This week, the Arthritis Foundation, alongside the American College of Rheumatology (ACR) and the National Psoriasis Foundation (NPF), advocated for the arthritis community on Capitol Hill by raising awareness concerning the shortage of pediatric rheumatologists across the country and the difficulties families face in obtaining treatment for juvenile arthritis.
Acting as moderator of the presentation, AF CEO Ann Palmer initiated the meeting with Hill staffers by focusing on the lack of pediatric rheumatologists in the United States; she also offered an anecdote from the JA Conference in July where children expressed their desires to plead to members of Congress for their assistance obtaining improved access to doctors in order to feel less pain and to help find a cure for JA.
The presentation included testimonials from AF Advocate Joy Ross and Andy Moy, Youth Advocate for the National Psoriasis Foundation, both of whom live with juvenile arthritis as well as rheumatologists, Dr. Will Harvey and Dr. Michael Henrickson, who both spoke on the importance of accessibility to pediatric rheumatologists.
Ross brought the house down with her impassioned testimonial about arthritis and how the disease continues to affect her family. Ross illustrated her point by removing her prosthetic eye in front of the audience; recounting the devastating revelation of her daughter’s diagnosis with the same disease and her daughter’s expressed anxiety about the possibility of going blind as well.
The message of the presentation was clear: Readily available access to a pediatric rheumatologist is critical to obtaining timely diagnosis and necessary care for the prevention of worsening conditions of the disease which can lead to blindness, permanent disability and the eventual loss of life.
In an effort to ensure that all children with JA have access to a pediatric rheumatologist is to enact HR 1859, the Ensuring Children’s Access to Specialty Care Act, which would help place pediatric subspecialists in rural and undeserved areas.
Unsure who represents your district? Check out this website for assistance obtaining that information. Take a stand and urge your representative to become a Champion of Yes by voting in favor for HR 1859.
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