage your kids? On June 29, a number of parents took their families to Harrisburg, PA, to participate in the 2016 Pennsylvania Advocacy and Access Day. Some of the youth were already pros having attended previous advocacy days and our Advocacy Summit in Washington, DC. For others it was a first time experience.

Advocates gathered in Harrisburg to be briefed on three priority issues: prior authorization, high out-of-pocket costs, and biosimilar substitution. Seven youth attendees came with their parents and participated in the advocacy training and legislative visits.

Why do parents care about their families being part of advocacy efforts? Here are a few comments from parents who attended the event.

“It was awesome to watch legislation in action and to watch my girls advocate,” said Tory Aquino “Watching change happen is such a powerful thing and we are truly blessed to have the support and backing when it matters so much to the 11,500 children and over 3 million adults in Pennsylvania living with arthritis. And these bills apply to anyone who has to go through prior authorization or who pays high costs for their medication!”

“We truly appreciate the opportunity to engage our elected representatives on these key issues,” said Viktoria O’Donnell. ”We hope to help my daughter, Meghan, and all others who live with juvenile arthritis.”

“It was a great day for the Flood family,” said Amy Flood.       

Our visit to the Pennsylvania State Capitol was great, but the following day was even better. On June 30, the day after we visited with legislators, the Biosimilar Substitution Bill (SB 514) passed in the House with a 195 to 0 vote. We know our young Advocates made a difference!

If you’d like an advocacy experience for your child this summer, visit the advocacy booth and attend the advocacy sessions at the Juvenile Arthritis Conference in Phoenix on July 14-17 or in Philadelphia on August 11-14. Get all the details about the upcoming JA Conferences here.


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