A report from the Government Accounting Office (GAO) found that primary-care and specialty-care physicians are less likely to accept children insured by Medicaid and the Children’s Health Insurance Program, or CHIP – two federal programs for low-income families – than they are to accept privately insured children. This, coupled with a severe shortage of pediatric rheumatologists in the U.S., means that many children with arthritis may have a hard time getting appropriate care.

The GAO report showed that more than 75 percent of primary-care and specialty-care physicians in the U.S. who responded to the survey are enrolled in these public insurance programs and serve children. While 79 percent of those said they would accept privately insured patients as new patients, only 47 percent responded that they would accept Medicaid or CHIP patients as new patients.

The government report also indicated that physicians have much more difficulty referring Medicaid and CHIP-enrolled children to specialists than they do privately insured children. According to the specialists who responded to the survey, this is because they are underpaid by Medicaid and CHIP and often have to wait a long time to receive payment for their services. Plus, they said they don’t want to deal with the hassle of the paperwork and billing requirements that come with Medicaid and CHIP patients.

“The bigger picture beyond Medicaid and CHIP is that the rate of reimbursement is far lower than that for Medicare, and there is no [financial] incentive [for specialists] to work harder to see more patients,” says Michael Henrickson, MD, a pediatric rheumatologist at Cincinnati Children’s Hospital.

According to a 2007 report from the Health Resources and Services Administration, or HRSA, an agency within the U.S. Health and Human Services, as many as one-third of pediatric rheumatology patients are insured through Medicaid.

But the problem for children with arthritis – low income or otherwise – goes deeper than insurance status. Approximately 294,000 children in the U.S. have arthritis or another rheumatologic condition, according to a 2007 study from the Centers for Disease Control and Prevention. But the HRSA report estimates that there are fewer than 200 certified pediatric rheumatologists practicing in the country. It estimates that at least 337 pediatric rheumatologists are needed to meet patient care needs – a 75 percent increase over current numbers.

The HRSA report found that on average, children travel 57 miles to reach the nearest specialist and, because more than 10 states have no or few practicing pediatric rheumatologists, children are often seen by rheumatologists who are not trained in pediatric care. Furthermore, the majority of pediatric rheumatologists who practice in the U.S. are concentrated in academic settings, where they teach and do research in addition to seeing patients.

Experts say children with arthritis should be diagnosed and treated differently than adults, and that pediatric rheumatologists are the best-trained doctors to offer care for juvenile arthritis. There are many differences between children and adults with arthritis, including presenting symptoms, disease progress and response to medications. Also, tests that are used to help diagnose arthritis in adults – such as testing for rheumatoid factor and anti-nuclear antibodies, or ANA – are less useful in children. The correct diagnosis and timely medical interventions – taking into account a child’s normal growth and development – can minimize the short- and long-term symptoms and disability associated with these conditions.

“The shortage is a training issue. We need to get adult rheumatology trainees into training programs for children,” Dr. Henrickson says.

According to Michael Miller, MD, a pediatric rheumatologist at Children’s Memorial Hospital in Chicago, Ill., more pediatric rheumatologists are needed to educate medical students and primary-care physicians to recognize juvenile arthritis and related conditions early enough so that intervention can make a difference.

The shortage of pediatric rheumatologists also has a domino effect on research. “The shortage of pediatric rheumatologists means, practically speaking, that there is less time to do research that will lead to improvements in care for children in the future,” says Dr. Miller.