Each year, passionate volunteers gather in Washington, D.C., for the Arthritis Foundation’s Advocacy Summit to influence Congress and raise awareness of the impact of arthritis. Kids and teens are welcome, too, and each age group has its version of the adults’ activities.
In sessions led by the Arthritis Foundation JA staff and volunteers, kids from pre-K through 12th grade get to connect with each other, while learning how to advocate for themselves and take action. Activities include playing games, creating materials to present to congressional offices, talking with health care experts and learning how to speak to politicians.
Above all, kids and teens get to meet with state and federal lawmakers to talk about the devastating effects of arthritis and the issues most important to them; such as, lack of funding for arthritis research, the shortage of pediatric rheumatologists and the burden of costly medications. Children in pre-K to eighth grade join their parents for visits to Capitol Hill, while teens ninth grade and up form their own advocacy groups to voice their concerns.
Advocacy Summit 2017
This year, discussions about new health care reforms made the summit more emotionally charged than ever. More than 400 volunteers from across the nation gathered to discuss the potential effects of plans to repeal and replace the Affordable Care Act and its replacement. Attendees evaluated the pros and cons of the new bill as they prepared for their meetings with Members of Congress: a whopping 247 in total, approximately half of which were attended by kid and teen advocates!
During the meetings, lawmakers were asked to prioritize patient-centered policies in new healthcare legislation. These included making access to treatments easier and more affordable, backing funding for arthritis research and joining the Congressional Arthritis Caucus – an organization that studies the latest information about arthritis and its damaging effects on the population and economy.
Ruby Rollins, an 18-year-old from Albertville, Alabama and Young Adult Arthritis Ambassador, was diagnosed with juvenile idiopathic arthritis at age 14. She traveled alone for the first time to tell legislators how expensive medications and lack of pediatric rheumatologists in her state negatively affect her and her family.
Sixteen-year-old Teen Ambassador Marcus Shipp feels the same way. “Being an ambassador is an honor that I’m grateful to have,” says Shipp, who was diagnosed with JIA at age 5. In addition to raising awareness about kids and arthritis, he says meeting other teens at the summit who can relate to what he’s going through has served as a main motivator for becoming an ambassador.
As legislators continue to debate new health care legislation, it’s more important than ever to share your story and make your voice heard. Join the Advocate program today, and check back here for dates and information on the 2018 Advocacy Summit. For any questions you have about the summit, please contact Laura Keivel at 202-202-887-2913 or e-mail her at firstname.lastname@example.org.