The Cost of Hope (22 page)

“How did you do that?” I ask.

She barely looks up.

“Pointing,” she says.

In Beijing while I am at work, she visits with friends of my friends from the past. She tours the Forbidden City and the Great Wall. She shops. Terence and I have filled her with stories of the poverty, the oppression, the lack of opportunity that causes young Chinese women to give up their daughters. On this trip, our speeches’ messages are crushed in a hail of Gucci, Chanel, and Coach knockoffs.

The country of her birth has vanished.

I take her by the Jianguo Hotel to see Daddy’s old room. The Chinese words for the room number: SI-ER-
san
—423—the first two syllables emphatic, the third lilting—are burned into my memory. The hotel, once a palace of luxury amid the Beijing gloom, now feels seedy and downcast, like one of those lost and abandoned motels on the drive to Florida along Route 1. Time has passed both by. Georgia is bored. We photograph the door to show Daddy. Every night we call him to tell him the news.

On Monday, September 3, 2007, on one of these calls, I hear the cough.

“You should get that checked out,” I say.

I am not worried. I am not even vaguely concerned. I am thinking Claritin or NyQuil. It never occurs to me that here in Beijing, barely half a mile away from where we began, I am hearing the beginning of the end. It is twenty-four years to the day from that long-ago party where I met that would-be Soviet expert.

Four days after our phone call, on Friday evening, September 7, 2007, Terence and Terry, bouquets of daisies in hand, meet Georgia and me at Philadelphia International Airport as we step off our seventeen-hour flight home. We stop for dinner at our favorite Indian restaurant and ask a passerby to snap a photo. The stranger catches Terence and me grinning. Terry’s auburn hair flames copper in the last of the day’s sun. Georgia is lithe and lovely, almost an adult. Terence is round faced, robust, and cheery, his pocket stuffed with his usual index cards. We all look relaxed and happy. “Yep,” says Terry when he sees the photo later. “Everyone is right with the program.”

Terence coughs through dinner.

The following weekend, Terence and I fly together to Detroit for a retirement party.

By then he knows that his cough is caused by an unexpected growth in one of the cancerous spots. He learns the result of an earlier scan: One of the spots that the Avastin has hollowed out is filling back up with cancerous cells. The new growth is irritating his throat. Dr. Flaherty calls it a “refill,” Terence says. I feel bad for him that the cough is so annoying. Beyond that, I feel no real
concern at all. More than six years have passed since we first saw the shadow. We have been through this before. We have dodged death three times before.

Why not a fourth?

Our party is a warm, intimate gathering of old friends. Janet, a professor of folklore. Her husband, Andrea, an Italian professor and lover of Dante Alighieri. Their daughter Mia, a chef. Our friend Katy, a papyrologist. Katy’s husband, Linos, whose retirement from General Motors we are celebrating. These are our people. The house is snug and cozy. There is plenty of wine. Andrea fills the house with the smell of Italian cooking. We dip our bread in olive oil and laugh at nothing.

Only one thought darkens my pleasure at this gathering of old friends. That is my fear that it will be our last. My fear is not for Terence. It is for Janet. After many years, Janet’s own breast cancer has returned. She and Terence murmur in the other room as Andrea and I chat. I memorize the details of the room. I mull over my pleasure in our shared past. I listen to Andrea and watch Mia, studying for clues that will help me later. What will my life be like when she is gone? How will I be a friend to her and her family? How will I console Andrea and Mia when Janet is gone?

Terence coughs through dinner.

Do I miss something? Do Janet and Terence, in that quiet moment off in her book-filled living room, each confess to the other their fears for the future? Does Terence know more about what is ahead than I do?

Janet says no. She and Andrea both remember an evening of everyday conversation—talking with Terence about some nearby relatives, about their fathers, and music and books. Off in the living room, she and Terence compare notes. They talk about their treatments. There are no cosmic moments. Janet remembers feeling that Terence sees this recurrence, as I do, as just one more
issue to deal with. “I do remember that we agreed that the whole thing was a bitch, but that we were going to have one hell of a party and enjoy ourselves,” says Janet.

The fall is busy for the whole family. Georgia starts eighth grade. Terry begins college. Terence plunges back into a regimen that we believe will help him beat back the cancer once more. We hope that the annoying spot can be lasered out to give him some relief. Meantime, our best plan is to resume Avastin treatment.

I mentally pause at this point.

Resume Avastin.

Resume?

When Terence tells me that this is the plan, I have to stop myself from crying out. Resume? For much as I torment my mind, I cannot recall his decision to stop. Yes, he says, matter-of-factly. He stopped back in May. I know now from my conversations with Dr. Flaherty that Terence believed he would be cured. Did he believe that he already was cured? Did he believe in the cure, not too little, but too much?

After a year without any growth in the tumors, Dr. Flaherty and Terence decided that it was safe to give him a break from the fatigue, stomach distress, and itching that so bothered him. Did Terence tell me? Did I not pay attention? Did I know at one point and simply forget? Or is it possible that this is just one decision he needed to make alone?

I’ll never know.

By the time he tells me, the metastases are back and Terence is blaming his choice. Not to worry, Dr. Flaherty says. Avastin has worked once. Avastin will work again. On September 17, 2007, Terence resumes his Avastin drip. For six weeks in a row he returns to the hospital. An Avastin drip on October 1. One on October 15 and one on October 29.

This time Terence is no longer a part of a clinical trial. When he leaves the test in May, he can’t go back on it. That means the drugs are no longer provided free by the maker. A lot of paperwork, explanations, and reports from Dr. Flaherty and Terence get the drug on an “off-label” basis. That means that Dr. Flaherty can prescribe it for a patient he believes will benefit from it, even though it still isn’t approved by the FDA for kidney cancer. That also means our insurance company will pay for it.

Which is a very good thing, it turns out.

A look at our insurance records from that time shows why these new drugs are so controversial.

Starting in the month of October, the first month when Terence takes Avastin as a patient and not as a trial subject, Blue Cross is billed $109,440—or $27,360 for each of the four doses of Avastin Terence receives. Each dose costs more than the entire surgery to remove his kidney did back in 2001. As it does with all the other bills, the insurance company negotiates down the actual payment to $6,665.40 a dose, or $26,661 for the four doses. Again, we pay nothing.

I don’t get it. If the insurance company can negotiate a price cut of more than $20,000 a dose, then where does the rest of the money go? And why do hospitals and doctors and other health care providers sometimes take 20 percent of what they ask and sometimes 80 percent?

My head spins.

Since Avastin is the single biggest cost of Terence’s entire treatment, Chuck and I try to find out what the “real” price is.

First off, we try Genentech, which makes the drug. Back in 2006 and 2007, Genentech was charging wholesale distributors $550 for 100 milligrams of Avastin. Based on Genentech’s pricing, Terence’s 350 milligram dose of Avastin should have been $1,925,
or less than one-fourth the amount the hospital charged, and a third of what they actually got from the insurance company. And Genentech says it can’t help what anyone decides to charge for the medicine it makes.

What gives?

The hospital says it can’t say. It says its contracts with the insurance companies prevent it from discussing the discounts it negotiates. The insurance companies say the same thing. What’s more, the hospital says it wouldn’t be good to tell patients what the charges are anyway, the way some places do. There would be “hundreds of thousands” of items, says a spokeswoman for the hospital, and seeing those numbers “would not benefit our patients.” Instead, she says in an email, the hospital has “specialized staff” to speak with patients about costs of the care.

I still don’t get it.

I understand the concept of discounting. I understand the concept of bargaining. I’ve bought several cars and sat tapping my fingers while the unctuous salesman goes off somewhere to see if the mysterious, unseen “boss” will approve this “deal.”

But $20,000 a dose?

Negotiated down to three doses for the price of one?

Suddenly my mind flashes back to China. To Georgia in China. To Georgia in China bargaining in the Silk Market downtown. The vendors waving fake Chanel purses shout out ludicrous prices: “Two thousand yuan!” they cry—$300! What a bargain! Cheap! Cheap!

Why would they ask such a silly price for such an obvious imitation? What a dumb thing to do, I think to myself. Yet I realize the logic of their tactics a few minutes later when I overhear a happy tourist group leaving the market.

“I got it for two hundred yuan!” one woman is exclaiming. She is clutching the same purse Georgia has just bargained down from two thousand to twenty.

I think health insurance works just like that behind the scenes. The payers and the providers are bargaining like car salesmen or Chinese vendors—naming ridiculous prices that have no bearing on reality, hoping that some won’t drive such hard bargains.

And the only ones who can’t see what is going on are the people like Terence and me who are using the care, and the employers like mine who are paying the bills.

Terence never knew any of this, of course. He knew neither what was billed nor what was paid. I wonder now what he would have thought if he realized that the life-extending one-hour drip was billed at the cost of half an Ivy League tuition every time he sat down. I try to imagine his reaction. He had a way of expressing surprise that annoyed me when he pulled it on me because it could be so theatrical. His jaw dropped like a marionette’s. His eyes widened in comic astonishment. I can see him sitting there with the IV in his arm, laying aside his Chinese or Latin or French or Spanish vocabulary cards, and contorting his face in horror. The drugs have saved his life. They may do so again. Yet in my mind he is furious at the cost.

“Morons! Thieves!” I can hear the rant.

Yet would he have done anything different?

Over the next few weeks, we gear up for the next phase of our fight. I am impatient and irritable, not anxious.

Impatient? As we wend our way through the new Avastin cycles, we both tap our fingers, look at our watches, review the calendar, and anxiously wait for the drug’s effects to kick in. Because the cough, the side effects, and the fatigue are making him miserable, Terence can’t wait to feel better. I am looking ahead to dates in our lives and planning when we will get back to normal. By Christmas, certainly, I think. And Thanksgiving? Even that might be reasonable. By the time the family descends on us, things should be stabilized. Do I dare plan on a more ambitious timetable? We have a theater date with the Pulitzer Prize board in the middle of November. Surely he will be well enough to do that. I RSVP back a yes for both of us. I have been asked to give a speech in Dubai at about the same time. It would be great if he could come with me. That’s probably pushing things. I plan to go alone.

Irritable? Whenever I am with the doctors, I am always impressed with what they know. How they try to include us in the discussions. How sincere they appear.

But their world? The world they—or someone—has constructed around them? It is impossible. A labyrinth. A fortress. A Rubik’s Cube. I exhaust all metaphors in frustration. Each doctor’s practice is set up for him or her. They have their own days of the week. Their own receptionists. Their own appointment protocols and their own billing systems. Some of them have their
own companies with their own weird names. They’re all working in ways that are best for them. It hardly ever seems that they are working together in ways that are good for us.

Over the years, this kind of thing is yet another subject Terence and I clash over.

“Goddammit!” I hear him shouting over the phone, pounding his fist on the counter. “I don’t WANT to press one. I want you to help me. Now!”

“These systems have been designed for THEM, not for us,” he rails—at me, now, not the phone. “They are designed to keep us away from them, so they can do their own little work without us bothering them. I’m the CUSTOMER, goddammit. I’m why they are in business.”

I chide him for his impatience—and selfishness. I see the other side. As editor of a large newspaper, I know all too well that one angry caller may in fact be just one of two, or ten, or fifty—or even a thousand callers, each with the same issue. Each believing himself or herself unique.

“I don’t think it’s unreasonable to—”

Terence cuts me off.

“Who designed this system? I want the name. Which person? I want to know whose fault this is.”

He wants someone to call. Someone to talk to. Someone to throttle.

“Terence!” I am exasperated. “There isn’t any one person; it’s a system.”

That enrages him all the more.

“That’s what Kafka writes about,” he yells. “Everyone’s evading, ducking and weaving. There’s no one to blame. No one takes responsibility. Everyone is JUST DOING HIS JOB.”

His voice drips with sarcasm, his tone coils upward.

Now I see what he means. I never do find anyone to blame. Each individual person I find is completely reasonable and caring—often
going far beyond what he or she needs to do. But today, looking back over those weeks, there is no question in my mind: This system isn’t designed for me and Terence. It is designed for them. I spend days, hours, punching in “1,” sitting on hold. Waiting for a callback. Scrolling websites, reading biographies—trying to figure out who the doctors are we are dealing with, whom we should be dealing with, and how we get through to them.