Sensing Light

by Mark A. Jacobson

  “I won’t tell anyone.”

  “I know you won’t. It’s because I really don’t want people feeling sorry for me.”

  She nodded sympathetically.

  “See what I mean.”

  Gwen opened her mouth in horror and clasped her hand over it.

  “It’s OK. I can take sympathy from you and my sister but no one else.”

  “Oh, Kevin,” she wept.

  Gwen was appalled she couldn’t stop crying. She focused on how deeply he must trust her to confide this.

  I can’t let him down, she thought. If I’d been infected from the needle-stick, I’d have gone to him instantly, certain he’d understand what I was going through. I owe him the same. No more selfish tears.

  “I think you know that with T cells this high I may never get sick.”

  She tried to smile.

  “And if I do, I’ll start AZT. It’s not the end of the world, Gwen.”

  “I know. I know.”

  Kevin sat on her lap and hugged her.

  “You gonna be OK?” he asked.

  Her lips trembled.

  “I can’t lose you,” she wailed.

  Two more sobs and she regained control.

  Kevin hugged her again.

  He’s lost weight, she realized. She touched his flat belly and was dumbstruck she hadn’t noticed it before.

  “It feels really good to have people who care this much about me. Wish it didn’t have to hurt.”

  “Good God, Kevin, the last thing you need to be worry about is my feelings.”

  “Be strong for me, OK?”

  She nodded.

  Arising, he said, “I’m late for a meeting. We’ll talk soon.”

  She grasped his arm and reluctantly let go.

  VI

  GWEN HAD CALMED DOWN by the time noon conference began. Disappointed in herself, she wanted to try again at being supportive, but she couldn’t talk to Kevin here. He was sitting between Herb and David. The three of them, along with all the AIDS program nurses and social workers, were looking expectantly at her.

  Miranda Diaz, Gwen remembered. The case to be presented was her patient. She signaled the intern taking care of Ms. Diaz in the ICU to start.

  Ms. Diaz had been diagnosed with retinitis in September and responded well to the standard anti-cytomegalovirus treatment, ganciclovir, until a recent exam showed new lesions in both eyes. David increased her drug infusions from once to twice a day. Then she became hoarse and coughed violently whenever attempting to eat or drink. David had seen a case like this at UCLA in which cytomegalovirus destroyed the laryngeal nerve of an AIDS patient, paralyzing his vocal cords. He hospitalized Ms. Diaz, ordered higher doses of ganciclovir, and asked an ear-nose-and-throat consultant to see her. The specialist confirmed her vocal cords were limp and couldn’t prevent aspiration of fluids, even oral secretions, into her lungs. She soon became short of breath and febrile, signs of pneumonia. Her blood oxygen plummeted, so she was put on a ventilator. Her prognosis was grim.

  Gwen already knew these details. Her mind began wandering. She wouldn’t allow herself to think about Kevin. Instead, she watched David’s reactions to the intern’s presentation. She wondered about his priorities. Was he more concerned about Ms. Diaz or how the discussion would make him look as the hospital’s new cytomegalovirus expert?

  Gwen had been suspicious of David before she met him. The UCLA medical center where he had trained received far more media attention than City Hospital did as the AIDS epidemic was unfolding. Most of it was showered on David’s mentor, Knowleson. It had been difficult not to be envious of the Hollywood involvement and money he was able to harness while she and Kevin were working so hard with so little at City Hospital. At first, the university ignored them. Apart from space and salaries for two nurses and a clerk, which the city’s public health department provided, they had no resources until Kevin’s NIH funding soared. After crossing the million-dollars-a year threshold, the university gave them modest administrative support. Donations trickled in from wealthy gays—enough money for them to expand services and hire more staff. Then came more grants, more donations, more university support, which meant they were ripe to be exploited by an ambitious junior investigator who wanted to become famous fast. Gwen had suspected Knowleson’s articulate, politically correct speeches were principally aimed at getting his name in print and his face on television. Now, she couldn’t help but transfer that mistrust to David.

  The intern was concluding. Gwen started to listen again.

  “Ms. Diaz’s pneumonia and vocal cord function haven’t improved despite antibiotics and pushing the ganciclovir dose higher. She’s also a bit confused today. Could the CMV infection be spreading to her brain?”

  Herb asked, “If this woman is developing cytomegalovirus encephalitis on supra-maximal doses of ganciclovir, what are her chances of surviving? Isn’t CMV encephalitis always a terminal event?”

  Everyone looked at David.

  “She hasn’t been on the high dose that long.” David said cautiously.

  Herb pressed him.

  “What exactly is her prognosis?”

  “It’s hard to say. There are ten or so case reports of CMV encephalitis in the literature, only one of laryngeal nerve paralysis. They all died within weeks, but none were getting this aggressive ganciclovir treatment.”

  David looked at Gwen. She guessed he needed some backing to go out on a limb. She gave him a barely perceptible nod.

  “I think it’s too soon to throw in the towel,” he declared. “Maybe I could get her foscarnet on a compassionate-use basis…though that would take a few days to arrange… uh, maybe longer.”

  “Compassionate-use,” scoffed Herb. “Compassion would be considering that extending her life is prolonging her misery, given her chances of even short-term survival are so remote.”

  “Wait a second,” Gwen interjected. “She understood the procedure and consented to being intubated. The ICU attending who explained it to her yesterday is fluent in Spanish. He offered her the option of morphine and a peaceful death. She chose the ventilator.”

  “Gwen, is this really what she wants?”

  Irate, she answered, “Ms. Diaz has been my clinic patient for a year. She knows what her prognosis is, and she’s told me several times her biggest priority is to see her children again before she dies.”

  Herb turned to Nadine, the social worker, and asked, “What’s happening with that?”

  “They’re waiting for visas. Which could take days, weeks, months to resolve. Who knows?”

  While everyone else mulled over that uncertainty, Gwen struggled to comprehend why Herb was questioning her judgment. She had made an irrefutable argument, based on the patient’s wishes, something he had to respect. Was he dismissing it?

  She thought of their mutual confessions two years ago. At the time, it seemed they were becoming close friends. Did he back off, or was it me? Do I have a problem trusting men at work? David, for instance? He’d be a prime example. But what about Kevin? No, that’s different. Another possibility entered her mind. Her clinical judgment had rarely been challenged since her appointment to the City Hospital attending staff. Am I so used to having the last word that I can’t tolerate opposition?

  Kevin broke the silence.

  “I’m hearing it’s a very long shot that what we’re doing will make a difference. On the other hand, she did opt for aggressive treatment. I think we need to determine how informed her decision is in light of what David just told us. Let’s make sure she understands being on a ventilator is probably futile.

  “Nadine, you’re fluent in Spanish. You talked to her this morning. Is she still capable of understanding this and deciding whether she wants to quit or not?”

  “She was a couple of hours ago.”

  “Gwen should be there. If the vent is what she wants, we should do whatever we can to keep her alive. And it doesn’t have to be fixed in stone. We can revisit the decision daily.”


  “All right,” said Herb. “But if she deteriorates to the point where she can’t decide, I’m going to ask the Ethics Committee to get involved.”

  He asked Gwen, “Are you OK with that?”

  “Of course I am! If she worsens on high-dose ganciclovir, then it’s obviously hopeless. You won’t need to get the Ethics Committee involved. I’ll turn off the power switch myself.”

  Getting what she wanted didn’t mollify Gwen. Herb’s attitude reminded her of a sub-specialist at City Hospital who treated her as if he were a prosecutor and she a public defender representing a client charged with impersonating a critically ill patient. In fact, she was doing her job, advocating for someone under her care.

  No, no, she reproached herself. Herb isn’t like that. I was totally out of line. What is wrong with me?

  VII

  GWEN AND NADINE 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

  FROM 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

  HERB 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.”