Sensing Light (26 page)

VII

G
WEN AND
N
ADINE LEFT
for the ICU when the conference ended. Kevin and Herb headed toward their monthly division chiefs meeting with Ray.

“How's Marco?” Herb asked, “And how are you holding up?”

“He's the same. I'm handling it.”

“Is there anything I can do to help?”

Kevin didn't act on his impulse to decline the offer. Self-sufficiency isn't always a virtue, he thought. A veteran Shanti counselor had given him this advice after Marco's first hospitalization.

“If you're feeling guilty when friends help you out,” the counselor had said, “you should think about how much pleasure they get from your graciously accepting their generosity. And the gift doesn't have to be paid back to the giver. You can pass it on to someone else later.”

Kevin checked his calendar.

“You busy Wednesday evening?”

“I don't have plans. What can I do?”

“Come over to my place. We can talk.”

“I'll bring dinner.”

“That would be great!”

Kevin steered Herb to a different topic. He wanted feedback on Karen Packard, another junior physician he had recruited right out of training. Kevin was using one of his grants to cover her salary so she could work with Herb on Pneumocystis trials.

“She's terrific!” said Herb. “Bright, enthusiastic. Best of all, she's a very effective problem solver. I wish I could find pulmonary fellows with that kind of drive and ability. So, Kevin…How do you do it?”

“Do what?”

“Attract such great people to work with you?”

“I don't,” Kevin stalled, unable to think of an answer that wouldn't sound flip or pretentious.

“Yes, you do, and I bet you know how you do it.”

“It's not me, Herb. It's the work that attracts good people.”

“Right, it has nothing to do with you.”

“Speaking of Karen, are your studies on track?”

“Definitely. And you know those case reports from Canada and New York about Pneumocystis patients improving after being given high-dose steroids?”

Kevin nodded.

“Well, a Southern California consortium is organizing a multicenter, randomized trial. They want City Hospital to be a site. I'm having Karen represent us on the conference calls.”

“Good!”

“By the way, I understand she shares an office with David. How are they getting along? They're both quite ambitious.”

“It doesn't seem to be a problem. I've given them completely non-overlapping areas to explore.”

“But putting them in the same office where they see each other's every success. That's a goad to keep them driven, isn't it?”

“Gosh, it might be,” said Kevin feigning naiveté.

Surprised by how quickly Kevin had grown from a neophyte researcher into a wily mentor, Herb laughed.

VIII

F
ROM THE DIVISION CHIEF'S
meeting, Kevin went straight to a conference room above the library. He was glad to find only twenty people inside. He had faced larger hostile groups and not just AIDS activists, also those on the other side who demanded exclusion of HIV-infected children from public schools or mandatory HIV screening of anyone applying for a government job.

Kevin recognized many of the men from previous meetings. He had even established some rapport with a few of them. His temper was under control until he saw the moderator was Rebecca Wolman.

“Wonderful,” he seethed through clenched teeth.

Rebecca looked at her watch and said, “Can we start, now that Dr. Bartholomew is here?”

The room hushed. All the attendees crossed their arms.

“We asked for this meeting,” she said, “because it's been three months since the AZT trial was stopped—
terminated
because an independent data and safety monitoring board concluded it would be
unethical
to deprive the people on placebo from receiving a life-prolonging medication. We've read about how kind Burroughs Wellcome is being, how accommodating the FDA has suddenly become, how nicely they're working together to make AZT available to all those poor, suffering AIDS patients.”

She raised her voice and lowered her pitch like an alto launching into an aria.

“But it's been three months, and nothing has happened. Ten people with AIDS are dying
every day
in this country!”

“What the fuck is going on?” she yelled at Kevin, “And what are
you
doing about it?”

Her audience pounded their fists on the table.

“AZT. Now!” they chanted. “AZT. Now!”

Unruffled, Kevin held up a hand.

“If we're going to have a dialogue, you have to let me talk too.”

They kept on chanting.

“Or I'm leaving.”

He took two steps toward the door. There was quiet.

How infantile, he thought.

Being as conciliatory as he could, Kevin said, “Can I give you some information about the trial that hasn't been in the press?”

Taking their cynical expressions as acquiescence, he distributed copies of his handout. He explained the study's limitations—its short duration before all those who were assigned to get placebo were switched to AZT, the restrictive entry criteria which made generalizing results to other AIDS patients problematic. He also described the severe anemia, nausea, and muscle damage that occurred much more frequently in those who had received AZT during the randomized phase of the trial.

He was tempted to mention Marco's situation as a personal example of where the harm would exceed the benefit. Then he recalled Gwen telling him that when dealing with angry people who perceive they have less power than you—whether patients, employees, or activists—it doesn't help to bring up your own personal issues. They won't be sympathetic.

“I really do get it. People with AIDS are dying,” Kevin concluded, “and for some of them, AZT is likely to improve survival and quality of life in the short term. But I worry that wide release of the drug before definitive studies are done could turn out to be a terrible mistake. What if the outcome of taking the drug for longer than a few months is worse than taking nothing?”

“That's right,” Rebecca retorted. “We don't know what the long term safety of AZT is, but it's clearly an immediate stay of execution for anyone who's had Pneumocystis. Burroughs Wellcome promised to make AZT available in October. It's going to be January at the earliest, if then.”

“That's out of my control, Rebecca.”

“You were an investigator in the trial. If you publicly put pressure on the company, if you accuse them in front of TV cameras and say delaying
distribution of AZT is genocide, they'll have to respond. It will disgrace them in a way we can't.”

“Rebecca, I collaborated with BW scientists in designing the trial. I am not going to make an accusation like that. Anyway, BW can't do this alone, certainly not until the FDA gives them a green light. And the FDA is greasing the wheels for AZT approval to happen at warp speed. There has never been a drug for any disease that will get out to dying people this fast and on the basis of such little evidence.

“You're also ignoring safety. The company and the FDA have to work out how to monitor the toxicity of long-term treatment with AZT. If people start dropping dead from toxicity, compassionate-use distribution will look like a greedy marketing ploy by the company and negligence by the FDA. And that would have a deadening effect on development of new drugs. Try to see the bigger picture.”

“Kevin, the bigger picture is that this is a holocaust. You're a fucking stooge for a Nazi pharmaceutical company. We're done here.”

As the group got up to leave, Kevin wanted to scream. My lover is dying of AIDS. What gives you the moral authority to demonize me?

Just thinking those words was enough catharsis for him to stay focused on salvaging the meeting. As the men gathered their coats and umbrellas, Kevin saw that underneath the anger, they were dispirited.

“Rebecca,” he projected in his most basso voice, “Is this how you want to end things? What have you gained here?”

That caught their attention. Everyone stopped. They looked back and forth between the antagonists.

“Our mission at City Hospital is to give the best treatment to people with AIDS. Yours is to empower them. Shouldn't we be working together? Wouldn't that be the best thing for folks who have this disease?”

Kevin slowly looked around the room, systematically making eye contact with each person. Some were weighing his proposal. The others were already nodding in agreement.

Rebecca, not oblivious to the fact that she was quickly becoming a minority of one, said, “OK. We can talk about that.”

Kevin offered his hand. The men clapped as she shook it.

IX

H
ERB RETURNED TO HIS
office from the chief's meeting and paged Karen Packard. Talking to Kevin had reminded him to advise her how to stick up for their interests on the conference call with their Southern California collaborators. Karen arrived moments later. As tall as Herb, she had a taut, athletic build and straight brown hair hanging down her back.

“Don't let them railroad you,” he said. “They'll want you to do all the work while they get all the credit. Make sure there's an up-front agreement about authorship. Otherwise, they may pull a fast one when their statistician drafts the manuscript.”

She gave him a self-assured smile.

“I've never had a problem with people running over me.”

Herb chuckled. He knew Karen had played college basketball before medical school. After she left, he reflected on how confident this young woman was. Cecilia had been confident at that age. She was even more so now, as were many middle-aged women he worked with, women like Gwen. But Karen was taking it to a new level.

Thinking of Gwen made him uneasy. Had he come across dogmatic and insensitive at the noon conference? Would she hold a grudge against him? Their connection when Laurie Hampton tested positive hadn't lasted long. Their subsequent encounters were awkward. He guessed that what she had divulged was too threatening for her to want any deeper friendship to develop. He had to admit his own confession had made him cautious too, which was unfortunate because he liked and respected her. Gwen was different from anyone else he knew well. Decidedly more unconventional, and that was appealing. It would be nice to have someone at work he could confide in besides Kevin.

Herb tapped on Gwen's half-open office door.

“Come in,” she said.

She was writing on a yellow legal pad.

“What happened with Ms. Diaz?”

Gwen frowned.

“I think she understood what we were telling her, how unlikely it is she'll ever breathe on her own again. Her brother was there. She kept looking to him, but he didn't want to influence her decision. Then she shut down. Nothing was resolved.”

He nodded solicitously.

“Gwen, if you choose aggressive life support for Ms. Diaz, that decides it. She's your patient.”

Gwen sighed and said, “I know letting it end is the humane thing to do. But if we were to buy enough time for her kids to get here while she's still conscious…I can't discard that possibility.”

“I wouldn't either. Sorry, I didn't mean to sound callous earlier.”

“Herb, you're not callous. I know that.”

“There's no DNR order in the chart, and there won't be until you sign one. OK?”

“Thanks.”

Gwen glanced down at her yellow pad. Herb sensed she wasn't angry at him now but wanted to end the conversation. He slipped out of the office without saying goodbye.

Back in the ICU, Herb was washing his hands at the sink. He saw Laurie Hampton seated on a stool, legs crossed, making notes on a heart monitor printout.

She seems content, he thought. Has it really been two years since Gwen told me about her antibody result?

Laurie had never told him, and he had never said anything that could remotely imply he knew. He had tried a couple of open-ended questions, giving her the opportunity to talk about it. She hadn't disclosed.

She looks OK. Maybe she's one of the lucky—what Kevin calls healthy, long-term, non-progressors. And the accident was five years ago.

That was pleasant to contemplate until he began wondering how she handled the uncertainty. For him, it would be a rodent inside his belly gnawing constantly.

Laurie saw Herb looking at her.

“Got a minute?” she asked.

“Sure.”

“I've been working on a quality assurance project, comparing our policies for invasive procedures to what the residents document in the chart after they've put in an arterial line or central venous catheter. I have some data.”

“I've got time now.”

“Great. I'll get my file.”

Businesslike, Laurie described the problems she'd unearthed. Nothing too alarming, he thought, which was her assessment as well.

“We could do better,” she said. “But nobody's going to find their name in the newspaper.”

“That's good to hear. Thanks for the update.”

He reached for her arm. His fingertips grazed her sleeve. She was closing her file and didn't notice.

An hour after Herb left the ICU, Karen Packard came in to check on a newly admitted patient.

Laurie approached her and signaled toward the break room with her eyes.

“When you've got a moment,” she said.

Karen nodded.

As soon as the two women were seated, Karen asked, “Did she repeat your T cell count?”

“Yeah,” Laurie replied darkly. “It was under four hundred the second time, too. They'd always been normal before.”

“Does Tanya know?”

“I haven't told her yet. I'd like to have a plan for what I'm going to do first.”

Karen looked puzzled.

“About the trial. This means I'll be eligible when it opens. Stanford will be a site, so I could enroll there without anyone here knowing I'm infected.”

“Oh, right. God, that's a tough one. AZT or placebo, maybe for years before anyone knows if it helps.”

“Yeah, tough decisionsville,” Laurie muttered.

“You should talk to Herb or Kevin Bartholomew. They both have lots more clinical trials experience than me.”

Laurie raised an eyebrow.

“You've got to be kidding. Besides you and Gwen Howard, nobody else here knows. And I don't want anybody else to know. I do not need people at work pitying me.”

“Herb won't tell anyone. He's a good guy. You said you trusted him.”

“Not that far.”

“He's been doing randomized trials for longer than anyone here. He could look over the protocol, answer your questions. He'd be a terrific resource. You know he'd love to help you.”

“Herb is a very nice person. I'm sure he's full of good intentions. But he's way too opaque for me to share something like this. I can't tell what he's really feeling.”

Laurie looked back at her coffee. Her left leg bounced nervously.

“I'll think about it.”