A sad story that speaks for itself.

One Woman’s Experience in Gene Therapy Trial Highlights Weaknesses in the Patient Safety Net
Robb Mohr sat by his wife’s hospital bed two weeks ago, trying to take it all in. His wife, Jolee Mohr, was breathing with the help of a ventilator in a Chicago intensive care unit — her body bloated from internal bleeding, her liver failing — and no one could figure out what was wrong with her.

Robb Mohr had his suspicions. Jolee, 36, had been feeling fine just a few weeks earlier, save for occasional stiffness from her arthritis. Her decline had begun the day after her right knee was injected with an experimental drug made of genetically engineered viruses. Doctors at the hospital shared his concern.

Jolee Mohr died from massive bleeding and organ failure July 24, leaving behind a 5-year-old daughter and a host of questions about why she was recruited into a gene therapy experiment whose chief goal was to test the safety of a novel arthritis treatment that had virtually no chance of helping her.

No one knows yet whether the treatment was to blame. Of the dozens of other volunteers who got the injections, only Mohr suffered anything more than short-lived side effects, said officials at Targeted Genetics Corp., the Seattle company that makes the product. The Food and Drug Administration and the company are investigating.

But a close look at the events leading to Mohr’s death reveals failures in the safety net that is supposed to protect people from the risks of medical experimentation — and in particular, the risks of gene therapy, which for 17 years has struggled in vain to live up to its optimistic name.

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