A congregant read a passage from Philippians. He happened to be a retired doctor, Jamie whispered, and his specialty was ALS.
Let nothing be done through strife or vainglory; but in lowliness of mind let each esteem others better than themselves….
Wherefore, my beloved, as ye have always obeyed, not as in my presence only, but now much more in my absence, work out your own salvation with fear and trembling.
The choir sang another hymn: “O Spirit of the living God…” But suddenly I was full of more feelings than I could stand. I excused myself and hurried outside. It was still a beautiful sunny New England fall morning. I sat in the park across from the church. A blue jay was chuckling. A kid in a white T-shirt walked by on the path kicking a chunk of asphalt, pursuing the diminishing bit. Voices of boys shouted at a game somewhere across the park. Strollers passed me on the path. The trees were all still green, although it was cool enough now for a sweater. The sky was a perfect cloudless blue. I heard the usual rubble of sound of a modern village—an airplane overhead, cars starting, their engines turning over without hesitation. A stout woman in what looked like a blue silk church dress was throwing a stick for her dog.
It felt like a cool summer morning. I walked around the park, past a toddlers’ playground and a field where young men and boys, some shirtless and barefoot, were playing soccer. A ref blew a whistle. The first fallen leaf I saw on a side of the path was curling up like Stephen’s right hand. I sat down on a bench in the sun. It was too much. I had had enough of the edge of medicine. I thought, I’m going back to the Galápagos.
I went back when the service was over. “All of my children—in spite of unbelieving hearts—love the church,” Peggy said as she stepped outside. Stephen’s wedding would be held at the church that February. Peggy and I strolled into the churchyard. She and Wendy were trying to figure out the numbers, she said. They were wondering if they could fit everyone in the Great Hall. Peggy told me that John had renovated the hall when he was senior warden. She showed me where Jamie and Melinda had greeted their wedding guests in the churchyard, and where Stephen had made the toast as best man. That year Peggy had been senior warden, and she had taken on the church garden as her project. It was finished and consecrated in May, and the wedding was in June.
“It’s a lovely spot,” I said.
“It wasn’t lovely when we started.”
Thirty
Focus Hocus Pocus
Back at the house on Mill Street, John Heywood had picked up a pizza from Bertucci’s to go with the bagels we had sliced that morning. Again we sat in the solarium. Everyone joked that I was getting to be a part of the family.
Stephen, Wendy, Jamie, and Melinda were packing for a drive down to New York and Philadelphia that afternoon. Jamie wanted Stephen to see the laboratory that was preparing his gene therapy; and he wanted all of the scientists there to know Stephen.
Stephen had filled a whole tool chest—a small one—with two days’ worth of his GNC vitamins and ibuprofen. Too many pills, he said. He tried to take it all on a full stomach and not with coffee.
“That’s hard to do around here,” I said. “That means, while you’re asleep.” The middle of the night was the only time the Heywoods were not drinking their bottomless cups of coffee.
I was beginning to feel like an honorary Heywood, and Jamie must have heard a special note in my voice. He studied my face. “He’s hooked,” he announced.
“No, I’m not!” I said. “I’m going back to the Galápagos.” But he was right. I was hooked, and Jamie knew it.
Stephen grunted as he got up from his chair for a second bagel. He stumbled and almost tripped. “Sorry,” he said. Whenever he stumbled now he always apologized with a sudden guilty expression. The stumbling did not bother him, but he knew that it horrified his mother and his brother. He was going back to his packing. “Are you gonna bring a razor?” he asked Jamie.
Jamie refused to answer him.
“Bring a razor, Stephen!” Peggy said.
“Bring a toothbrush, Stephen,” Jamie said.
“Quickly—the mouse story,” John Heywood said. He asked Jamie to tell the story one more time. So Jamie explained it all once again. “The mouse is still alive and kicking and happy. It’s lived longer than any ALS mouse in history. Jeff Rothstein now knows that this is the most therapeutic treatment in ALS, period, ever.”
Peggy analyzed the situation. Now, she said, Matt During and his postdoc Dave Paulsen would have to speed up and inject that EAAT2 gene into adult ALS mice and see if they lived longer.
“You want to crochet an ALS pillow for Dave?” Jamie asked her. “I’m totally psyched.”
“I still think the priority is to get those results re-created,” said Stephen.
“Jeff Rothstein’s doing that at Hopkins.” Jamie told Stephen that he had already promised to send money to Rothstein to help speed the work. He said he had never heard Jeff sound so excited.
“He was pretty psyched when I met him,” Peggy said. “He was levitating. I can’t imagine him more excited.”
“No, there’s a big difference, Mom,” Jamie said. “They spend millions on drugs to add days to the life span of ALS mice. This is seven months!”
“What happened to the rest of the mice?” Stephen asked.
“The rest are all dead! They didn’t have the gene!”
Maybe I was wrong, but it was not excitement for Stephen that I heard. It was the exultation of the healer with a potion that thousands were dying for. It was not a bedside or table-side voice. It was the voice of the young hunter almost home with the prize. It was the voice of a man who might soon be able to buy the Honeywell Club. I was happy that Jamie was excited, but I wished I heard less vainglory and more fear and trembling.
Stephen stared straight ahead, poker-faced. He held his right arm cradled protectively in his left, and in his left hand he held one of their mother’s coffee mugs, with the words “I” and “You” and a big red heart between them. He took a sip of coffee.
Jamie was accelerating into warp drive. He would build his foundation on the cure of ALS and go on to cure orphan disease after disease. He told his parents about an idea of Robert Bonazoli’s, setting up a meeting for top pharmaceutical executives and quizzing them: “You did these other orphan diseases in the past. What made the difference there? What can we do to get you to work on ALS? Or the next orphan disease, or the next?”
“That’s a good idea,” John said.
“It’s not on my critical path.”
“Maybe it should be.”
“Don’t distract me.”
Peggy laughed. “Back in the days when they were working in the basement,” she told me, “they had a sign painted on a board down there, ‘Focus Focus Focus.’ A friend changed it to ‘Focus Hocus Pocus,’ and Jamie didn’t notice for a long time.”
“A friend who’s not able to be as gung ho as the others,” Stephen added, in a mordant murmur. “To let go of his doubts.”
He was a great one for one-liners. Wendy called them Stephen’s zingers. I wondered if he was having doubts of his own. I felt afraid for him.
Outside, above the glass ceiling of the solarium, the leaves in the Heywoods’ trees were all still green. They looked as if they might last for months. Stephen himself looked as if he were in the summer of his life, but there was a pallor in his cheek under the black stubble, a hint of winter, a suggestion that, sooner for him than for the rest of us, this season would have to turn.
Jamie went right on talking. He told us that ALS patients sometimes buy ALS mice. “They’re $250 each. Some patients keep them in these little Havahart traps. They feed them vitamins, they feed them bee pollen, they pray for them. And the mice always die at the age of five months. They’re so desperate, these ALS patients!” Jamie said, as if he had forgotten who was sitting next to him. “They’ve just got nothing!”
Thirty-One
Profit
Melinda and Wendy were driving down to New
York in one car, and Stephen and Jamie in another. I joined Stephen and Jamie. I thought I would lie down in the backseat and rest while Jamie drove, but he was still wound up. He said there was something he and I had to talk about right away. He ordered Stephen to get in the backseat.
Jamie pulled onto Route 95 and began to speed south, switching lanes often. By way of preamble he asked if I had read Into Thin Air or A Perfect Storm. He suggested that I think of those books as a model for my article. A Perfect Storm had just the right sense of building opportunity, pressure, tension, and moral crisis.
Now that I was hooked, I noticed, Jamie was beginning to direct me, along with the scientists and their teams. He was all over the story, full of angles and ideas, and he was hard to keep out of it. He kept trying to keep me hooked and motivated.
Jon, I know you want to be objective and detached, but you will make a difference, Jon. Your story will make a difference.
Lines like that are daily fare for most journalists, but they were new to me. The scientists I wrote about had never had their portraits painted and did not want to sit for them. They just let me watch them work. Jamie not only wanted a portrait, he wanted to hold the brush.
“Of course,” I said, “in the end of A Perfect Storm, everyone on the boat drowns.”
Silence from the backseat.
Next Jamie asked me to go over the rules for “off the record” and “on the record.” He had a speech to make but he might not want any of it to go into the article. For now he asked to keep it off the record.
I did not write any of it down, and I will leave the speech off the record, but not the fact that Jamie made it—and made it with an energy that seemed to feed on itself and build hour by hour. He interrupted himself only to argue the route with Stephen in the backseat. Between them, the Heywood brothers seemed to know all the roads between Newton and New York and they sparred at each fork.
Jamie’s speech was about profit. Here, of course, Jamie was wrestling with himself. It was nothing new, only a more passionate and highly caffeinated version of a speech he had been making for some time. He used to call me and anguish over whether he should be setting up a nonprofit organization or a for-profit start-up. I wondered for the hundredth time how much it mattered if Jamie was profit or nonprofit. He was upping the ante, making this a race for a fortune as well as for a life. But after all, I thought, Stephen must have had something like this in mind from the beginning. When he gave Jamie those checks, he had said, “We’re going to need money.”
“I guess Stephen was your first investor,” I said.
“Yes, I guess he was,” Jamie said.
I talked with many people about the money question that fall, trying to get it in perspective. Harold Shapiro, the economist, then head of the National Bioethics Commission and president of Princeton, spoke to me several times about the Heywoods in his office on campus.
“Gosh, after all, he’s not conscripting people,” Shapiro said, when I told him the caliber of the scientists who were working with Jamie. “Nobody’s ordering all these other people to do this. They must find something very attractive here. And the kind of people we’re talking about, it’s not only money. Right? Because they have lots of ways to get money.”
Shapiro’s commission had recently looked at the question of patient consent. I asked him, “This young man has only a short time to live without these therapies. Can he give true consent in a situation this desperate?”
Shapiro said he could not judge without talking with Stephen. “But I’ve known people, unfortunately, who had ALS, and they were perfectly competent to make decisions about their care until very near the end. So I think it’s perfectly plausible that this person may be quite capable of giving consent in the normal sense of the word. He’s very different from the prisoner going to the guillotine, so to speak. He is a free person. The state hasn’t robbed him of his autonomy.
“Still, he’s clearly vulnerable. This is a very complicated case for a number of reasons, and one is that the procedures are all experimental. So even if someone is extremely well informed, the probabilities are very hard to assess.
“But I think I put a lot of stress in my own mind on people’s autonomy, their capacity to live their lives the way they want to.”
What about the money?
“The fact that people make money out of something doesn’t give me a problem,” Shapiro said. “My view is that most people who make money out of things do so because they’ve done something good. Now, if these people make a billion dollars because they cure ALS, I will give a big huge cheer and be very glad they have a billion dollars. I’ll have a little less myself, and so what. If I ever get ALS,” he said, with a chuckle, “I’ll have a cure.”
Shapiro was all for Jamie and Matt as long as they did not cut corners, and got proper approval—and as long as Stephen gave his informed consent.
“He seems quite lucid and reasonable about all of it.”
“I could well imagine he is,” Shapiro said with feeling. “And I wouldn’t want to try in some patronizing way to deprive him of the right to use his life in the way that seems most sensible to him, given his situation. I certainly wouldn’t want to be the one to tell him how to behave.”
On the other hand, one ALS specialist I talked with was enthusiastic about Jamie’s race until I mentioned the money. Then the tone of the conversation changed completely.
“I think it’s a dicey thing. That wouldn’t have been my goal. Seems a little sullied. ALS is such a difficult, sickening thing. And to make money off of it. Oh my God! Oy gevalt! As long as it’s all plowed back into the foundation—as long as Jamie doesn’t benefit, and it’s all to go to Stephen, it’s OK, because Stephen may not be employable. I don’t see a problem with that. But for the whole family to profit! I don’t think I’d want to make money off my brother’s misery. Would you?”
I also talked to Art Caplan, the bioethicist at the University of Pennsylvania, about Jamie’s dilemma. “Makes me very queasy,” Caplan said. “The motive is rescue, and rescue is very commendable. But using rescue as a motivation to fund-raise and then turning it to profit is bothersome, because it takes away the moral rationale that many people would have brought to this in the first place. And you’d be fishing in different ponds. You go to the venture capitalist for profits. You go to the church group and friends and the compassionate civic organizations for rescue. You’re in different places. And it might actually make people feel they’d been duped.”
Caplan thought Jamie had a conflict even without a financial stake in his race. “Should the pace of medical research be determined by people desperately afflicted and their kin? Is that the best way to move the science? My argument would be no. Just as it’s hard to do the best science when you’re heavily invested and have a financial interest in what’s going on, it’s very hard to interpret results when your vision is completely clouded up by love of your subject.
“And there are costs involved. The people who give the money may say, ‘Do what you can, do the research.’ But obviously there’s the ethical question of how to handle it responsibly. If you throw the money out the window on science that isn’t ready to go, then you haven’t necessarily done the best with the gift.
“Medicine doesn’t normally move by trying to do something desperate out of compassion.
“How’d you hook up to these guys?”
James Wilson, the gene therapist, had stock in the biotech company Genovo and so did the University of Pennsylvania. Wilson owned a large stake: thirty percent of Genovo. One year later, Genovo would be bought by Targeted Genetics Corp. of Seattle. (Their Web site says: “We discover, develop and deliver molecular medicines to cure disease.”) Wilson would get 13.5 million dollars in Targeted stock, and his university would get about a million and a half.
Jamie was struggling with not one but two conflicts of interest—one with the gene therapy and one with the stem cells. They both felt to Jamie like hairy conflicts. (The neurovaccine
he was setting aside for the moment—it looked too dangerous to try.)
With the EAAT2 gene therapy, since Jamie was involved with a nonprofit organization, since old women in Grace Church were pressing their tithe money into his hand on Sundays, he should not be able to make money. But what if doing it for profit would make the work go faster?
The stem cell project that he and Matt had started was different. That was for CNScience. They talked about it only surreptitiously around me—they did not want to be scooped by competitors and they did not want me to know things that I might let slip while I made my rounds gathering information for the article. That’s why he and Matt had an air of conspiracy when they talked about stem cells—they leaned forward and spoke cryptically and quietly to each other, rather than help me follow the conversation as they did with EAAT2. They were hatching a business scheme.
I learned the details only later. They were excited about a new technique called KDR that might allow them to pick out just the stem cells they wanted, instead of injecting a great slew of candidate cells to increase the chances of injecting the small number of desirable stem cells.
Without KDR they might have to inject 25 million cells in Stephen’s brain to get enough stem cells in there to do any good. Injecting that many cells might be dangerous. If they used KDR, they would have to inject only three hundred thousand cells. But it would take time to develop KDR.
With stem cells, Jamie figured that he could make money even though he was involved in a nonprofit foundation, because the foundation had nothing to do with it. That idea came purely out of his brainstorming with Matt for CNScience. If the foundation had nothing to do with stem cells, there was no conflict of interest.
His Brother's Keeper Page 26
