Pendaar Pooyan was diagnosed with juvenile idiopathic arthritis (JIA) in elementary school. He learned to ask for what he needed: use of a computer in class because of wrist pain and a locker that didn’t require him to bend down so far. And he learned to talk about his disease. This helped make participating for the first time in the ACR’s Advocates for Arthritis fly-in last year a natural fit for the teen, now a high school junior.
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Mr. Pooyan will join roughly 100 other rheumatology patients, providers and administrators from around the country in Washington, D.C., Sept. 23–25, 2018, for the annual fall event, which brings them together with their legislators and their staff to advocate on behalf of rheumatology.
“I have never shied away from telling teachers, students and administrators that I have JIA, and I have never stigmatized it,” says Mr. Pooyan. “I tackle it head on, and I think that’s one thing that has helped me in advocating for kids with JIA.”
Event Background & Key Issues
Each year, the three-day event begins in conjunction with the ACR’s Advocacy 101 course, an immersive crash course in effective healthcare advocacy for ACR and ARHP members. Participants are briefed on the specific issues at the heart of the ACR’s efforts, and two days are dedicated to small group meetings with lawmakers from attendees’ home regions.
“The primary goal is to keep our membership and patients energized and focused on the importance of advocacy because, without that, we can’t accomplish anything,” says Will Harvey, MD, MSc, FACR, ACR Board member and rheumatologist at Tufts Medical Center, Boston.
Participants will be brought up to speed on four issues this fall. The first, step therapy, limits patient access to appropriate treatments by requiring a treatment to fail for them before they can try another. The ACR supports the bipartisan Restoring the Patient’s Voice Act (H.R. 2077) to ensure a process for granting privately insured patients exemptions.
When she was a practicing rheumatologist, step therapy was a profound issue for patients of Bita Shakoory, MD. Dr. Shakoory, Mr. Pooyan’s mother, says some rheumatoid arthritis (RA) patients have been denied coverage for methotrexate until other treatments failed to work for them, such as gold salts and penicillamine.