Pediatric Rheumatologists Increasing in Number but Still Rare

Dr. Ferguson

States without dense population centers also suffer from the scarcity. Polly Ferguson, MD, associate professor of pediatrics and department director of pediatric rheumatology at the University of Iowa in Iowa City, practices in a state with roughly 3 million people, almost 23% of whom are under 18 years old, according to U.S. Census statistics. She is one of only a few pediatric rheumatologists in the state.

The American Academy of Pediatrics estimates that roughly one-fourth of children with rheumatic disease live 80 miles or more from the nearest pediatric rheumatologist. Travel to doctor appointments can be a daunting enterprise that encompasses lost school days for the ill child and work days for parents, plus the cost of reliable transportation and child care for siblings. “It’s a hardship on families,” notes Dr. Klein-Gitelman.

The scarcity takes a toll on those subspecialty doctors who are lone soldiers covering a vast geographic territory. Dr. Ferguson now has a pediatric rheumatologist partner at the hospital and clinic where they see patients, but there was a time when she was the only one in her state. She recalls always keeping her cell phone with her during a family vacation in the Arches National Park in Utah.

“I don’t know how many phone calls I got when I was out there and every time [my phone] would go off I would have to climb one of the arches because the reception was so poor,” chuckles Dr. Ferguson.

“If you’re by yourself it…doesn’t stop. It’s a continuous workload…” she says, noting that she held a previous post in Alabama where she worked solo. “No matter how hard you work, you can’t keep up with it. You have to learn to prioritize.”

Dr. Ferguson’s solution was to get creative with available resources. She combined forces with other physicians in her institution with shared interest who were willing to step in and handle more basic calls, like filling prescriptions. To better manage the high demand, she relied on the expertise of nurses to triage patients. “The people around you, when they are good, make it a lot, lot better,” says Dr. Ferguson.

Children without access to pediatric rheumatologists may instead see adult rheumatologists or other related subspecialists, says Dr. von Scheven. The statistics that most experts quote, she says, is that about 50% of children with rheumatic disease receive their care from a pediatric rheumatologist and the other 50% from an adult provider.