“Twenty or 30 years ago, children with chronic arthritis were often confined to wheelchairs, or were blind from the inflammation that came with the arthritis. Now we can get over 50 percent, maybe up to 70 percent, of kids in remission — so most people don’t even know the children have arthritis.”
That’s Dr. Randy Cron, director of the division of pediatric rheumatology at Children’s Hospital and head of the new Alabama Center for Childhood Arthritis and Rheumatic Disorders in Birmingham.
The American College of Rheumatology notes that rheumatic diseases are a major cause of disability in childhood, but that proper diagnosis and early aggressive intervention can minimize both short- and long-term morbidity of these conditions.
However, there is a severe shortage of pediatric rheumatologists in the United States, according to a recent report by the Health Resources and Services Administration of the U.S. Department of Health and Human Services. With an estimated 6,000 children living with arthritis in the state, the Alabama chapter of the Arthritis Foundation led a campaign to raise $1 million to establish an endowed chair in pediatric rheumatology at the University of Alabama at Birmingham and to partner with Children’s Hospital of Alabama to establish a dedicated clinic facility. Cron and his colleague Dr. Timothy Beukelman, both recruited from Children’s Hospital of Philadelphia, started seeing patients at the clinic in mid-September.
Alabama previously was one of 13 states identified in the HRSA report as lacking the services of a practicing pediatric rheumatologist. Fewer than 200 certified pediatric rheumatologists practice in this country.
“Since juvenile rheumatoid arthritis is one of the most common chronic illnesses among children, the need for pediatric rheumatologists is vital,” said Jan Bell, president of the Arthritis Foundation Alabama Chapter.
Chronic arthritis is the most common disease treated by pediatric rheumatologists, Cron says, followed by lupus and then dermatomyositis. Vasculitis and scleroderma are also fairly common.
“Each disease is relatively uncommon, but together as a whole, they’re more than enough to keep us busy,” Cron said. In fact, the clinic is already booked up well in advance. “Bear with us for a while,” he said. “It’s going to take time for us to get our numbers up to be able to serve everyone’s needs.” The clinic plans to hire three more physicians over the next three to four years.
In the meantime, Cron is asking doctors to be aware that anti-nuclear antibody (ANA) testing is not helpful in the diagnosis of childhood arthritis. “Depending on the lab, 10 to 30 percent of the healthy population will have a positive ANA,” he said. “It doesn’t mean that child needs to see us. The vast majority of the time, those kids are perfectly fine.” While ANA testing is helpful in diagnosing lupus, he says, that disease is rare under the age of 10.
Another blood test that is not helpful in diagnosing childhood arthritis, Cron says, is the rheumatoid factor. “Less than 4 percent of kids who have chronic arthritis have that as a positive blood test — and even if they have arthritis, it may not show up positive.”
Cron recommends physicians call the Arthritis Clinic for advice before ordering these tests and making referrals to the clinic. That will ensure that the limited number of slots at the clinic go to the most appropriate referrals.
If a child does have one of these diseases, a pediatric rheumatologist can offer specialized treatment.
“When you don’t have a pediatric rheumatologist,” Cron said, “a lot of children end up being treated by an adult rheumatologist, or by a pediatric sub-specialist where it overlaps — such as nephrologists who often take care of children with lupus because it also affects their kidneys.”
Yet many of these diseases, he says, are genetically and phenotypically different in kids than in adults. “A lot of the time, kids with arthritis don’t even hurt at all.” Children, he says, also tolerate medicines better than adults. “Their enzyme metabolism is better, so you can give higher doses of certain medicines.”
Pediatric rheumatologists, he says, tend to be more aggressive with their therapy than other pediatric subspecialties. “Our diseases tend to be autoimmune diseases, so in general we use medicine that suppresses the immune system. Outside of a few specialties, like oncology, people get worried about using these kinds of medicines.”
Cron is hopeful that the shortage of pediatric rheumatologists will start to ease in the future. This is a relatively young subspecialty, he explains, dating back only to the 1950s in this country. “It’s kind of a Catch-22,” he said. “If you don’t have any pediatric rheumatologists to be role models at your medical school, it’s not something you’d even consider.” However, he says, about 15 are expected to graduate per year in the next few years. “I think the newer numbers are starting to be larger than the number of people who are leaving the profession.”
By bringing a pediatric rheumatology presence to Children’s and through the hospital’s affiliation with UAB, Cron hopes to be part of this process, establishing a fellowship program to train people who will likely stay in the region.