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Comment by sandworm101 | Hacker News Reader

It's great having friends in the right places. Why in these stories is the patient always a researcher or married to a researcher in the field? People die of infections like this every day in every hospital. If i demand of my dieing grandmother's doctor "phone the CDC and let's try some phages" i'd be laughed out of the room. One is left with the distinct impression that, end of life or not, those in the club are provided extreem options the rest of us are not. (See many of the ebola stories.) They may be totally experimental but facing the end most would take experimental over nothing.

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You do not really understand what "experimental treatment" means without doing medical research. In general, it means it is extremely more likely to acutely hurt more than it helps you. I mean like million to one odds.

But for some reason doctors and researchers are viewed as understanding that better than the public. But they're still happy to tell a wife that they might want to call a priest for her husband in a comma...

>"for some reason doctors and researchers are viewed as understanding that better than the public"

Because they have no excuse, a jury would agree they should've known better.

Things might be considerably different if people weren't so litigious when these thing go the wrong way. I can understand doctors being extremely hesitant to suggest experimental therapy if it means they might be bankrupted and unable to work.

"But for some reason doctors and researchers are viewed as understanding that better than the public."

Wait: you're arguing that doctors and researchers don't understand the risks of experimental treatments better than the general public?

Why would you think that?

Do you have a reference for the 1 million number?

No, in my estimation I was being conservative and it is probably much higher though.

Edit: It is much easier to break things you don't understand than fix them.

I think you are overestimating how good conventional medical treatment is. Things like phage treatment are far more likely to help than harm. The reasons they don't happen are much closer to too much hassle, don't have time to bother.

I never made a comparison to conventional (ie, non-experimental) treatments. One thing the FDA does do ok is filter out things that cause lots of acute harm.

Concierge medicine, VIP wards, liquid biopsies with annuals, transplant priority, there are many examples where resources or connections grant access to the upper tier of the medical system.

Thats a little different. That is money, and rarely generates miracle cure stories. This is more of the medical club where doctors and nurses rapidly recieve treatments not availible to outsiders at any price. Im reminded of a heroic effort to save a single local house from a forest fire, water bombers and everything for an empty property in the woods. It was an ex-firechief's vacation/retirement home. Some special treatment cannot be bought.

> Why in these stories is the patient always a researcher or married to a researcher in the field?

Because, usually, listening to a patient's great ideas is a waste of time. This of course is not the case, when the patient has provable knowledge that the doctors have to admit might surpass their own knowledge.

> [treatments] be totally experimental but facing the end most would take experimental over nothing.

Sure, except for that the relatives might sue a doctor after a patient's death. In court you have a much stronger position when the patient obviously had the knowledge to really understand the risks of some treatment.

Last but not least: Experimental therapies are much, much more expensive than standardized ones. You basically have to check all parameters permanently while with standardized therapies you just follow a protocol that dictates what to look out for.

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