By E. William St. Clair, Ann M. Palmer and Randy Beranek For parents, there are few things more frightening than learning that your child has a serious, painful, debilitating illness. But for an increasing number of families across the country, the trauma of such a diagnosis is compounded by the reality that there are remarkably few physicians trained and knowledgeable enough to treat them. Unfortunately this is often the case in the field of juvenile arthritis, a far more common affliction than most realize.
In a nation that boasts some of the world’s most advanced medical technologies and experts, it’s difficult to fathom that hundreds of thousands of patients – children for that matter – simply cannot access the care they need. Yet, for those children suffering from juvenile arthritis, the reality of an alarming shortage of much-needed specialists leaves families struggling to find care, relief and answers. Juvenile arthritis, which can range from mild to life threatening, is actually an umbrella term used to describe the many autoimmune and inflammatory conditions or pediatric rheumatic diseases that can develop in children under the age of 16. Often difficult to diagnose and even more challenging to treat, it requires the skill and training of medical professionals who have specialized in the field. Yet despite the 300,000 diagnosed cases in the United States today, which account for 827,000 doctor visits and 83,000 emergency room visits each year, there are currently fewer than 350 board-certified, practicing pediatric rheumatologists in the United States. Most of these specialists are clustered in and around large cities. At least nine states do not have a single, board-certified, practicing pediatric rheumatologist to care for sick children. Certainly, the fear and anxiety that accompanies having a sick child is made exponentially worse when expert care is difficult to find and costly to access. Research has shown that our nation’s shortage of specialists means that only one-quarter of children with arthritis will be able to see a pediatric rheumatologist. More than half of pediatric arthritis patients have to travel 100 or more miles to see a pediatric rheumatologist, and for 65 percent of patients, the average wait time to see a pediatric rheumatologist is more than two weeks. It’s expensive, time consuming, and exhausting for parents who often miss work and other obligations to pursue care for their child.
All parents want the very best care for their children, and every child with juvenile arthritis deserves access to treatment that eases discomfort and lowers the chances of long-term disability. When children have access to pediatric rheumatologists, they have the ability to pursue novel therapies and clinical trials. Ensuring appropriate care helps young arthritis patients thrive while also controlling costs by helping to avoid costly complications.
Addressing the nation’s critical shortage of pediatric rheumatologists is long overdue and something that we can’t afford to delay any longer. Our aging workforce means that the average pediatric rheumatologist is in his or her fifties and approaching retirement age. In the absence of these trained specialists - who complete a three-year fellowship to specialize in pediatric rheumatology - the burden of care for this patient population falls on providers without the advanced training to address the unique care needs of children with juvenile arthritis.
Our policymakers have the timely opportunity to help build up the ranks of medical professionals who pursue pediatric rheumatology – as well as other much-needed subspecialties. The American College of Rheumatology, Arthritis Foundation, and National Psoriasis Foundation are calling on Congressional leaders to support H.R. 1859 - The Ensuring Children’s Access to Specialty Care Act, a bill introduced in the House of Representatives that would make pediatric rheumatologists eligible for the National Health Service Corps (NHSC). The NHSC provides scholarship and loan repayment to health care providers in exchange for service in rural and underserved areas. This bill would help bolster the ranks of this critical specialty to meet a growing demand for children’s arthritis care and further ensure children in areas with no pediatric rheumatologists have access to providers best suited to meet their needs. The gut-wrenching fear of discovering your child has a serious illness can be tempered slightly by the fact that medical professionals have the tools and knowledge to ease suffering and effectively manage his or her condition. It’s time we ensure there are sufficient medical specialists to help every child who needs it.
E. William St.Clair, M.D. is the president of the American College of Rheumatology. Ann M. Palmer is the president and CEO of the Arthritis Foundation. Randy Beranek is the president and CEO of the National Psoriasis Foundation.