“These were used 30 years ago, and we are talking about 21st century United States, not an underdeveloped country with no access to medication. They have high toxicity and limited benefits for patients with RA,” she says. “At some point, they were all we had, but today methotrexate is a first-line medication used for rheumatoid arthritis.”
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Dr. Shakoory was diagnosed with ankylosing spondylitis during her rheumatology fellowship and attends the fly-in because her experiences have given her first-hand knowledge of the challenges and barriers to providing and receiving care.
This year’s agenda also includes asking for dedicated, line-item research funding for RA from the Department of Defense. “It is the second leading cause of medical discharge from the military after battlefield trauma,” says Dr. Harvey.
Participants will also push for improved patient access to dual-energy X-ray absorptiometry (DXA), a bone density test. Medicare reimbursement for DXA has dropped 70% since 2007. This no longer covers the provider cost to administer the test and forces patients to seek scans at hospitals.
Further, attendees will discuss with legislators the unintended consequences of a billing change designed to reduce administrative burden. It calls for consolidating all evaluation and management services into a single billing code.
“Doctors who tend to see highly complex patients will see a decrease in their overall reimbursement, and doctors who see lower-level patients will see a bump in reimbursement,” says Dr. Harvey. “It will not recognize the contributions rheumatologists make in treating complex patients.”
Patient Input & Impact
At the event, longtime attendee Michael Taffe says personal stories matter, and everyone has a different role to play. Mr. Taffe is a rheumatology patient with a passion for helping others.
“I have learned that patients have a different impact on the members [of Congress] than the doctors do,” he says. “Once we understand the agenda of the doctors, … it’s my job to put a real face on what the doctors are talking about and asking for.”
For Nancy Ellis, MBA/MHA, an ARHP member and practice administrator at Piedmont Arthritis Clinic, Greenville, S.C., attending the fly-in in the past has helped her foster relationships with her representatives. “You’ve got a name when something is going down, instead of just sending something to an amorphous email box,” she says.
Attending for the first time can be nerve-wracking, but Mr. Taffe reminds people to be themselves. This is what Sydney Lau hopes to do this year, when she attends for the second time. The high school senior from California says she was really nervous last year, but is setting aside college applications to once again share her personal experience in living with JIA at the national level.