Facing brain surgery, a health economist finds the health-care market hard to navigate

Cristina Martinez Byvik/For The Washington Post - A health economist learns the hard way that picking the right insurance plan isn’t easy at all.

“You should never have an HMO,” the neurosurgeon’s secretary told me on the phone, her voice filled with scorn. “You don’t have any out-of-network benefits. Dr. Bruce participates with no insurance plans. Only out-of-network benefits can be used.”

I felt sick — not because of the recently discovered benign tumor in my pituitary gland or the resulting excess cortisol in my body or the delicate neurosurgery required. Rather, I felt sick with embarrassment and a sense of professional failure.


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I am a health economist, a professor with a PhD from Harvard. I’m supposed to be an expert on health insurance and its complexities. How did I end up in such a bind?

I tried to recover my dignity and act like an expert: “How much does it cost if you pay out of pocket? $20,000?”

“For the surgeon. . . . But you have to pay for the hospital, too, even if the hospital is in-network. When you use an out-of-network surgeon, the whole thing counts as out-of-network,” she said.

How could I have forgotten that? I hung up with the depressing impression that having Bruce as my surgeon would cost me around $60,000 out of pocket.

Whether it is President Obama praising the Affordable Care Act or critics of “Obamacare” describing their ideal system, such words as “choice” and “competition” figure greatly. The idea is that informed consumers shopping for health care will lower cost and improve quality.

Yet my difficulties show how hard it is — even for someone who has studied health-care and insurance issues — to navigate the health-care marketplace, particularly when you have a serious medical condition.

My problems began in November 2006, during open enrollment for insurance, when one can switch plans. I had switched from a point-of-service (POS) plan, where you can pick your own doctors and just pay more if they are out of the carrier’s network, to a health maintenance organization (HMO), in which only in-network doctors and hospitals are covered. HMOs are often cheaper: Switching saved me about $500 a month. The downside is that if you go outside the network, you must pay 100 percent of the doctor and hospital cost. But my main motivation for the switch was the ease of getting specialists and treatments approved with the HMO as compared with my POS plan.

When I switched plans, I had known that I might have a pituitary tumor, which can cause a condition called Cushing’s disease, and that neurosurgery was the recommended treatment. Opting for a POS and its out-of-network benefits to give me a free choice of surgeon would have been best. But I had overlooked that. Why? Ironically, years of careful research on insurance options, particularly for my husband, were to blame.

Several years earlier, my husband, Howard, who was born with only one kidney, had a lot of health problems, including a heart murmur that had required heart valve surgery. For years he had been on my plan, but when I switched jobs in 2004 we had to redo things, and both his employer and mine offered the exact same options. Two of them had out-of-network benefits, a feature I had always insisted on. Aetna had a great reputation, but its out-of-network coverage was expensive: The employee contribution for one person would cost $3,700 per year. The contribution for the equivalent POS plan offered by another insurer, HIP, was $2,450 per year, but its reputation among some friends and colleagues at my old job was not as good as Aetna’s. After consulting other colleagues who were using HIP, I decided to give it a try anyway. For Howard, we chose the deluxe Aetna plan with out-of-network benefits.

Prices began to rise

Only a few months after that, Howard’s employer announced that people in that plan would have to immediately start paying $1,800 more per year and suggested that he switch to Aetna’s HMO, which would cost about $1,500 a year, $4,000 a year less than the plan we had chosen for him just months before.

To me, that seemed like a bad idea. “The HMO would limit your choice if something bad and unexpected happened,” I told Howard. “What if you got a brain tumor or some rare eye condition or something that we can’t predict?” I favored staying with the Aetna plan and paying the higher premium for the remainder of the year. He could switch to my cheaper plan during the next open enrollment, allowing him to keep access to out-of-network doctors.

Howard, though, wanted Aetna’s HMO. We could save money. And Aetna’s network contained all the best cardiac surgeons and hospitals, names we knew from earlier heart valve surgery. His Aetna experiences had all been easy and in-network — and therefore would have been equally easy in its HMO. Howard also reminded me of my time-consuming hassles with HIP.

We did more research, asking friends with serious eye, back and other medical problems to identify their preferred specialists and hospitals and then checking to see if they were in Aetna’s network.

With one exception, the Aetna HMO network had all the favorites. We decided that Howard would switch to Aetna’s HMO. Proud of our careful and time-consuming choice, I was sure that Aetna’s HMO made more sense than its deluxe plan.

Preparing for surgery

Two years later, in early 2006, the endocrinologist treating me for diabetes decided insulin wasn’t doing enough for me and prescribed two fairly new drugs.

HIP had a very long process for approving coverage of the second drug. I presumed that was because it was not effective for most diabetics and was quite expensive. The review was exhausting, taking hours of time from pharmacists, my doctor’s nurse and me. I paid out of pocket several times to get the drug.

After the insurer finally gave approval, my pharmacist told me that he’d have to get reapproval every month. I gave up.

Such reviews are an important way to keep costs down. But with HIP it was hard for me to reach people and figure out what should be done. By comparison my husband’s experiences with the approval process for Aetna’s HMO were easy. I vowed to switch at the next open enrollment period.

So when my endocrinologist said that I might have Cushing’s, I mentally had already made my insurance choice.

Cushing’s disease, which often causes obesity, diabetes, depression and a characteristic moon face, affects only 10 to 15 of every 1 million people. The disease grows very slowly; I probably had had it for 10 or 15 years.

It took a while for my endocrinologist to confirm the diagnosis, partly because I kept postponing the inconvenient and seemingly endless tests. And before that final diagnosis, open enrollment rolled round again. If Cushing’s were confirmed, I knew I’d need delicate surgery on my pituitary, which lies at the base of the cranium. Having an expert surgeon would be critical, and this would affect my insurance choice.

When my endocrinologist told me about “this fantastic neurosurgeon we just recruited,” I immediately called the neurosurgeon’s office and checked Aetna’s Web site. He was in network, and a phone call to Aetna confirmed that he would stay in-network in 2007, when my surgery might take place. With that confirmation, I switched to Aetna’s HMO.

I thought I’d made a good choice. When premiums had gone up in my husband’s deluxe Aetna plan, we had done careful analyses that showed that Aetna’s HMO was just as good, and cheaper. As a result, when I made my own insurance choice, the deluxe plan, with its out-of-network options, never even entered my consciousness.

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?

Cost-sharing misery

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.”

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