That fire was savagely satisfying to Wendy, as if God himself were looking down on Beacon Street; but the word from Matt and Jamie was delay, delay. Jamie’s race toward a gene therapy had begun exactly one year before, in January of 1999. He had accelerated for twelve months and now he was slowing down as he approached a wall of flames. He wanted to carry out the gene therapy with Washington’s approval, but the whole brave new world of regenerative medicine was engulfed in political fire—set off by a scandal in gene therapy itself, in the city of brotherly love.
Jamie and Matt decided to put together an advisory panel of scientists to critique every aspect of their protocol so that each step would be as safe as possible. “I think the whole field is going to be scrutinized more carefully,” Matt said. “We’ll have to set up new procedures and be more conservative in terms of the amount of safety data we collect before each trial.”
“I’m afraid we’re going to have to put on the brakes a bit,” Jamie said. “I can’t tell you how much it kills me to say that.”
Thirty-Five
Publicity
One morning at Rockefeller in the middle of the political firestorm in Washington, I got a fax from Charles Michener, my editor at The New Yorker. He wanted me to call him right away. Charles told me that because the decision of the RAC was pending, David Remnick, the editor-in-chief, wanted to run my story now.
I had planned to follow the Heywoods at least a little while longer—I hated to end the story with so much up in the air. But I went home and tried to get it done in ten days.
While I worked, The New Yorker sent a young German photographer named Martin Schoeller to Newtonville, and he spent a day with Jamie and Stephen on the second floor of the carriage house. In the shot that the editors eventually chose, Stephen sits in a ruined armchair in a black leather jacket with his chin up, looking proudly and levelly into the camera, like a king on a throne. Jamie leans over him, resting his folded arms against the back of the chair. He wears an elegant dark jacket and tie, and just a hint of his Supermanic half-smile. He might be the king’s right-hand man. The space around them is nothing but darkness, rubble, rot, rusting bedsteads, and cobwebs.
In the picture, the Heywood brothers both look so handsome, young, and healthy that without knowing them it would be hard to guess which one could beat the other in a bout of arm wrestling. The story was a scramble for the editors at the magazine as well as for me, and on the Friday evening before they went to press, Michener and I were still on the phone going over our last changes. At seven o’clock or so, he called me back with his final question: “Just making sure. Is Jamie the one on the left, and Stephen the one on the right?”
In Boston on Monday morning, Jamie drove from newsstand to newsstand, kiosk to kiosk. He wanted the newsstand edition because the editors had announced the story in huge type across the top of the cover flap: “Curing the Incurable: A Brilliant Engineer’s Race to Save His Brother’s Life.” Jamie bought all the copies he could find, more than three hundred. He was even prouder of the story than I was, and he knew how to use it.
John and Peggy loved the story, and the portrait of the boys seated in the ruins, although John did wonder about the symbolism. John also wondered what the words on the cover flap would do to Jamie’s ego. He spoke to their family visionary in the dry, cutting, medicinal voice that everyone in the family had always administered to Jamie as needed. You know, Jamie, these journalists may say you are a brilliant engineer…
On the phone, Jamie told me that he and his small crew were distracted by all the attention. They were getting hundreds of crazy calls from quacks, zillions of crank e-mails. I quoted the old sign from down in the Mill Street basement, “Focus Focus Focus.” Jamie said, “We have a new sign up: ‘Fuck the Holistic Vitamin Vultures.’ ”
Someone on the RAC committee called me to say, off the record, how touching the Heywoods’ predicament was, and how awful it felt to read about it just then, while sitting on that committee. The voice at the other end of the line sounded guilty, conspiratorial, and distraught. “They’re all human beings,” Jamie said when I told him about that call. “There are no evil people.”
In Tennessee, the mouse was still alive. It was now one full year old. Jamie kept checking in with Marge Sutherland to ask after it. The Heywoods called it Minnie.
Jamie’s publicity accelerated just as he had planned. A television producer, Robert Wallace, decided to do a segment about the Heywoods for 60 Minutes II. A friend of the Heywood family, Richard Saltus, a reporter at the Boston Globe, finished a long feature for the paper, and the Globe ran it on the front page: “Hunt for Cure Gets Personal.” A few Hollywood producers were interested. They called Jamie, his brother Ben, and me. But they were wary. Where was this story going? How would it end?
A pair of documentary filmmakers in Cambridge, Jeanne Jordan and Steve Ascher, asked if they could make a film about the Heywoods. They had just finished a film, Troublesome Creek, about the struggles of Jeanne’s family farm in the Midwest. While they were editing it, Jeanne’s mother’s speech began to slur. They brought her to Boston to see Bob Brown, and he told them she had ALS.
Jeanne Jordan said that just after that appointment, she stepped into an elevator and found herself alone with Doctor Brown. Is there any chance, she asked him, that it isn’t ALS? He did not answer her right away, and when she looked at his face she saw that he had tears in his eyes. Jeanne’s mother died before they finished Troublesome Creek.
Now that my article was done, I was busy starting my seminar at Rockefeller, and dealing with crises in Providence. For my mother it was suddenly too late to hope for anything anymore, even from the edge of medicine. Things were going so badly with her that I had a few lunches that month with the philosopher Peter Singer at Princeton, to talk about the ethics of feeding tubes, living wills, and euthanasia.
Suddenly I was done with the Heywood story, which felt very strange. I kept in touch with them, and I followed the gene therapy debates. Some of the editorials that came out sound sensible and coolheaded to me when I reread them now. At the time, I took them as personal rebukes. The Wall Street Journal published a guest editorial about gene therapy. It was written by one of the New Yorker’s staff writers, Jerome Groopman of Harvard Medical School. When I read it I had to wonder if he was writing in response to my article. On the one hand I agreed with him; on the other hand I still hoped Jamie would save Stephen. “Expect progress, not miracles,” Groopman wrote:
Athena does not spring full-born from the head of Zeus. Rather, dreams become reality through hard labor at the laboratory bench and at the patient’s bedside. Promises are fulfilled by cobbling together increments of knowledge drawn from the many corners of biology and medicine. A roller-coaster ride is dramatic and dizzying, but ultimately returns us to our starting point. Genuine scientific progress is made on a steady chugging train that at times feels frustratingly slow, but delivers us to our destination.
Bioethicists explored the balance in the Heywood story between hope and false hope. Eric J. Cassell, a doctor on the National Bioethics Advisory Commission, told one medical reporter, Vida Foubister, in an online weekly called American Medical News that “the need for hope is coercive.” Some bioethicists suggested that “the most vulnerable patients shouldn’t be allowed in trials, because they can’t make a rational decision.” Their arguments outraged Jamie. “That’s just like totalitarianism,” he told the reporter. “It’s completely un-everything our society is about.”
“I think that’s one of the most condescending things I’ve ever heard in medicine,” Jamie told me. “I mean, it’s almost eugenic. If we’ve gotten to the point where human beings aren’t capable of making decisions in their own best interests, then what kind of a society do we believe in? Don’t you love a medical system that can produce doctors like that? I want to be treated by someone who believes that my opinion has merit.”
Stephen issued a formal statement: “I believe that the last few years hav
e seen a profound change in the way ALS is viewed by patients and doctors. I also believe that patients are living longer through a better understanding of the disease. The key to this is hope.”
With Jamie, Stephen had a new line. Now would be a good time, he said. If you’re gonna find something, now would be a good time.
If Jamie and his group did get permission in Washington for their gene therapy project, the surgeon on the team at Jefferson was still ready and willing to inject the EAAT2 gene into Stephen’s neck. That is where the motor nerves that control the arms are situated, and those are the nerves that first started to die. Although Jamie hoped that the procedure would do some good for his brother, Rothstein had asked me to emphasize in The New Yorker that it was only a safety test, a highly preliminary trial in which the doctors would find out whether they were causing any harm. In the long chain of trials that Katherine Evans had diagrammed for me on her yellow legal pad, the chain that can take a big drug company ten years and a hundred million dollars to complete, this was only the first step.
Rothstein was still confident that he could enlist twenty-five ALS volunteers from his clinic at Johns Hopkins. After the procedure, he would give Stephen and the other volunteers a battery of tests to see if the genes had any effect. Rothstein would test Stephen by repeated isometric stress tests, checking the strength of his arms, his legs, and his breathing. The arm is the most reliable test. The key test would involve a pulley system that measured the biceps, the triceps, the finger flexors, and the wrist flexors. Rothstein would be monitoring Stephen’s decline or improvement essentially by arm wrestling.
That month, Stephen was happy to have other things to think about. He and Wendy were getting married in Grace Church. Melinda and Jamie were expecting their baby soon, and by now Wendy knew she was pregnant. “We would have had children anyway,” she said, after she and Stephen had their first prenatal consultation with the obstetrician. “But now we have to try to live out fifty years in the next two.”
Stephen and Wendy got married on February 19. Peggy had said, Nobody will come. And everybody came. But she was right about one thing. Snow fell.
In a heavy New England snowstorm, Ben flew in. So did Peggy’s sister, who had had multiple sclerosis for fifty years, since she was twenty-two years old. She was now seventy-two and in an electric wheelchair, but basically in good health. At the house on Mill Street, Ben, the invisible brother, was interviewed at last by 60 Minutes II.
Stephen’s architect friend and mentor in San Francisco, Mark Little, flew in from California with his wife and daughter. A colleague of John’s flew in from Cambridge, England, overnight, and flew out the next day. Paola Leone was there. Duncan Moss, Jamie’s best friend, the one who had never learned the rules of arm wrestling and wrestling championships, came with his wife, Nena.
Jamie was best man. Stephen walked joltingly but he could walk down the aisle without help.
When the time came for the reciting of vows, Stephen began in a strong voice: “In the Name of God, I, Stephen, take you, Wendy, to be my wife. To have and to hold—” For a moment, the whole story seemed to pass across his face. He choked, and glanced up at the church ceiling to gather himself. “—From this day forward,” he went on, with a little smile of apology for the tears. “For better, for worse, for richer, for poorer, in sickness and in health. To love and to cherish, until we are parted by death. This is my solemn vow.”
Wendy got through her vows with some trouble, too. The minister set the ring in Stephen’s right palm. Stephen held it out to Wendy, and she took it and put it on her finger.
Everyone cried, even Peggy. (“My boys are good bawlers,” she says. “I’m not. Only time I bawl’s when I’m mad.”)
Melinda read a sensual Anne Sexton poem, and John read a passage from the Song of Solomon.
At the reception, the cousins sang incredibly off tune. They chose the same song they had sung at the beach when Wendy and Stephen got engaged. “Why do birds suddenly appear—”
Then a band played, with a priest on sax. And everybody danced at the wedding of Stephen and Wendy.
Thirty-Six
Into the Flood
By now Jamie could not walk into his favorite supermarket, Bread and Circus, without answering greetings at the door and questions in every aisle. On some days he enjoyed the attention and on others he sent Melinda inside for him while he sank down low in the car, hiding in the parking lot.
“But it’s nice I’m not just nobody,” Jamie told me. “I’m no longer cold-calling the way I was back in the basement. Everybody knows who I am.”
With all the publicity, he now found himself negotiating grants for one million dollars. He moved the foundation a second time: out of the ground floor of the Victorian and into office space in an old renovated mill in Newton Highlands. Having money and an office and a staff again made him strut. “We’re really out of the basement now!” he exulted on the phone. “It feels really strong. Sandblasted walls. Exposed brick. Glass doors. It is quite lovely. I have a big office. Too big, everyone here says, bigger than I need or deserve. But I tell them, hey, you’re all making more money here than you were before….”
That was a note I would hear again and again as the ALS Therapy Development Foundation took in millions. Back in La Jolla, Jamie had said good-bye to the fabulous houses and the fabulous pools: This is not what life is all about. Now the choices ate at him. In the parking lot, he discussed the features of the latest Porsche with one of the trust-fund babies who had volunteered to work for the foundation. Then he strolled from the new Porsche to his own set of wheels that day, Stephen’s old black pickup truck. He still wanted it all, and his longing for luxury led to more fights with Melinda. She wanted to sell the Victorian and the carriage house and move into someplace small, cozy, and quiet, a place where they could afford the mortgage themselves, where she could find the tranquillity to write, and to cope. She loathed the Victorian now. She thought Jamie clung to the house as if it meant something mystical to him, as if owning a fine house and a few fine things meant that all was not lost. Melinda wrote in her journal: “Would I be so frugal if Jamie did not buy the Armani suit?”
ALS-TDF was now a power among the many competing ALS family foundations. In my article, I had decided to say nothing about my doubts and worries. They were too vague—in the end, what did they amount to, as long as he kept on doing the right thing? My adventure in medical writing had helped Jamie get started, and now I could only hope that he would do something good. “Medical writers and editors for the general press don’t intend to inflict cruelty on suffering people,” the science journalist Daniel S. Greenberg has observed. “But that’s what they often deliver.” What would the Heywoods’ story deliver? Everything depended on what Jamie did now—and he made me just as nervous sometimes as he had in the beginning.
A mixture of truth, fantasy, real promise, and total hype still intertwined throughout his conversations. It was fascinating to experience and infinitely renewable, and it was part of Jamie’s core. I was alarmed and in some ways comforted to discover that other people often felt as queasy as I did. At scientific meetings, where Jamie hawked his foundation’s program, more than one expert thought of the Talented Mr. Ripley, a young man able to assume a role and play the part to the hilt. Some thought of Professor Harold Hill, the Music Man. Your skin began to crawl a bit, listening to him, and scientists who knew something about his great subject could see how he embellished and faked his way through it. Sometimes you could watch judgments play across the faces of the neuroscientists as they listened to him talk the talk and walk the walk. The scientists thought: He no doubt has himself convinced as well. It was almost as if, just out of sight, something very fine was struggling there with something bad.
For his board of directors, he had chosen a high-powered and experienced group, but the group would give him great freedom. It included John, Jamie’s father; and George Hughes, a Boston lawyer who sat on the boards of a number of public com
panies. Hughes had volunteered his time from very early days to help Jamie set up ALS-TDF. David Searls, Jamie’s cousin, was on the board; and Steve Fowler, one of Jamie’s new friends from the world of ALS, the man who had tried the stem cell therapy.
Melinda went into labor on April 7, 2000, and Jamie was delirious at the hospital. And when their baby girl, Zoe, was back home at the Victorian, he could not look at her without thinking in terms of the spine and the brain. The proud father was also a genetic engineer and an alum of the Neurosciences Institute. “You can watch the intensity of her eyes, every day, as she nurses,” he said. “You can see her brain wiring.” Melinda snapped pictures of Jamie diapering Zoe with the phone to his ear. The birth of Zoe did not slow him down. He was not sleeping anyway. “For me sleep’s more of an emotional issue,” he told me. “I don’t need that much. If I get too much sleep, I get depressed.”
His gene therapy project was moving very slowly. Not only was the field superheated, but Matt and his team were having technical problems with the viruses, which were now being engineered by his lab in New Zealand. “Slow-me-down, annoying things,” Jamie said. They still could not get the EAAT2 gene and its promoters to fit into the virus. The package of DNA the Auckland team engineered, following Jamie and Matt’s specifications, was too big for the virus capsule. Jamie and Matt designed a smaller DNA package, but when they tried it on nerve cells in petri dishes, the cells did not make enough EAAT2. Again and again the tests failed: If the engineers used the package they wanted, they could not get it into the nerve cells; if they used a package they could get into the cells, the cells would not do anything with it.
There were more rounds of meetings in Matt During’s office, with the calendar pictures flipping now from month to month. There were many meetings at Jeff Rothstein’s office in Baltimore, too, looking for clues in his latest unpublished studies of the EAAT2 gene, trying to learn from the natural engineering of the gene a clever way to reengineer it in the laboratory. The team tried a series of different promoters, with frustrating results. Jamie predicted that his EAAT2 gene therapy would be ready not in June but in September of 2000. “I hope that won’t slip again.”
His Brother's Keeper Page 30
