This whole tragic story has brought out a lot of opinions on the current role of the white house and the FDA, and whether the Burzynskil clinic is pure quackery or a medical miracle. What seems to be missing from the conversation isa discussion of the Aleph-Bais of the FDA- is it needed at all? Sure, many roll their eyes at such a discussion because we’ve become so used to the paternalistic role of government, that to question it seems like some radical hippie-anarchist idea. But perhaps tragic stories like this can make some of us more willing to question some of our basic instincts. Maybe, just maybe, patients and their parents can be trusted to make better decisions than government bureaucrats. Some food for thought from Milton Friedman,
“You’re an FDA official, you have a question of whether to approve or disapprove a new drug. If you approve it and it turns out to be a bad drug like Thalidomide, you’re in the soup, your name is going to be on every front page cost me my job, I get hauled up to Congress to testify. On the other hand if you disapprove it, but it turns out to be good, well then later on you approve it four or five years later, nobody’s going to complain about the fact that you didn’t approve it earlier except those greedy pharmaceutical companies that want make profits at the expense of the public, as everybody will say. So the result is that the pressure on the FDA is always to be late in approving. And there’s enormous evidence that they have caused more deaths by late approvals than they have saved by early approval.”