I wrote about high-priced drugs for years. Then my toddler needed one.

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When a salmon-colored rash flared on my 3-year-old son’s tummy one afternoon in August, I shrugged it off. The next time I asked Evan to lift up his shirt to take a photo, it was gone. When he stopped sleeping through the night, I thought it was a dreadful new developmental phase. But then on a Saturday, he stopped walking and spiked a 104-degree fever. A nurse gave me clear directions: “Get in your car, and start driving to the ER.”

After days in the hospital, the doctors had ruled out a long list of infections, as well as scary conditions like leukemia. That left them circling around a rare type of childhood arthritis called systemic onset juvenile idiopathic arthritis, or sJIA, in which the innate immune system, the body’s first line of defense against pathogens, goes haywire. Young children are tormented by daily spiking fevers, a fleeting rash, and arthritis. Some develop a life-threatening immune activation syndrome. Untreated, destructive joint damage can occur. We were in shock.

But the doctors mentioned a drug that they’d probably want to try — anakinra, a biologic drug that blocks a key prong of the immune system and quells inflammation. Like most rare disease drugs, anakinra (also known by the trade name Kineret) was obscure, but I’m a health and science reporter and I’d heard of it. In 2020, I interviewed a pediatric rheumatologist, Randy Cron at the University of Alabama at Birmingham, who wanted to test whether anakinra could help people with severe covid-19.





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