re: Would you save a dying kid?

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Would you save a dying kid?

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Who wouldn't?

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I do find it odd they didn't give it for free at the onset since it is "experimental" and would give them great data I would think.

But I don't know the first thing that goes into those types of decisions.

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Good point. There's a lot we don't know about why they were reluctant t let this kid take this medicine.

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Ya, bad situation. I do find it odd they didn't give it for free at the onset since it is "experimental" and would give them great data I would think. But I don't know the first thing that goes into those types of decisions.

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These clinical trials are meticulously managed to collect a range of data for the FDA. The problem is that this kids is pretty far gone and his odds are quite low even with the medicine.

Even with "compassionate use", the FDA makes no distinction with the data. If this kid, who is outside of the clinical control of the company, dies -- even if it is of no fault of the drug -- his death has to be included in the data.

The FDA takes death very seriously (as they should), so it can possibly delay the release of the drug for years -- keeping it out of the hands of large numbers of people who need it. Thousands who could've been treated could theoretically die during the delay -- a delay that was caused because a dying child was administered the medicine due to outside pressure.

It's a tough issue. Even compassionate use typically has strict guidelines. The drug companies want to make their money and the sick want their medicine, but the FDA controls the availability -- and they are very rigid.