New Study Reveals JIA Treatment Disparities
A new study found treatment differences for newly diagnosed systemic juvenile idiopathic arthritis or JIA (formerly juvenile rheumatoid arthritis or JRA) patients.1 The researchers studied treatment variations in children hospitalized with new-onset JIA, finding that low-volume hospitals used more glucocorticoids (steroids like prednisone) compared to high-volume hospitals, which used more biologics for treatment.
The study was published in Arthritis Care & Research from the American College of Rheumatology.
Symptoms of systemic JIA
Systemic JIA makes up about 5 to 15 percent of all JIA cases, yet is responsible for a large part of the joint damage, disability, and death of child patients.1 In addition to the joint symptoms, systemic JIA symptoms may include high fevers, pink rashes, enlargement of both the liver and spleen, swollen lymph nodes, and serositis (inflammation of serous tissues lining organs like the heart, lungs, and other organs). It is also associated with macrophage activation syndrome (an excessive activation of T cells), which can be deadly.
The researchers believe that doctors at high-volume hospitals have more experience and comfort with biologic medications than doctors at low-volume hospitals. They also may have easier access to biologics in their pharmacies.
Systemic JIA treatment needs more than steroids
Unfortunately, the science doesn’t support the use of only steroids for effective JIA treatment. Drug trials have shown that biologic medications targeting IL-1 and IL-6 have shown much better outcomes for the disease.1 Previously, steroids and methotrexate were well-used treatments, but they have been found to not be very effective against systemic JIA. Additionally, they can have significant negative side effects (like weight gain, cataracts, and osteoporosis), especially considering the youth of the patients.
The researchers also found that between 2008 and 2019, the overall use of biologics increased and methotrexate decreased for treating systemic JIA. However, the use of steroids remained high even with this shift in treatment.1
Effective JIA treatments weren’t available when I was a child
My personal history of JIA is reflected in this study as when I was a child, very few treatments were available (biologics were not an option until well into my 20s) and it was steroids that helped me feel better. Methotrexate became an RA treatment when I was a teenager, but I didn’t go on it because we feared the impact of the side effects. While steroids don’t act on the actual disease, they can very much help a patient feel better through less swelling and pain (and sometimes even relieving fatigue).
Similarly, even after I moved to biologic treatment, the first couple did not help me much. It was only when I tried a biologic that targets IL-6 that I had huge results with my CRP (c-reactive protein inflammation marker), lowering to the normal range for the first time. Never before, in forty years of disease, had I had a truly effective treatment working on my JIA.
Other treatment challenges with JIA
The comparison of low-volume hospitals to high-volume perfectly equates with my experience growing up in a rural area. We had to travel far to a city for seeing doctors who had more JIA experience. My local rheumatologist was great, but he had seen few JIA patients.
Getting the right care in rural areas
I can understand where this difference still persists now and have compared stories with other JIA patients of a similar age who had better treatment at city facilities. I can’t say this made the difference between my condition and theirs, but I think it likely contributed to my joint damage and disability, along with the lack of effective treatments for a significant part of my life with JIA.
Sadly, other treatment challenges still persist for JIA, ranging from a lack of rheumatologists trained in this subset to a lack of FDA-approved treatments for children. To me, this is unconscionable because often JIA can be severe and debilitating. Getting the correct aggressive treatment early can make a huge difference in the lives and futures of these children. I only hope studies like this will continue to put the pressure on for swifter and better treatment for children diagnosed with JIA.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?