Cancer Horror Stories

JESSE GELSINGER: SACRIFICED TO GREED?

IGNORING THE RULES WITH FATAL CONSEQUENCES

From the moment Jesse heard about the OTC study, he wanted to volunteer. But, before Jesse could be accepted, he had to be tested. The study's rules required that test subjects had a blood-ammonia level below 75 micromoles per liter, and that they were otherwise in good health. Initial tests conducted in Philadelphia on his eighteenth birthday showed Jesse's blood -ammonia level was 47, well within the study limits. Excited now, he flew home and waited for the call to come back and be infused with the adenovirus.

Jesse arrived at the University of Pennsylvania hospital on September 12,1999, to begin the treatment. He was assured that other patients had received the same dose he was going to get with no serious complications. But, when Jesse's blood was routinely tested prior to the infusion, his blood-ammonia level was 91, higher than the study rules permit.

The doctors overseeing the trial decided to ignore the rules and proceeded with the infusion. Initially, it appeared that the treatment was working. Jesse's blood-ammonia level fell to 60. Jesse also felt nauseous and had a high fever, but the doctors were not concerned. Other patients taking the treatment had the same reaction.

Roughly twenty hours into the experiment, on the morning of September 14, it was apparent that something was seriously wrong. Jesse was showing signs of liver toxicity. His skin had the yellowish hue that indicated he had developed jaundice. Doctors ordered a blood test of Jesse's bilirubin, a byproduct of the breakdown of red blood cells. The test confirmed their worst fears. Jesse's bilirubin was four times normal. This meant that either Jesse's liver was failing, or that his red blood cells were breaking down faster than his liver could metabolize them. The latter condition was the same type of clotting disorder that had killed the monkeys in the earlier experiments.

By the afternoon of the 14th, he had slipped into a coma. As the evening advanced, things got progressively worse. Although Jesse's blood-ammonia level had initially dropped, it was spiking out of control now. By 11:30 it had reached 393 micromoles per liter (eleven times the normal level). His doctors decided to put him on a kidney dialysis machine. That helped some, but not enough, because now, other things were going wrong.

Jesse was put on a ventilator, and given a drug to relax his lungs. Even at 100 percent oxygen though, he wasn't getting enough. A liver transplant was considered, but Jesse wasn't a good candidate. Desperate to keep oxygen flowing to Jesse's brain, the doctors decided to take a radical step: Extracorporeal membrane oxygenation or ECMO. This was a procedure where an external mechanical lung is used to remove carbon dioxide from the blood and add oxygen. It had only been used on about a thousand patients, and half had died.

By September 16th, Jesse was slipping into a cascading multiple organ failure. By Friday morning, Jesse was brain dead. His father called for a chaplain. After a brief service, Jesse's life support was removed and he died.

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Contact Kathleen Deoul, Media Matters
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