I knew Jamie was not really five to one. “And how is your brother?”
“My brother is in an amazingly good state of mind. He was never a big planner. He takes things as they come. He flows well. He says, ‘I had a great life, can’t complain.’ He used to paint. He wishes he could do that now, but he can’t.” Jamie told me that Stephen was having the most mundane and absurd problems getting out of bed, into his clothes, and through simple routines in the bathroom. Managing a zipper took ingenuity and improvisation. “That’s what’s on his mind more than anything else,” Jamie said. His brother needed all his problem-solving skills just to get through the day.
“He can’t decide if he wants to settle down or sow wild oats,” Jamie told me. Stephen had found a girlfriend in Boston. Now he was wondering: Should he marry her and buy a house in Newtonville and make a baby? Or should he go out and find the biggest, baddest Harley there ever was, and roar off cross-country one last time? The Heywoods were a tight family, Jamie said, and he felt confident that his brother would decide to stay. “We’re going to buy a house and renovate it. We’re not good at sitting still.
“It’s an extremely desperate patient population,” Jamie went on. “There’s nothing science is offering them but a twenty-four-month death sentence. No options, nothing out there. A ton of drugs, and none of them are worth dick.” He told me that if I decided to follow his story, I could not write anything for a while. “It would be immoral to say anything until this has some hope of working.” But one of the world’s leading ALS researchers was already on board. (He meant Jeffrey Rothstein.) “We could be in business in a month. Evidence may exist in two months, or three months.”
If I did follow the story, Jamie said, he would love to know what the doctors told me about him. “I don’t know if they think I’m nuts,” he said. “They’re spending far more time with me than I would spend with myself. I can’t conceive my role in all this, so I don’t know how they see it. But I haven’t found barriers.” Every time he phoned an ALS researcher, Jamie said, he felt scared. “I get this burning, prepare-to-be-embarrassed feeling. It’s that that’s the barrier. People don’t have the balls to ask the experts questions. But I’m learning.”
Gene therapy, more than any other field of medicine, had the aura of the future about it, the ring of impossible promise, the feeling of the new millennium. On the other hand, I pointed out, it was an extremely controversial procedure. Jamie admitted that regulations could be a problem. “I’ve assumed that if I couldn’t get approval, I’d go to Greece and pay someone there. Or Jamaica, or somewhere. But I think we’ll be able to pull it off. It’s doable,” he said. “Maybe in a few months.”
I asked Jamie if he had seen the movie Lorenzo’s Oil. He had not. “I’m restricting the movies I see at the moment,” he said. “No one’s allowed to die anything other than a violent death. I haven’t been sleeping at all for a month.”
Jamie spoke of burning tension, nausea, rebellious bowels. Then he rebounded again and sounded strong and cheerful.
“One would not choose to get perspective this way,” he said huskily. “I’m walking out of a hundred-thousand-a-year job now. I’m turning away far more. God, I feel so free it’s astounding.”
Jamie spent his last days at the institute cramming. He talked for hours about neurons with Joe Gally and about drug development with Ralph Greenspan. Within a pharmaceutical giant like Merck or Bristol-Myers Squibb, developing a new drug takes five or ten years. Economies of scale prevent the giants from focusing on ALS. With only 25,000 ALS patients in the United States, ALS is an orphan disease. The problem is common enough to serve thousands of academic biologists as their justification for basic research. When they apply for government research grants to study the workings of nerves and muscles, scientists point out that it might help lead to a cure for ALS. But ALS is not common enough for those researchers’ findings to be seized upon by Big Pharma. And biotech companies, which exist to fill that gap, do not do enough to fill it. Translating research into treatment should be straightforward, like translating thought into action, but here the biomedical empire was inept, almost paralyzed.
These diseases really are orphans. The system lets them down. Jamie had long talks with Ralph’s wife Dani, too. She told him that what is missing is not necessarily money for research, but money to move from research into development. Doctors treat patients with drugs and they discover ideas that could lead to new drugs; but they do not do the in-between work that could get their ideas to the market.
That is a gap that Jamie thought he could fill. He saw a niche open and waiting. Maybe his skills were needed here. He could not only cure ALS, he could help to change the landscape. This is where the bridge needed building. He might even make a fortune while he saved his brother’s life. He could imagine moving on from ALS to other orphan diseases, working as a catalyst to help cure disease after disease.
But to move into the open niche within a single year, he would have to solve problems on an extraordinary range of levels, from the molecular to the cellular and anatomical, and upward to the financial and the governmental. His parents were upper middle class, not rich, and he would need to raise a lot of money. He would need powerful collaborators. To inject a new drug into Stephen’s body, he would also need approval from a series of regulatory agencies, all the way up to the Recombinant DNA Advisory Committee (RAC) and the Food and Drug Administration (FDA).
It is very difficult right now,” Melinda wrote in her journal. “Things feel difficult. Jamie is preoccupied with how to go about implementing the ALS therapy, Stephen’s therapy, his idea, money, lawyers on retainer, intellectual property, consensus, expenditures, money, researchers, publication, approval, animal trials, human trials…. I am worried because Jamie is worried. He brings it all home with him in his body, hunched up in his shoulders. I say it won’t help to make decisions, no matter how difficult, with such a wound-up body. And last night I had brandy before going to dance, and Jamie had Chivas at Zorbas, and in general it’s difficult, and he doesn’t want to worry about me on top of everything else, and Dani said this kind of thing can break up relationships, and we disagree—it won’t break ours, but it will splinter it a little, and small repairs will have to be made. I am going to Greece for three weeks…. I’m tired of my own worrying.”
Sometimes in the middle of frantic packing, their minds would go blank. They would drop into what Melinda called “a white blind of mortality.” One or the other of them would drift down onto their futon and curl into a fetal position. Melinda sliced a hunk of bread to eat with cheese and pomegranate jelly and the bread knife cut deep into the tip of her left index finger. Five stitches in the ER.
When Jamie and I talked on the phone, he kept our conversations off the record. He was not sure when, if ever, he could go on the record. And I was busy with book promotion and my parents’ crises in Providence. So neither Jamie nor I was sure what would happen, but we agreed to keep in touch. Back when I was writing Time, Love, Memory, I had worried that readers would not get it: They would think it was a book about flies. Once at a cocktail party of scientists and science writers, I told Stephen Jay Gould what I was doing. He got the point before I had finished my first sentence. “Oh, that’s a good way to do it,” he said. But he also saw the problem. When he was writing Wonderful Life, his bestselling book about the fossils of the Burgess Shale, he worried all the time, he said. “Can I make people care about invertebrates?”
Well, I thought, this would be a story about vertebrates. It might be too sad to write, or to read. But here is a book about heroes with spines. I kept rereading an e-mail that Ralph sent me:
Dear Jon,
I hope it does work out for both Jamie and you to do the story…. I think that one of the things that makes Jamie’s story unusual is the family’s spirit of hope in the face of adversity and, in fact, with the odds overwhelmingly against them. The chances that their idea will work, if they have the opportunity to try it, are very,
very slim. But what they are doing epitomizes the same spirit that Dani, my wife, proselytizes about to cancer patients: Be a thriver, not just a survivor; be an active participant in your treatment; investigate every possible avenue; push the medical system to its limit; and then, no matter what the outcome, you will not have been defeated and will have lived life as fully (if not more so) than most. Jamie’s and his brother’s attitudes are in line with this and it’s a very important message for the world.
Late that February, just before he left the Neurosciences Institute, Jamie and Melinda went over to Ralph’s house and got drunk with Ralph, Dani, and his friend Tim Tully, a neuroscientist who had genetically engineered flies to have photographic memories. They all talked late into the night. Jamie was still not sleeping. By now he had come to believe that every day of his life was worth at least one month to Stephen, because he was convinced that within half a year at least thirty scientists would be working on his EAAT2 project and a few other ideas he was putting together. So for every day that Jamie lost, Stephen lost thirty days of laboratory research.
Ralph tried to comfort Jamie. Don’t think about that.
But Tim Tully shouted him down. No, he’s exactly right! That’s what it is!
Fifteen
Light Up the Cave
A few days later, Jamie and Melinda drove out of San Diego in a rented yellow twenty-four-foot truck. Jamie’s hair was long and shaggy because he had not found time to get it cut. He had a nasty cold. His eyes and nose were red. He had a cold sore on his lip.
“Luckily, the truck couldn’t speed,” Jamie says. “You put your foot all the way down to the floor and went as long as you could.”
Jamie’s cellular phone service was giving him trouble, and each night at the next motel he was on the phone with AT&T. They stopped at a Best Western in Gila Bend, and a Motel 6 outside Oklahoma City, where he managed to hook up to e-mail. Melinda wrote in her journal, “Not being in touch with people on a daily basis may drive him out of his mind.” She tried to keep up his spirits and hers. She wore glamour glasses and a French scarf and waved to other truckers from their cab.
Jamie says, “The country didn’t feel that big, actually, which was surprising because I’d driven across before, and it felt very big before.”
On March 4 the two of them and a few friends carried their boxes into John and Peggy’s house on Mill Street in Newtonville through flurries of snow. That same afternoon, Jamie set up his computer and his phone among their half-opened boxes, using a crummy old door for a desk down in the basement, right outside the door of Stephen’s Cave. Jamie began phoning doctors and neuroscientists in Boston, New York, Philadelphia, and Baltimore while Stephen watched, leaning against the plaster walls with his arms folded across his chest. Melinda noticed that he held his right arm behind his left, hiding and protecting his bad hand. He used his right hand much less often now, though he was still working on his parents’ bathroom, grouting the tiles.
That night, Stephen gave Jamie two checks for five thousand dollars each, and told him to think of what he was doing as a business. He did not expect Jamie to cure him but he thought his brother might be able to slow down his disease—maybe preserve him in the condition of the astrophysicist Stephen Hawking. If this works out and I have to be in a wheelchair for the rest of my life, Stephen told his brother, I’d like a little money. He asked Jamie to use the cash to buy plane tickets, phones, whatever he needed to get into the business of curing ALS. It’s an investment.
Because Jamie and Melinda had hardly begun to unpack, they did not know where to put the checks. Stephen propped them ceremonially on a shelf. He told Melinda that if she was willing, he would also pay her to do his books, and help him keep records of his daily medications. My handwriting sucks, he said.
Jamie felt naked placing calls down in the basement. “Before, I was the Director of Technology Development, calling from the Neurosciences Institute. And all of a sudden, I was just somebody.” On March 8, to boost his confidence, Jamie got his hair cut at last (“a welcome event for all,” says Melinda). On March 9, Jamie and his parents decided to start a foundation. They called it the ALS Therapy Development Foundation, a name that Jamie thought would convey weight and legitimacy to scientists. He felt as if he were still moving horribly slowly, with his foot flooring the gas. “The time-compression element here was unreal,” Jamie remembers. “I would find myself saying, ‘A few months ago we were at this point where we didn’t know what to do,’ and it was really last week. That’s how strange time felt. Literally, we could go through lifetimes in two days.”
On March 22, Jamie and Robert Bonazoli, the first of their friends to quit his job and join Jamie’s crusade, took sledges to the basement walls. Jamie’s father started down the steps when he heard the noise and they waved him back. You don’t want to watch. They expanded the office and lugged in workbenches, installed outlets, extension cords, a printer, phone lines, a copy machine under the old map of Duck.
“That was the worst part for poor Stephen,” Jamie told me. “Your privacy is already violated enough in this process. And then all of a sudden he would wake up in the morning and there would be two or three people working there right outside his bedroom.”
Jamie began driving to laboratories in Boston, New York, Baltimore, courting people in competing laboratories, driving home during the night, and then spending twelve-hour days on the phone in the basement. The basement was “International Headquarters.” Stephen thought Jamie had frightening amounts of energy. After a twenty-hour day, he was ready at 9:30 in the morning to do more work.
On March 25, Jamie made his first visit to Jeff Rothstein’s lab at Johns Hopkins to talk about EAAT2. He drove home elated. Not only did Rothstein give Jamie several hours, but he walked him out of his office and down the hall to his next appointment. Jamie was thrilled, and he was delighted to have such good news. “That he would spend the time to do that!” Jamie told me. “He walked me all the way to the next lab. You go in and you don’t know who you are or where you stand. And when someone makes a gesture like that—”
Another day a stranger called Jamie to ask him about his project. Jamie answered a few questions patiently but he had missed the name.
I’m sorry, who is this?
You want to talk to me.
It was Alexander d’Arbeloff, the chairman of the MIT Corporation, and founder and former chairman of Teradyne. D’Arbeloff is one of the most respected businessmen in Boston.
D’Arbeloff told Jamie to come by his office, and he gave him a few hours, too. He asked the kinds of questions that a tough, experienced manager asks when he is deciding whether to hire you or throw you out the window. Again and again he reminded Jamie that major drug companies take five or ten years to bring a drug to market. Jamie felt glum. But as he got up to go, d’Arbeloff said, I’ll give you a hundred thousand dollars. It was the first of a series of long afternoons from which Jamie returned to the basement alternately uplifted and downcast. D’Arbeloff was even more intense and high-powered than Jamie, and he, too, did not have a doctorate. He was a self-made man. If Jamie had lost his sense of power when he quit the institute, he was regaining it now. “But this time it was internal,” Jamie says.
Jamie went back to Grace Church. Stephen had always been a cheerful unbeliever and he was not about to change now, but Jamie began going with his parents every Sunday morning. He was comforted to see the bells of the church sitting out on display in the churchyard while the tower was being repaired. He had learned how to play those bells as a boy. Jamie told the new pastor that he remembered how he and his brothers used to run around in the great hall and slide on the floor.
“You’ll be happy to know the children still do,” the pastor said.
Again and again Jamie drove all day and came home late at night. He would walk through the backyard under the tall trees and in the back door. There were always projects going in the Heywoods’ yard, and he might pick up an ax, a hammer, or a saw from th
e yard in the moonlight and lean it against the side of the back porch on his way in. Sometimes his mother and father waited up for him in the solarium, sleepy and warm, John in his pajamas, Peggy in her nightgown.
“We are lucky to have such a family, people tell me that all the time,” Peggy says. “Well, we are lucky, but not as lucky as we could be, I suppose.”
At this point I had not met Jamie and Stephen. I was about to meet Jamie; I would not meet Stephen until later. When I asked him about this time, Stephen told me that he could not remember how Jamie had broached the news about his project. “He started talking about it very hesitantly,” Stephen said. “ ‘Well, what do you think about this? What would you think if I did that?’ ” The scale of Jamie’s plans shocked Stephen, but he tried to keep his doubts to himself, and the more he listened the more he saw the point. The scientific knowledge to cure ALS might already exist, but it might not be applied in time to help him—not without an impassioned entrepreneur like Jamie.
When Jamie told Stephen about his gene therapy idea, Stephen wanted to say, Well, someone would have thought of it already. But Jamie explained that scientists were not rushing to try out their latest clues in the lab to save Stephen—even if it was an obvious idea, as straight-ahead and commonsensical as fixing a broken pump. “Jamie made it very clear that researchers don’t work that way,” Stephen told me. “There’s such a lack of communication, it doesn’t even matter if someone’s already thought of it. It’s irrelevant if ten times someone’s already thought of Jamie’s therapy. If nothing got put into motion, it doesn’t exist.”
I asked Stephen if he could tell me exactly how he had felt as he listened to Jamie describe his grand plan.
His Brother's Keeper Page 12