The Cost of Hope (21 page)

As the summer heat spreads through 2006, Terence is getting better and my work is getting harder and harder. Tensions with the new owner are rising. Every night I come home to Terence with the tale of some new, usually unpleasant, twist. I begin to feel the odd, lurching vertigo of riding the waves of big uncontrollable shifts in power. Daily life begins to feel like some HBO special on the Borgias, or perhaps
I, Claudius
. Conversations start and stop depending on who is in the room. Cabals form, dissolve, and reform again. The neutral middle of satisfying work well done is crushed between the glaring counterpoles of—for some people—ambition unleashed, and for others, despair. Both appear in unexpected places, owned by unexpected people. Each feels equally
unsettling. At night, when I can’t sleep, Terence walks me up and down the halls of our house. Up and down. Up and down. And for just that moment, everything is okay.

I am fired on Wednesday, November 8, 2006, one week after Terence begins his ninth cycle of Avastin.

That afternoon, I get a call from Matt Winkler, editor in chief of Bloomberg News.

“So do you know what you are doing next?” he asks me.

“No,” I say.

“Well, I do.”

Matt is an old friend from my
Wall Street Journal
days. Bloomberg is a once-upstart organization now flexing some big muscles. But how can I work there? It’s known for its 6:00 a.m. meetings, sixteen-hour days, and grueling pace. What’s more, it’s a two-hour commute from home. Each way.

Thrown off one bucking bronco, I’m being asked to jump onto another one and begin another wild ride, this time at a place just as ferociously determined to grow and thrive as the last one was to try not to vanish.

Terence once again steps into the breach.

“Don’t worry about a thing at home. I’ll handle everything,” he says. “Do it.”

And so I do.

We live in hope.

So what’s the cost of all this hope?

That’s the big mystery that my colleague Chuck Babcock and I work for six months to discover. Starting in the summer of 2008, and working well past the second anniversary of Terence’s death, I fax off requests to hospitals and doctors. Meanwhile, to help us understand what we are looking at, Chuck builds a series of spreadsheets, and I compare what we are seeing with my memories of our experience and my reporting.

You might think that I would have a pretty good idea of the costs of Terence’s illness. After all, throughout all of his treatments, the statements from the doctors’ offices, from the hospitals, and from the laboratories poured in regularly. Every month also brought a blizzard of envelopes from the insurance companies, the “explanations of benefits” that were supposed to tell me what we had been billed for a service, what the insurance company paid, and what we owed.

At first I think my own messy life is the reason I didn’t really have a clue about the costs. I am more than usually disorganized, more than usually perplexed by detail, more than usually panicked when confronted with numbers I don’t understand and can’t make sense of. And, as Terence got sicker, slowly and subtly I found myself increasingly overwhelmed. I kept the mortgage paid, the lights on, and the kids fed. I kept the car insurance current and the kids’ shots up to date. When doctors’ bills came with
balances on them, I paid them. But tally them up? Figure out who was charging what for what? Untwist the maze of providers and services? Half the time the bills came with names I had never heard of for things I didn’t recognize. I had no trouble at first believing I was to blame for my own lack of knowledge.

Yet the more Chuck and I work, the easier it becomes to see why despite the blizzard of paper I received, I had no idea what anything cost. As we leaf through the stack of documents, it is also easy to see why 21 percent of the money spent on health care goes to paperwork and administration. The bills we review are voluminous and often incomprehensible. Some take days to decipher. What does “opdpatins t” or “balxfrded” mean? How can I tell if the dose charged was the same as the dose prescribed?

Chuck and I make nuisances of ourselves with the folks on the other end of the line. Who were these doctors whose names were on the bills? We unearthed bills with complicated corporate names, for health care providers Terence and I never met, for procedures I can’t remember happening. Sometimes one visit generated a flurry of bills from a half-dozen different providers. From the doctor. The person who took the scan. The person who read the scan. Sometimes the insurance payments lumped several different things together into one generic heading—like “radiology.”

As we work, a strange pattern begins to emerge: We begin to see that some things that should have cost about the same had wildly different price tags. What is going on? Why are our numbers varying so wildly? To try to figure out what was happening, we picked a common, standard procedure: computerized tomography, better known as the CT, or CAT scan. Computerized tomography is a procedure that links a rapid series of X-rays to make a 3-D image of a patient’s organs. Terence had been having CAT scans pretty steadily ever since that first day in the emergency
room in Oregon when the cancer was discovered. During the Avastin/Nexavar trial, it was the results of the CAT scans that we waited so breathlessly for.

Surely it should be reasonably easy to find out how much we—through my employer’s insurance—paid for each one.

Unexpectedly, my messy life turns out to lead us to surprising insights. Because Terence and I moved a lot, Chuck and I can now see what most people never get to see. We can see not only what one hospital charged for the scans, but also what many different hospitals and other providers all across the country charged. And because each move came with a change of employer—and a change of health insurance—we can see something even more interesting: We can see what different insurance companies reimbursed for pretty much the same procedure. By the time he died, Terence had received benefits from four insurers and had undergone procedures in four different states. He was also eligible for Medicare for most of this time, although we never used it.

The first thing that surprises me from our research is simply the sheer number of the procedures that Terence had. If Chuck had asked me how many CAT scans I believed Terence had had, I would have guessed sixteen. One for each cycle of the clinical trial and, say, a half-dozen more throughout the years. Wild guess.

The answer is seventy-six. Seventy-six CAT scans during a seven-year illness. More than ten a year. I’m sure Terence’s guess would have been more accurate than mine, but I’m also sure he would have guessed low too. Way low. Some of the scans were ordered by Dr. Pierce, some by Dr. Bukowski, and some by Dr. Flaherty. But many others were ordered in various hospitals across the country, some by doctors we never met for purposes I can’t now explain. Since none of us—Terence and me included—had to account for the cost of these procedures, all of us, doctors
and patients alike, could casually afford to pop them like cherry Twizzlers.

Were all of them useful and ordered for a good reason? I’m positive of that. Were all of them necessary? I’m just as sure not.

And how much did they cost?

Some scans were done on the old enclosed-tunnel machines. Some on daintier machines that had more open space and made less noise. Some were done “with contrast”—that is, with a special dye used to help see the cancer. Some were done without. Some were done in hospitals, others in stand-alone imaging centers that do nothing else. Overall, though, each of the scans was pretty much the same.

Yet from Portland to Philadelphia, from 2000 to 2007, the price of the procedures ordered by Terence’s doctors ranged from $550 in April 2001 at EPIC Imaging in Portland to $3,232 in 2006 and 2007 at the Hospital of the University of Pennsylvania in Philadelphia. In between were charges like $1,252 at St. Joseph Hospital in Lexington, Kentucky, in 2002 and $1,750 at the Cleveland Clinic in 2003.

The most expensive charge was more than twelve times the amount reimbursed by Medicare in 2007, the government health program for the elderly and disabled that is the biggest U.S. payer of medical bills.

What’s more, we discovered that the amounts the hospitals and providers billed the insurance companies bore almost no resemblance to the amounts the insurance companies actually paid. And each insurance company made a totally different calculation of what they would pay for the same procedure.

The turmoil at the
Inquirer
provided a startling insight into this fact. Because the
Inquirer
’s new owner immediately changed our health insurance plan, Chuck and I are able to see something strange: what two different insurance companies paid for the same procedure.

In late 2006, following an Avastin cycle, Terence had a scan at the University of Pennsylvania hospital, which billed the insurance company $3,232. My insurer that month was UnitedHealth Group, which paid $2,586.60, or 80 percent of what the hospital asked.

Three months later, another Avastin cycle, another scan. Same patient. Same hospital. Same machine. Same $3,232 bill. The only thing that has changed is that my employer has switched insurance companies. The new insurer, WellPoint Inc.’s Empire Blue Cross and Blue Shield, paid the hospital $775.68, or 24 percent.

At that time, Medicare was reimbursing $250.94 for the same procedure.

And what would someone without insurance pay the University of Pennsylvania hospital for a similar scan? We accidentally found that out too, when a stray record found its way into our pile. This unfortunate person, who was paying the bill out of pocket, paid $1,657—or $881.32
more
than Blue Cross paid the hospital, and $1,406.06
more
than Medicare paid.

What did Terence and I pay?

Nothing.

What was this all about? Why did these prices vary so much? And why was what actually got paid so wildly different from hospital to hospital and from insurance company to insurance company?

It takes a lot more calculating, a lot more calling—and something I observed during another trip to China—before I can finally wrap my mind around what was going on.

From halfway around the world, I hear the cancer return.

I am standing less than a mile from the place where Terence and I first met when, nearly a quarter of a century later, I hear him coughing.

Thanks to the Avastin, life has been feeling pretty good to all of us as the spring of 2007 turns into summer. Terence continues work on his book of Chinese poetry. He begins writing a screenplay. Terry is playing and singing all over the country with the School of Rock. He and his high school buddies write six songs and burn a CD in one of their living rooms. Georgia becomes a decent tennis player. I rise every day at 4:30 to begin my day at Bloomberg. My new job takes me all over the world. Prague. London. Paris. Madrid. Singapore. And finally, back here to Beijing.

The city where Terence and I met is gone. The years have lifted the darkness from the Boulevard of Heavenly Peace. The eerie blackness that greeted me 8,987 days earlier—the day my first flight here circled the city—is gone. Now neon shouts to the sky, defining streets and boulevards that weren’t even imagined in the Peking where Terence and I collided a lifetime ago. Driving in from a flight in the summer of 2007, I see the old linden-lined airport road, shadowy and silent, running under the brand new flyovers and cloverleafs.

Downtown, the horse carts have disappeared. The stone-floored courtyard houses are gone. Even the human wave of bicyclists has nearly vanished, replaced by an even wider and more daunting
sea of automobiles. The 1980s’ dusty monotony of a city recovering from siege has exploded into a riot of restaurants, karaoke bars, cinemas, and storefronts. Skyscrapers swallow whole neighborhoods.

I host a dinner for our news bureau at the Lan Club, across the street from what was once my home. The restaurant has black crystal Baccarat chandeliers, a cigar bar, five-foot-long sushi boats, walls made from oil paintings, and room after room of artistic kitsch—women’s satin shoes abutting rhinoceros heads, Hindu icons and velvet chairs. Over cocktails, I find that one of my new colleagues grew up not far from here. I do some quick mental math and realize that this svelte young woman could easily have been one of the bare-bottomed babies Terence and I saw squatting with their young parents on a summer night on the sidewalk outside my compound. In the China that Terence and I inhabited, uniformed guards with guns stood between us and her. Chic and trim, she orders a Chardonnay.

I can hardly imagine a Chinese nostalgic for those dark days of cold and hunger and monotony. Yet without even realizing it, I am mourning. What for? An era. A vanished moment in history. A lifetime. Do I unconsciously realize what lies ahead? I don’t know. I don’t think so. I still don’t see it coming.

This time around, Terence has no interest in coming with me. He has retreated further and further into the China of the past that he loves so much. He is putting the finishing touches on his book. It is a textbook of classical Chinese poetry, hundreds of poems carefully glossed and explained, with detailed notes on poetic convention through the dynasties. He is the only man I know who knows the Chinese words for “amino acids” and “artificial insemination” as well as “alliteration” and “onomatopoeia.” A Kinko’s
box marked “ChinaPo—Good Copy” still sits on my desk. He had been lending his book out to Chinese professors around the country to use in their classes, and this is a copy that remained.

My trip takes place at the end of August, summer vacation, which is why Georgia is here too. She hasn’t been back to China since the day she left as a Mandarin-speaking almost-four-year-old. Now at thirteen she is an extraordinarily self-sufficient young woman. I have long, grueling days of work during which she is alone. A week later in Tokyo, I will leave her in our hotel room with money, movies, and permission to call room service. When I return at the end of the day I find the beds covered instead with an array of takeout sushi, pastries, bottled soda, chips, and nail polish in unfamiliar colors.