This would be true if research funding weren't a zero-sum game. Every dollar spent developing and marketing a drug that doesn't help is a dollar another research team needs badly but doesn't get.

If you still think that kind of false hope doesn't hurt then I sincerely wish you never have to find out otherwise.

Could you explain more what you mean by this?

I guess there’s the fact it made it to Phase III before they canned it meaning more people were hopeful than if action were taken to stop progress sooner.

But, how can progress be made if failure is disallowed because of unknowingly giving people false hope?

It made it to phase III: fine, there was enough evidence in the dubious phase II to perhaps justify a further trial.

But selling it to patients as an ALS therapy in the meantime outside of that trial, when it looked very dubious that it did anything-- that was a little questionable. The FDA overruling their own advisory committee to make this possible looks like a regulatory failure.

I'm not saying to disallow it, but please at least understand that it still hurts.

People take all sorts of stuff they hope will help but probably doesn't. Vitamins, crystals, cups of tea etc. I can't see how they make things much worse.

I'm strongly in favor of experimental drug trials, most of which will fail. "False hope" is a small price to pay.

According to the article, the evidence for this drug was never substantial. We know it doesn't work now, onto the next.

I suppose we can try no new drugs and give nobody any false hope, presumably we'll be better off then?

> This kind of failure seems relatively benign.

You saw the price? $158k per year list price, though it is implied people probably paid less.

It's kind of amazing as the two drugs bought separately are like 1% of that.

It’s not as bad, true. But you have to consider the amount of money wasted in the phase 3 trial, resources which could’ve been put to better uses.

I don't think there were many better hopes out there for ALS. That's why they approved the drug despite weak data supporting it. This outcome is devastating for people with ALS and their families.

As someone with ALS, This drug was prescribed for me by my doctor as equivalent to other ALS medications, namely that they barely slow the progression of the disease. We are talking three to six months of life extension.

You are overselling the effects of this drug harder than the manufacturer did.

It wasn’t the manufacturer that was what convinced the FDA to approve this drug. It was people like you.

Drugs shouldn't be approved on hope. They should be approved on evidence. And there was never any evidence for this one. Just letting it inspire hope was hurting its victims.

You don't have to worry about that, because companies are the ones financing it and if they don't believe the drug have a good chance of working they won't fund it.

Lack of care is harm.

That's why quacks are so infuriating other than money they take (even in social medical systems) time is lost which means disease progression. For many diseases there is now cure but there may drugs to slow it down. The drugs may take a long time to work so years spent on fake crap may mean it's too late for a person to go on a drug.