Whining in Wait—Waiting in Line: Time and the Torment of Trials

Whining in Wait—Waiting in Line: Time and the Torment of Trials

Richard T. Penson, MD, MRCP

Jan 29, 2015

By Tina Atkinson, Lauren Burns, and Richard Penson.  LB sports a perky, punky, quiff of hair that is testimony to the fact that she is a survivor, but never as long as she’d like. No chips on her shoulders, no moss on her street. She is savvy, and racey, and fun. Her hairstyle is gelled and glossed, and threatens rage against inconvenience, incompetence, and everything in between. But, she always manages to moderate it with an impish sense of the ridiculous, and a scurrilous wit. “Nyeeah—never. Can’t be!” is her usual defense. But we are rarely joking, and never joking when it comes to the machinery of enrolling in a clinical trial. You see, LB is a candidate for a really good clinical trial. However, spots on this study are hard to come by, and at the moment, one isn’t available. So, we are waiting.

At almost every phase of clinical trials, the anguish of waiting is front and center: protocol, contract, review, IRB, SRC, activation, amendment, data, analysis, results, publication. But, in phase I trials, there is a fiercer crucible in which we wait: the waiting list.

We are as excited as patients are desperate. The intense collusion of high-stakes medicine and clinical science: gambling on a 1 in 10 chance of loosely defined success. Here, the science is more important than the subject. The participant is subject to the scientific effort, secondary to the system, a commitment sanctioned by the consent that volunteers them, as victim of cancer, to another impossible challenge. As hope is increasingly threatened, the passions around hope intensify, and the shared sense of outrage as another drug fails, and fails her, hurts us almost as much as them. We are a team, vicariously owning each other’s exposure and pain.

There are four or five pages of eligibility. But we are looking good. LB is literally bouncing on the spot, perched right on the edge of the couch, balanced forward on her palms with locked elbows, in the spotlight of neon and nerves. Measurable disease—check; symptoms and signs— check; urine—check; ECG—check; labs? I’m checking, and I don’t believe it. I flip screens and check again. Her LFTs are off, and not just “off,” they are out of the blue, out in the blue yonder crazy. Can’t be. We repeat them, with her fasting and the clock ticking, and “No! you gotta be kidding me, you’re joking, really? No!” They’re 5% worse in two hours. “Ohhhh” a wordless whine is all she can manage.

Viral hepatitis. Not the B or the C sort. A no-name, self-limiting, “something” virus. The hepatologist is no wiser than the oncologist, and two weeks later, we are back again. Same time. Same place. Our only intervention? The quintessentials of supportive care; a liter of saline, and sound advice (Whatever you do, don’t take Tylenol). We’re waiting again.

LB is more cautious this time. Her anticipation is more guarded, and appropriately so. “So, do you want the good news or the bad news?” I say. Her labs are fine, but she’s missed the slot, and one woman’s joy in Chicago, is this woman’s loss in Boston.

When was waiting in line ever a noble task? It smacks of servitude and rationing. We are left, heckled by a certainty that there must be some fat-cat aristocrats of health care being ushered to the top of the queue, someplace, somewhere, right now, chaperoned by navigators who know just how to broker the right advantage.

But, the waiting list is real, and reasonable, and levels the playing field of human frailty. Cancer is a random curse in the complex genetic lottery of life, and illness is a sobering reminder of our shared humanity. We operate a strict, first-come first-served, egalitarian ethic. This is one for all, and all wait for the one at the top of the list at our 7 a.m. Friday morning research meeting.

LB is next, but she’s still waiting. We’re still watching; running the lists. Wishing, and risking, and doing our best; our very best.

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