Families, physicians and patients gathered in Harrisburg, PA on March 28 to learn more about potential legislation that could affect access to care and meet with their legislators to enlist their help. They shared their stories with legislators and asked them to cosponsor the prior authorization bill and the copay cap bill. It was an impactful day of relationship building using personal stories to communicate the urgent need for support and passage of these bills.
If enacted, the prior authorization bill will standardize prior authorization protocols and streamline access to vital medications. The copay cap bill will limit the cost of a 30 day supply of any single prescription medication to no more than $150 a month. Both bills will significantly improve the ease and affordability of accessing essential treatment.
This year’s Pennsylvania Capitol Day saw a 46 percent increase in attendees. Three rheumatologists, Dr. Terence Starz, Dr. Alfred Denio and Dr. Paul Killian, shared real-life stories as examples of everyday problems they face helping families get prior authorization from their insurance companies and dealing with frustrations of high coinsurance.
Attendees created a one-sentence story that described the impact from access barriers. Here’s a sampling of one sentence stories from our Capitol Day event:
- “100% of my children are disabled by arthritis.” – A. Vago
- “My son’s copay is $500 a month with insurance.” – J. Jones
- “My child should not have to wait for treatment because of an insurance
company’s decision.”– T. Aquino
One of the special outcomes from Capitol Day was watching children develop their confidence and communication skills as Advocates. Abby Ferraro is a 7 year old Advocate from Lower Gwynedd who was diagnosed with juvenile arthritis when she was 20 months old. Abby participated in the Pennsylvania Capitol Day with her mom, Kerry. Earlier this year they attended our 2017 Advocacy Summit in Washington, D.C. Abby likes advocating because it makes her feel empowered.
“I’m lucky with my arthritis. A lot of kids have real bad juvenile arthritis,” said Abby. “I like being able to help them.”
“She’s normally pretty shy,” said Kerry about her daughter. “When we meet the lawmakers or their staff, she wants to do the talking. It’s given her more confidence. It’s so important that the lawmakers see the kids. Half of the people we met didn’t know that kids got arthritis. Putting a face to the disease, especially such a cute face, is important to get the message across.”
What is your one sentence story and how will you use it for the arthritis community? Join our advocacy program today and we’ll show you how to impact access to care for your family and friends.