“It’s not that I didn’t believe it was possible,” Stephen said. “Well, I guess I had doubts. Somehow I doubted that the idea for this particular therapy was possible. And so what if it was possible, how would it get done?” Jamie was turning their lives upside down for such a long shot. “Even if it might work,” Stephen said, “I wasn’t sure that’s what I wanted him to do. What if I just wanted him to be in Boston, spend time with me, stuff like that?
“But it was very clear that it didn’t matter whether or not he could do it, or whether I thought he should. I mean, he was so focused that you couldn’t even have tried to stop him. It would’ve been counterproductive. Jamie could’ve easily gotten a job back here and stuff like that, but there’s no way he would’ve. There was no stopping him. So that made things easier for me, I guess—easier than worrying about whether we were doing the right thing.” When Stephen did bring up his doubts, Jamie gave him the same answer he gave their parents: If I think there’s even a possibility, I can’t not do it.
It was the fall of ’99 when Stephen and I had that conversation. We were driving around Newton in his pickup truck. “I’m trying to think what on earth I did with the spring,” Stephen went on. “I tell ya, I feel like it was a blur of working on the house a little and then hiding from the foundation, because it was in my basement. Oh my God, that’s part of it, too. We redid the basement as well. Ugh. It was constant, and these guys are down there working like crazy. And Jamie’s coming down at eleven o’clock at night to do shit, and I’m in there with Wendy, and I’m like, ‘Just don’t come down here right now.’ And I’m spending nights at Wendy’s, sleeping on her too-short bed and coming home with cricks in my neck.
“But that was fun, too, because it was all sort of new and exciting, buying cheap desks and a computer, and stuff like that.”
Before Jamie arrived, Stephen had spent his time trying not to think about ALS. Of course, there were plenty of nuisances to remind him. He knew he was sick whenever he needed his right hand. “I guess I don’t really ever think about dying,” Stephen told me that fall. “I just think about what the future of the illness is like.” Before Jamie moved down into the basement, Stephen had been able to look ahead very selectively, or as he put it, “in a very focused manner. I could think about it at certain times. The problem with the foundation stuff was that I lost that ability completely, because it was always being talked about. As Ben called it, ‘The all-ALS channel, all the time.’
“What’s so odd about this—” Stephen said, with a sardonic laugh, “is that ALS sort of speaks to my inherent laziness. I mean, it’s a disease where you become gradually less and less able to get up and do stuff.”
He was in love with Wendy, but everything was moving very fast—especially for a slacker. He still held on to his Cave, and she held on to her apartment. “Then Wendy came to me, and she had been nervous and stressed all day, and I said, ‘What’s wrong? What’s on your mind?’ And she’s like, ‘It’s stupid. I don’t wanna tell you. It’s dumb,’ and I’m like, ‘No. What is it?’ for like four hours or whatever, trying to get it out of her, and she’s like, ‘Well, I’m worried about us having a kid if I’m not married, and I don’t know if that’s a good idea.’ ”
Stephen told Wendy he felt the same way. And so it was decided between them, more or less: marriage. “But it’s odd,” Stephen told me. “You know you want to have kids first. And then of course, wanting to get married because you want to have kids. I don’t even know how to separate it out, and I wish I could, but there’s nothing to judge it against. You can’t say, ‘Well, this is what would’ve happened, you know, if things were normal.’ It also doesn’t matter.”
He no longer wanted to ride off on a Harley. Sometimes he still drove around Boston in his pickup truck looking at handyman specials. But on most days, while Wendy was at work, he sat in front of the computer and played games. “The computer lets me turn my brain off for a few hours,” he would say. “Maybe it’s a waste of time, but who gives a rat’s ass.”
One bright afternoon in March 1999, Jamie called me from his car. He had just driven down from Boston to Baltimore to see Jeff Rothstein at Johns Hopkins. Now he was driving back to Boston. My home, Doylestown, Pennsylvania, was not really on his way, but Jamie made it sound as if he would be right next door. As long as he was passing through, he wondered if we could meet in person.
I was sitting on the deck of a café in Doylestown when he came bounding up. Some people look marked for adventure. There is something clean and well made about them. They carry themselves as if they know how much they stand out from the rest of us, all humbly hodgepodge as we are. I could see at first glance that there was some calculation in his charm. But that came from desperation, I thought, and I was willing to be charmed.
We drank coffee and he told me his story as I have told it to this point. Even in that hopeless situation, he managed to carry himself like a winner. Every few minutes he excused himself—another message on his pager or his cell phone.
I knew it had to end badly. I think he knew it, too. But I still hoped that through sheer energy, will, and intelligence, Jamie would snatch some kind of victory in spite of everything—and not be destroyed with Stephen.
The longer I listened to him talk that afternoon, the more trouble I had keeping my head and remembering what Ralph had written about the slimness of Jamie’s chances. And I still had some distance from the story. If I was having trouble, I wondered how Jamie could manage—young, speeding, unsleeping, with his impossible project to sell, and a brother to save.
Sixteen
The Drowning Incident
Jamie is a light switch, on or off, and a few days later he closed down. An entrepreneur in California had given him a list of prominent gene therapists, and Jamie sat at his door-desk in the basement and stared at the list.
“He was stagnating,” Melinda says. “Pulling himself like taffy.” He paced outside the Cave melodramatically, crying, What is the next step? What is the next step?
He called a few of the gene therapists on his list, and they did not call back. A few others listened and pleaded full plates. Meanwhile most biologists told him that the field of gene therapy was hopeless.
“It is very easy when you are feeling insecure to be bounced up or down by how it goes,” Jamie said, trying to explain those lost days and his frustration with himself. “See, I’d told Jeff Rothstein that I could get someone to make gene therapy. And then I had to go do it, and I was procrastinating because I was afraid to fail. There were a couple of discouraging conversations.”
Gene therapy was already almost twenty years old. The field was begun in 1980 by Martin Cline, a specialist in blood diseases at the University of California, Los Angeles. Cline had thought of an experimental cure for thalassemia, an inherited form of anemia. He wanted to extract bone marrow from his patient, put it in a petri dish, inject a gene into the bone marrow, and then put the bone marrow back. Cline could not get permission at UCLA for that experiment, but he did it anyway with collaborators at clinics in Italy and Israel. So the field was born in scandal—and the gene therapy neither helped nor hurt the patient.
This had been typical of the field ever since: secrecy, controversy, a millennial aura, perpetual promise unfulfilled. In the United States, all experimental treatments are monitored by the FDA. But because gene therapy is so novel it is also monitored by the Recombinant DNA Advisory Committee (RAC)—an extra level of bureaucracy. About 4,000 Americans took part in about 400 gene therapy trials in the 1990s, mostly experimental treatments for terminal cancer. By the spring of 1999, nobody had been killed but nobody had been helped, either.
Small biotechs and big pharmaceutical companies were backing away from gene therapy. The Swiss drug company Novartis had put millions into a major gene therapy project for brain tumors. Novartis had just killed that project the year before. One of the big biotechs, Chiron, decided to stop developing new gene therapy projects in 1999. Many biotechs that
had sponsored gene therapy trials in the 1990s had more or less folded by the spring of ’99, and the stocks of the survivors were suffering.
It looked like a very hard year for the field. James Wilson of the University of Pennsylvania in Philadelphia was president of the American Society for Gene Therapy. Like everyone in the society he felt battered, and he was anxious about their latest round of experiments. So many years of hype, so little progress. The general feeling was that the year would make the field or break it. At the society’s annual meeting in June, Wilson would tell the audience, describing one of the field’s very few promising projects, a gene therapy for hemophilia, “The stakes are incredibly high.” He was talking to his peers. He could be frank. “For once I may say what I really think: I hope to God this works.”
Besides his list of gene therapists, Jamie had a list of scientists whose research might relate to his plan. One of them was a young biologist named Margaret Sutherland at Vanderbilt in Tennessee. She worked on epilepsy, not ALS. But she had genetically engineered mice that made too much EAAT2 protein, the pump that fails in people with ALS. Jamie wondered what would happen if those mice were crossed with ALS mice. Would their extra EAAT2 make them live longer? Would it cure them? It would be a quick and dirty test of his gene therapy for Stephen.
Jeff Rothstein was willing to try that experiment if Jamie could persuade Margaret Sutherland to send him some of her mice. But she was very new to her field, and her research was moving slowly. After a few brief conversations with Sutherland, Jamie let that lead go.
“Jamie out of his mind with obsession, pinched and grabbing hair, worried, working in franticness,” Melinda wrote in her journal on April 12, 1999. “I keep teasing him but he is on edge, on an edge without much humor.” She had just finished going through their paperwork and their bills. They owed $8,000 in taxes. At least, staying with John and Peggy, they did not have to pay rent. “Thank God we are living here.”
That day Robert Bonazoli joined the foundation full-time. On April 14, 1999, the foundation incorporated in Massachusetts as a nonprofit organization. On paper, at least, Jamie’s project was real.
“It’s official,” Melinda wrote in her journal. “I only hope he holds together.”
Jamie was checking in with me now almost daily, and I was calling biologists I knew to ask their opinion of his project.
I knew a neuropathologist at the University of Southern California, Carol Miller, whose mother had died of ALS. Carol’s husband is Seymour Benzer, the hero of Time, Love, Memory. She and Seymour had taken care of Carol’s mother in their home, and Carol had since begun to study ALS. In her laboratory she had tissue samples of her mother’s brain.
Carol found Jamie’s story fascinating. She told me she was very excited about Jeff Rothstein’s papers and the EAAT2 gene. “It’s a really good idea,” she said. “I think he’s got a really interesting gene, a really interesting gene.” Jamie Heywood might not save his brother, Carol said. “But this is the way advances are made.”
On the other hand, most biologists told me that Jamie’s idea was crazy. When I mentioned it to a famous molecular biologist at Rockefeller, he literally rolled his eyes. “Most people feel this is the time to figure out why gene therapy is not working,” he said, “not a time to be trying it on human beings. Of course ALS is a terminal, awful, horrible disease. So when someone knows that they have it, they are willing to do anything. It’s a little like prisoners on death row. The question is whether we’re ready for those experiments.”
While I was calling on biologists, I heard a rumor. Jacques Cohen had invited a group of infertility specialists on a cruise in the Caribbean. Cohen was organizing a retreat for his group and some other fertility doctors. They wanted to meet privately to think about the future—to speculate where their science was taking the human species. They were surrounded by such publicity now that they wanted to get far away from reporters and bioethicists to talk blue sky in safety.
I spent a whole day composing a letter to Cohen, reminding him of our dinner at Princeton in 1997 and asking if I could come along on the cruise as an observer. I thought he might agree if I promised not to write about what happened for a while. And I thought the cruise might be a happier story to write about than the Heywoods.
I called Cohen at St. Barnabas, and after many phone calls involving the two of us, his hospital’s lawyers, my agent, and her lawyer, we settled on the terms of a confidentiality agreement. I promised to write nothing about what I heard on the boat for three years. After that, I could publish whatever I wanted, as long as I did not give away any trade secrets.
I can still see Cohen’s final fax as it came scrolling out of my fax machine. According to the program for the meeting, he and his friends planned to spend their week’s retreat not on a chartered boat, as I had imagined, but on a floating resort, the Galaxy, which is owned and operated by Celebrity Cruise Lines. First came the letterhead of Jacques’s group, “Institute for Reproductive Medicine and Science of St. Barnabas. Gamete and Embryo Research Laboratory.” Then came the title of the conference, “Embryo Cruising in the Galaxy: The Near and Far Future of Assisted Human Reproduction. Venue: Somewhere in the Galaxy.”
One night, not long before the trip, Jamie Heywood stopped by our town in Pennsylvania. He was on his way home from another visit with Jeff Rothstein at Johns Hopkins. My wife and I took Jamie out to dinner at a local restaurant, Paganini. He was floundering, he told us. All that he had going for him was his hope that he could keep people like me lined up in a row and listening to him. He was bootstrapping from nothing but his own faith in his ability to sell, and his faith was failing. I could see that this was true, and at a certain point in the meal I began listening less to his words than to his desperation. He felt as if he were swimming out to sea, he was saying, and the tide was sweeping him farther and farther out, so that he was terrified that if he could not save his brother, he would drown, too.
I had been listening to Jamie talk that way for almost a month. It was hard to hear, and I was beginning to wonder if Jamie had a story at all. Suddenly I wondered if all he would ever have to sell was desperation. Even worse, I wondered if this was all he really wanted—to keep people like me listening. Writers meet sad people like that over the years. As Jamie talked, I had a vision of him drifting farther and farther out into some horrible Never-Neverland, toward which he was trying with all his might to draw me.
Suddenly I felt exhausted. I was falling out of the reporter’s role. I was so overinvolved with Jamie’s hopes and fears that I might have been drowning with him. Trying not to let him notice, I put down my notebook and pen, and picked up my fork.
Deb, of course, had no way to know what was going on inside me. She was meeting Jamie for the first time. All she saw was a handsome wheeler-dealer, and she hoped I would not get involved with him. Still, she heard Jamie speaking with passion and saw me eating my pasta.
“Shouldn’t you be taking notes?” she asked.
Jamie’s eyes and mine met for a moment across the table. I looked down again, but I was sure that he had seen what was going on with me. My face felt hot.
When Jamie stood up from the table and said good-bye before the long drive home—he still had another six hours to Newton—he told me that he would not call again until he had some progress to report.
“Something will happen,” Jamie promised me with a level look, eye to eye. He was speaking directly to the unspoken thoughts he had seen in my face, and without the slightest defensiveness that I could see.
He said, “Nobody who knows my family would doubt that something is going to happen.”
Seventeen
Somewhere in the Galaxy
Veeee-tro!”
Jacques Cohen stood by the piano in the Stratosphere Lounge of the Galaxy with a tiny digital camera, making a big monkey-face grin. His in-vitro fertilization team and his guests stood together in rows on the carpeted steps of the lounge and grinned back. The camera flashed. And so
began our cruise into the future.
The Galaxy was docked in San Juan, preparing for departure. Leaning on the railing of one of the upper decks, Cohen apologized to me urbanely for all his precautions and preliminaries, and the need for a confidentiality agreement. He explained that many of the people on his team had been reluctant to have a writer on board. Their guests from other infertility clinics were even more reluctant. The whole point of the meeting was to talk about the future freely, without having to worry about the press.
They had decided to invite Lee Silver along, but that was an easier decision. Two years had passed since the night we had met at Princeton and Silver had torn up the manuscript of Remaking Eden. Since then, Dolly really had changed Silver’s life. He had quit molecular biology and moved across Princeton’s campus from the Lewis Thomas Laboratory to the Woodrow Wilson School of Public Policy. He was lecturing in dozens of countries. He had spoken at the Vatican, under tight security. He was a frequent guest on Frontline. He was getting death threats. He was now one of the world’s most public advocates for the kind of work that Jacques Cohen and his colleagues did in private.
Silver was at war with bioethicists. He thought they had no understanding of the real world and market forces. That spring a Canadian bioethicist, Margaret Somerville, made a speech urging this work to slow down. Silver sent an angry letter to the editor of Nature titled “Bioethicists Must Come Down to Earth.” He wrote, “Any regular reader of your journal is sure to wonder on what planet Somerville has grown up. It is certainly not one on which science or private industry exist, for if it was she would surely know the lunacy of her proposition.”
The Galaxy has a hugely jutting prow like a beak, which gives the ship the look of a showy yacht enlarged five hundred times. She is a Love Boat of 76,522 tons, 866 feet long, with four diesel engines, four auxiliary engines, bow and stern thrusters, fourteen decks, ten elevators, and a guest capacity of 2,217. In a ship that size, the conference of the Institute for Reproductive Medicine was inconspicuous.
His Brother's Keeper Page 13
