[Akinato]

There's a lot of great arguments presented in the article for why we shouldn't go "balls to the wall on experimentation". The drug costs $56k a year, can cause some severe brain bleeding and swelling, and requires regular MRIs which can put quite a strain (and cost) on the system. These are some significant negatives for a drug that hasn't been proven to be effective at all.

[ALittleLight]

I think that makes the case for balls to the wall experimentation. Let whoever is interested and can afford it try this drug. If they have good results, lets cover it with medicaid. If not, try something else.

If we cut out regulations and trials and requirements and so on for what medical treatments people can try, then a bunch of stuff will be tried. Most of it will be bad, but some may show effect and we can iterate on that and get better medicines.

I don't advocate this style for every possible treatment. If we already have good treatments or if the illness isn't too bad, then we definitely should not risk things on trials. However, in this case, it is a disease that kills old people and we don't have any good treatments for it. Why not let people who want to experiment aggressively.

[ethanbond]

One problem is that it’s actually extremely difficult to derive meaningful information from data collected outside of the context of a clinical trial.

So you’d be giving greenlight to tons of fraudsters, exposing people to potentially way more suffering than their baseline disease causes, AND not learning anything from doing so.

[mchusma]

The drug only costs $56k because medicare can't negotiate. The parent was saying the bar for medicare paying for it should be decoupled from the bar for banning it. I agree.

[ethanbond]

Parent is saying very clearly that you should not need FDA approval to sell a drug that claims to treat some specific diseases.