The cost of caution is not always borne by the cautious

The Washington Examiner carries the account of a young woman who watched a rare disease dismantle her father piece by piece — his future, his strength, finally his presence in her life. She now faces the same diagnosis. The FDA, she argues, may place itself between her and the treatments that could change her outcome. I am not a physician, and I will not pretend to judge the science. But I know something about the economics of risk, and I know this: the person who decides whether to accept a risk and the person who bears the consequence of that decision are not always the same person.

That asymmetry is worth sitting with. A regulator who blocks a treatment faces no personal reckoning if the patient dies waiting. The patient who is denied faces the only reckoning that matters. I do not say regulators act in bad faith — most, I'd wager, act from genuine solicitude. But solicitude without accountability is a dangerous instrument. In my own time I saw what happened when a well-meaning authority decided it knew better than the merchant what goods were safe to trade, or better than the reader what pamphlets were safe to circulate. The road to harm is well-paved with protective intentions.

There is a principle in household economy that applies here with some force: the cost of excessive caution is as real as the cost of recklessness, only quieter. A family that locks its savings in a mattress avoids the risk of a bad banker and guarantees a slow loss to inflation. A regulator that demands ten years of evidence before approving a treatment for a condition that kills in five has made a choice — it has simply arranged that the choice falls on the patient, not on the regulator's ledger.

I will acknowledge what I cannot know. The Washington Examiner piece gives me the plaintiff's side of the case, and inference only beyond that lead. It is possible that the treatments at issue carry genuine dangers the writer does not weigh. Regulators have prevented real catastrophes; thalidomide is the cautionary tale that every generation must relearn. I do not argue for no gate — I argue for a gate whose keepers are answerable to those who stand outside it.

The practical counsel I would offer a working person in this situation is this: find the advocates, not just the doctors. Congress has passed right-to-try legislation (this I note as inference from public record, not from dossier). Patient advocacy organizations have moved faster than agencies in more than one rare-disease fight. The information infrastructure exists — use it. Write to your representatives; they respond more readily than most people believe, especially when the letter is specific, dignified, and free of self-pity. This woman's letter, as published, is all three.

A government that cannot protect its citizens from preventable harm is a failed government. But a government whose protective apparatus becomes the instrument of preventable harm has made exactly the same error by a different path. The daughter who pleads for access to her own treatment is not asking to be freed from all risk. She is asking to be allowed to bear her own risk — which is, when you think on it carefully, the oldest request a free person can make.