By Consumers for Quality Care, on March 8, 2023
Carolyn Johnson, a health and science reporter for The Washington Post, thought she knew a thing or two about how to navigate the U.S. health care system. And then her 3-year-old son got sick. What happened next took Ms. Johnson and her family through an ordeal that’s all too common for people with rare diseases, like her son’s.
As Johnson wrote later for the Post, it started when her son Evan was diagnosed with systemic onset juvenile idiopathic arthritis (sJIA), a rare condition in young children in which the innate immune system malfunctions. The condition causes a multitude of painful symptoms, some of which can be life-threatening.
As Evan’s condition worsened, his doctors wanted to prescribe a drug called anakinra, believing it to be, in their best medical judgement, the most effective treatment for young Evan. But the insurance company denied coverage for the drug, requiring instead that Evan start with cheaper medications before progressing to more expensive ones.
This strategy, known as “step therapy,” is a tactic commonly used by insurance companies to save money on medications. But in Evan’s case, the cheaper medications had already been tried and found ineffective. They didn’t stop the debilitating fevers, they didn’t banish the pain from Evan’s little knees, they didn’t get the condition under control at all, which is why Evan’s doctors – the medical professionals who know him best – wanted to put Evan on anakinra.
The Johnsons and their medical team appealed, but the insurance company upheld the denial.
They appealed again, for a second time, and were denied yet again.
All the while, Ms. Johnson was spending hours on the phone with her insurance company, fighting the denials. Thankfully, during this time, she was able to get Evan a free three-week supply of anakinra with the help her son’s doctors and a specialty pharmacy. When Evan finally took the drug, his symptoms improved dramatically, just as his doctors thought they would. He could stand again, he could walk again, he could run again, he was smiling again.
Still, Evan’s doctors put in place a backup plan, anticipating the final coverage denial. This plan resulted eventually in Evan getting coverage for a different even more expensive drug, despite the fact that according to Ms. Johnson, the insurance company avoided covering that one as well for another two months.
As she related in her piece in the Post, when insurance companies insist on prior authorization for vital drugs for patients like Evan, it delays care, puts a strain on families, and drives doctors and nurses “absolutely crazy.” It also disadvantages working-class families, who typically don’t have the time and expertise needed to go toe to toe with multibillion dollar insurance companies. If someone like Carolyn Johnson, a health journalist who frequently writes about these issues, had this much trouble advocating for son, then everyday consumers hardly stand a chance. That’s why CQC urges lawmakers and industry leaders to work toward solutions and streamline the prior authorization process to help consumers gain access to much-needed medicines.