Stethoscope on base pairs graph“For cancer patients on experimental immunotherapy drugs, it’s been an emotional week.”

So Rebecca Robbins opens her latest article for STAT News, which serves as a sobering reminder of the real patients behind clinical trial data. People who are quite literally putting their lives on the line to test experimental therapies in the hope that they might be in the study for the right unicorn at the right time. 

Earlier this month, Seattle biotech Juno Therapeutics announced that three young leukaemia patients testing one of its treatments had died of swelling in the brain. The trial was briefly halted by the federal regulators, before they concluded that a tweak in the protocol would be enough to start the ball rolling again

It has since emerged that four patients, not the original three, had died during the trial. 

This week, Adam Feuerstein reports for TheStreet that a patient being treated with an experimental gene therapy from Ziopharm Oncology died as a result of intracranial haemorrhage, 15 days after the treatment was injected into his brain. However, Ziopharm do not believe that the treatment lead to the haemorrhage, and are continuing with the trial. 

In her article, Robbins speaks to other cancer patients involved in experimental trials, who describe feeling something like survivor’s guilt on hearing the news of the Juno trial. “In some respects, I feel guilty when I hear of kids that don’t do well or that relapse, because you want everyone to do well. It’s kind of like the survivor complex,” one of her interviewees says.

You can read the full article here.