Part 12 (2/2)
”No.”
”He lost it at ninety-nine.”
It sometimes happened that a runner collapsed within sight of the finish. The mind has focused on this image for so long that as soon as it sees it, it a.s.sumes the goal has been met, and shuts off its systems.
Juan gave him an energy gel. He gagged on it, spitting blue fluid onto the ground. Then they ran to Porcupine Creek. Each mile took much longer now. The runners he pa.s.sed now smelled like sulfur.
He could see Silverton far below him, its colorful small buildings in a crooked line, like dominoes placed by a toddler. He had run the equivalent of four marathons, up thirteen peaks. Six hours later than he had intended, Caleb stumbled into town and kissed the white-painted rock at the finish.
When he looked up, June was sprinting toward him.
5.
”We call them orphans,” Janelle explained as she took the exit to Target.
Shane had never encountered a woman who needed to drive as much as his wife. She could not bear a pa.s.senger seat. He had long since accepted this as his lot and sat semicontentedly watching the hills. August had brought storybook pink skies to the bay. Down a particularly steep hill the megastores appeared like coliseums.
”Orphans are conditions that are so rare, that producing drugs for them isn't feasible.”
”Feasible?”
”Profitable.”
”Ah,” Shane nodded.
”Well,” Janelle explained, switching lanes, ”it takes as much money to launch a drug that helps ten million people as a drug that helps ten. Rounds of clinical trials all over the country, lawyers, dealing with the FDA. And if you get past the first round, you do it all over again, and then a second and a third time. It takes a decade, and half a billion dollars, to get a biotech drug approved. And, if you ever get as far as approval, there's Marketing, supply chain, educating doctors. And people wonder why the drugs are expensive.”
She paused, pulled the car aggressively into a tight spot, and looked at him. ”Helixia expects ninety-five percent of our attempts to fail. It's built into our share price. So our successful products need to pay for themselves and all of this research. If they don't, our share price plummets, we have less money for new research, less drugs get discovered.”
Inside, they loaded up two carts full of diapers and wipes, and a makeup remover that Janelle favored. Nicholas hung snugly in his Baby Bjorn; Shane could smell the baby shampoo on his fine black hair.
In one aisle he spied a tired young mother speaking harshly to her fussy baby and tensed. Ever since Nicholas's birth, he felt a new responsibility toward infants. He hesitated there, unsure what he would say if she met his eyes. He caught up with Janelle in the paper towel section.
”Why not produce an orphan drug and charge whatever we have to not lose money? It might be crazy expensive, but we'd have it. And then in a few years, generics could come in cheaper.”
Janelle frowned. ”That would be four or five hundred thousand dollars a dose. Who pays for that? Insurance companies were set up to pay for eighty-dollar antibiotics, not six-figure biomedicines.”
”There are families who would spend that in cash to cure their children.”
Janelle patted his back as they walked slowly toward checkout. ”So medicine for the super-rich only? There's a great idea.”
”Well, 'only super-rich children live' is better to me than 'no children live.'”
”We're just at a place where producing biomedicines for a market this small isn't sustainable. And generics would lose money, so they wouldn't enter this market either. In fifty years things may be better. I know you want to help this baby, but Helixia isn't going to be the way. We need nipple pads.”
While he unpacked their carts at the register, Janelle looked pensive. ”Although. Have you heard of the Orphan Drug Act?”
”I haven't.”
”In the early nineties this same problem you're hitting came to the attention of the government. They came up with a cla.s.sic government solution. They created the Orphan Drug Act.”
”What is that?”
”It allows companies to apply for grants to develop drugs for small populations. It gives them tax incentives and market exclusivity, which is a big deal. Now, this was in the days of a more progressive government.”
”So could Helixia apply for a government grant to develop a drug for alpha-one ant.i.trypsin deficiency?”
”We could. But we wouldn't.”
Nicholas went full-on fussy as he loaded the trunk. Janelle whipped a pacifier from her pocket, and the boy was mollified.
”Why not?”
”Too much risk. The financial incentives are only worth anything if the drug is successful. Which, like I said, ninety-five percent of them aren't.”
Janelle looked at him carefully. ”Baby, you've only been here a month. Even if you'd been at Helixia for twenty years, you'd need a solid case that an orphan drug would pa.s.s trials before you could suggest it.”
Confidently, slamming the trunk, he said, ”I think I have one.”
As Janelle's last two weeks of maternity leave approached, Shane could feel a new stress working its way through her.
Hua had offered to take care of Nicholas, freeing them from a crazed nanny search. But Janelle seemed torn about going back to work. When Shane commented how lucky Nicholas was to be in the care of his grandmother, Janelle had turned unexpectedly harsh.
”My mother comes from a different country, a different way. I don't want her raising Nicholas.”
”We're raising Nicholas, honey.”
”A third of the time,” Janelle had shot back suddenly.
That night, Shane awoke with a start; Nicholas was screaming. He shuffled down the short wood-floored hall in the darkness, and there was his new son, red-faced in his crib. Shane lifted his warm body and sat with him in a small blue rocking chair by the window. Stroking his fine black hair, Shane felt his tiny body shudder and relax against his chest. Where had he obtained the power to soothe just by touch? This must be what Mack taps into, he thought. The trick is, both the person being touched, and the person touching, have to have complete, doubtless faith in the procedure. Perhaps this was why Mack wasn't able to help Lily; she was too young to believe in him. A baby, he understood, only believes in her parents.
He thought sadly of June. What kind of anguish must she feel, listening to Lily's wheezing and coughing, unable to make it go away? A parent without power might be the saddest thing in this world.
He imagined being incapable of helping Nicholas, the pain and rage of it. He felt certain that he would do anything he had to, go anywhere, fight anyone, to save him. Nicholas and Lily began to blend into one. After all, he wondered, how were they different? Genes, spiraling strands of magic. Other than that, not at all. He was responsible for Nicholas's future, and so, he understood, for Lily's as well.
He prayed that the tiny red-blonde baby was sleeping well right now, and he held his son close. He wanted Nicholas to soak this power, this energy, this security into his skin, so that it infused him on some cellular level. And then, humming a berceuse, Shane laid him back in his crib, and Nicholas sank into whatever dreams await a six-week-old boy.
The following morning, Shane walked by Stacey's cubicle, cradling a paper cup of coffee. ”Hey,” he asked, ”got a second?”
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