Failing to game the system
Yet a few seconds of thought would have made me realize that, for just one year, I should have paid the higher premiums for the deluxe Aetna plan and gotten both a good network and out-of-network coverage to cover all options. I had failed to game the system — to switch insurance just in time for, and just long enough for, expensive treatment — despite years of teaching about such behavior.
A few weeks after I signed on for the HMO, the Cushing’s diagnosis was confirmed. I needed the surgery.
Here’s where the best-laid plans can go awry.
My primary-care doctor was initially enthusiastic about the neurosurgeon my endocrinologist had recommended. But after speaking with a pituitary expert, my primary-care doctor changed his view: That surgeon was not known for Cushing’s surgery, and it is experience in the specific procedure that really matters.
I began to worry I had made a bad insurance choice.
When my fears made it hard for me to focus on finding a doctor, my husband found the Pituitary Network Association, which e-mailed to say that “only 20-25 truly experienced neurosurgeons routinely do these surgeries successfully.” The New York neurosurgeon my endocrinologists had recommended was not on the list. The only neurosurgeon in the city who was on the list took no insurance.
At this point, my endocrinologist referred me to Bruce, another New York neurosurgeon whom she knew was very experienced with Cushing’s surgery. And that was how I ended up on the phone with his assistant, thinking how stupid I’d been.
I felt overwhelmed. Should I pay tens of thousands of dollars to use an experienced doctor not in the Aetna network? Or take my chances with a doctor who was in the network but without the same Cushing’s experience?
I was living out an extreme version of a topic I had written about extensively: cost-sharing. Many U.S. health economists have advocated greater cost-sharing — out-of-pocket payments — so that patients will have more “skin in the game” and therefore pressure providers to keep costs under control. The idea is to make health care more like a regular market, in which people buy more and better stuff only if it’s worth the cost to them. But living through cost-sharing is miserable.
Who, when sick and scared, would be equipped to make wrenching decisions that interweave financial, technical, health and emotional threads? I had many advantages compared with most people: My condition was deteriorating slowly. Many friends and family members were physicians who could help me evaluate my condition and potential surgeons. And we had the money. Yet I was unsure what to do.
I met with the in-network neurosurgeon my endocrinologist had originally recommended and asked how many Cushing’s surgeries he had done. Offended, he answered evasively. I left feeling worried and disheartened.
A few days later, my father, a neurologist, called. “Couldn’t a surgeon outside New York be covered?” he said. “You know more than me about these things, but that seems reasonable.”
I had not even thought about investigating that. Fear and regret were paralyzing me. I responded defensively, “The Web site to find in-network doctors is based on where you live.” But I immediately called Aetna, whose rep told me that I was eligible to use surgeons anywhere in the country if they were in-network.
By now, many sources had given me the names of experienced Cushing’s surgeons throughout the country. I tried several, but none were in-network. Then I tried a name I’d been given in Boston: Brooke Swearingen. He was there!
Not quite believing it, I checked by phone that he and his fine hospital were in-network — and scheduled to stay in-network. I could have my surgery done by an experienced, brand-name surgeon in a brand-name hospital, and the insurer would cover it. And that’s what happened.
In the end, I didn’t have to face the terrible choice. Despite my lapses, my plan choice had worked. Today, I have no signs of Cushing’s and my health is vastly improved. I’m still with Aetna’s HMO, and the deluxe plan is no longer an option at my work.
Yet the experience changed the health economist inside me. I learned how hard it is, particularly emotionally, to make effective choices. Whenever I hear, as I often do these days, that informed health-care consumers can fix our health-care system by shopping around, I remember my own paralysis, mistakes and inability to find the information I needed. While choice may be great, negotiating through it is daunting and it seems unlikely to remedy what ails our health-care system.
Remler is a health economist and professor at Baruch College School of Public Affairs in the City University of New York. This article is adapted from her e-book essay, “Impossible Choices: The Education of a Health Economist.”