Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered. In early September, Aetna denied the request, requiring an additional test. Our doctors ordered the test and appealed.
In October, after another emergency room visit, daily spiking fevers, $2,000 of bloodwork and a growing feeling of despair about whether our son would ever be able to walk or play normally again, I received a letter from Aetna. It was a decision to “uphold the denial” to cover the drug, and it came from a team led by a urologist, a medical specialty that would not typically treat sJIA.Aetna required that Evan try 30 days on drugs such as naproxen or ibuprofen, or two weeks on a steroid first to see if those worked. This type of decision isn’t unusual — nearly all insurance companies use this process, called step therapy, and it’s meant to save health-care dollars. The idea is a logical one — to “step” up from inexpensive therapies to more expensive ones. It’s a guard rail to prevent unnecessary spending on drugs that cost more but may not offer much more benefit.
The painful irony was that we already had tried those medicines. A few days on ibuprofen and we were back in the ER. It failed to control Evan’s miserable fevers or assuage his knee pain. Steroids, which Evan was still taking, were only sort of helping.
This isn’t a unique story about American health care, a single high-priced drug or just one insurance company. It is a tale of routine aggravation, inconvenience, futility and fear, but fortunately, not tragedy. Our battle was hair-raising but typical.
What’s different is that I have more tools, more time and more knowledge about how the system works than the average health-care consumer.