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Leading the Way in Rheumatology Care & Research

The Arthritis Foundation recently hosted events to highlight challenges in access to care and game-changing research for arthritis patients.  

By Jill Tyrer | Dec. 20, 2024

Scientists, health care professionals, patients, researchers, fellows, supporters and many others joined us in Washington, D.C., for several events we hosted during the American College of Rheumatology’s Convergence in November. Arthritis Foundation President and CEO Steve Taylor and the advocacy team hosted a brunch for the Arthritis Healthcare Forum. The science team joined him for presentations of three Foundation-funded clinical trials. And many of our current and past fellows, researchers, donors and other friends and supporters joined us for an evening reception.

Rheumatology Workforce Discussion

The shortage of rheumatologists and allied health professionals was the focus of our Arthritis Healthcare Forum presentation. A panel of patients, parents and providers shared their personal experiences and insights with a packed audience at the brunch.

The number of rheumatologists in the U.S. is shrinking as the population of people with rheumatic conditions is growing, and that’s especially true of pediatric rheumatologists. Fewer physicians are choosing to specialize in the field, which can be more demanding than other specialties, partly because of the shortage.

Rheumatology care is especially hard to find in rural areas and other under-served communities — some states lack any pediatric rheumatologists. But as Heidi Barrett, parent of a child with arthritis, explained, getting timely diagnosis and care can be difficult even in metropolitan areas. Her home city, Seattle, has more pediatric rheumatologists than many places. But because they also care for patients in Alaska, Oregon, Idaho and beyond — who get priority care because they must travel long distances to receive it — local patients often wait months to get an appointment.

Such delays in diagnosis and treatment — whether due to long lead times before appointments, insurance barriers or lack of knowledge — lead to poorer outcomes for the patients.

The Arthritis Foundation is working to bridge that gap through its fellowship program and advocacy efforts, among other initiatives.

Complicating care, especially for children, is that autoimmune arthritis is often just one of many conditions they are dealing with, so they need an army of medical professionals, explained Patrick Campbell, also a parent of a child with juvenile arthritis. Even with his background in public health, learning to navigate various health systems, multiple appointments and insurance challenges can be a full-time job, he said. In just the first year of diagnosis, his child had around 150 appointments.

Dr. Ekemini Ogbu, a pediatric rheumatologist at Cincinnati Children’s Hospital Medical Center, discussed starting pediatric rheumatology programs at Johns Hopkins Medicine. In them, multiple disciplines coordinate so patients receive more holistic care — one way of addressing the need that Campbell pointed out.

Panelists talked about several potential solutions, such as introducing more students to rheumatology at an even earlier point in their education — perhaps even high school — and providing relief from burdensome student loans.

Dr. Andy Chan, senior vice president of research at Genentech, discussed the promise of artificial intelligence in rheumatology and medicine in general, from helping facilitate office operations to accelerating diagnosis and treatment. It’s already being used on a small scale, he pointed out; AI can take notes so the doctor can focus more fully and engage with the patient, improving communication.

Three Clinical Trials

The Arthritis Foundation hosted a packed room full of scientists and medical professionals from academia, industry and government to hear about cutting-edge clinical trials in osteoarthritis (OA) that the Foundation is funding. Lead investigators presented each of their three clinical trials aimed at preventing or delaying osteoarthritis.

Cale Jacobs, PhD, director of outcomes research at Mass General Brigham, explained the PIKASO (Preventing Injured Knees from Osteoarthritis Severity Outcomes) clinical trial. OA currently has no disease-modifying treatments available; typically, people manage their OA pain until they opt for joint replacement surgery.

PIKASO is a double-blind, placebo-controlled, randomized clinical trial testing whether metformin, commonly used to treat diabetes, can slow or prevent OA progression in people with major knee injuries. The trial is currently enrolling participants — those who are scheduled for surgery to repair an ACL tear that can be followed by the onset of early osteoarthritis. The multi-site trial will last for five years.
Steven Messier, PhD, professor and director of the J.B. Snow Biomechanics Lab at Wake Forest University, is well known for his research in exercise and weight loss for OA. He is now principal investigator of The Osteoarthritis Prevention Study (TOPS), looking at whether weight loss and exercise can also prevent OA in women at risk of developing it. This multi-site study is currently recruiting participants.
Elena Losina, PhD, presented the Knee Arthroplasty Activity Trial (KArAT). Co-director of Orthopedics and Arthritis Center for Outcomes Research at Brigham and Women’s Hospital, she is looking at physical activity levels after knee replacement surgery, one of the most common surgeries in the United States. Although physical activity can improve health and quality of life and reduce pain, most people who have a knee replacement do not become more active, even with less knee pain and more mobility. The multi-site KArAT study is looking at post-surgical results and ways to increase physical activity levels.

Two researchers working with Dr. Losina, Samantha Chin and Daniel Betensky, both presented posters at ACR Convergence. Chin’s focused on activity levels in people with advanced knee OA and Betensky’s compared the costs of bariatric surgery with weight-loss drugs like Ozempic for knee OA. Weight loss can ease knee OA.

The Arthritis Foundation wrapped up the weekend by hosting an evening reception for volunteers, past and current fellows, funded investigators, supporters and other Foundation friends. In addition to great networking opportunities, this event included remarks by Dr. Jason Kolfenbach, Fellowship Program Director at the University of Colorado, Denver, and by Dr. Julie Campbell, formerly a Foundation-funded Fellow and now the only full-time pediatric rheumatologist in Montana, on the impact that the Foundation’s funding of fellowship training has had for them.
 
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