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Comment by yawboakye | Hacker News Reader

> Marketing unproven cures for bronchitis

This is as Western as our mainstream thinking (and cockiness) gets. You know, evidence can only come from a lab with a prescribed setup, inspected and certified by my outlandishly smart scientists. And oh until then umm can we -force- everybody to not use it? I’m African and many of the medicines I’ve consumed and been cured with are unproven according whatever criteria you’d use. Sometimes it has been administered by a shaman following family tradition.

It’s a sad state of affairs that somehow we’re certain we have discovered the single method of finding the single point truth and all other methods are wrong. Also considered certainly wrong is the idea that truth isn’t a point value but a spectrum and based on its utility to our short life, we lie peacefully in the spectrum or even out of it.

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Drugs used to be less regulated until 1938, when tainted medication lead to over a hundred deaths: https://en.m.wikipedia.org/wiki/Elixir_sulfanilamide

Why not just let the natural selection play out

I have a chronic condition. Medical community has been one of the biggest problems in finding treatment.

Multiple years to work through a checklist of tests and medications to try.

Flat out can’t get prescriptions for basic things like antibiotics.

Even when a round of it always results in a couple months of dramatic symptom relief.

At this point massive deregulation would be best gift ever.

Generally speaking, antibiotics should be more controlled, to prevent breeding resistant bacteria. I.e., ensuring that the treatment is done in full.

You might want to look for bacteriophage treatment, which lacks many downsides (at the cost of needing matching like donor organs, and thus distribution infrastructure).

If people were serious about this then it would be highly restricted for livestock.

Some years ago I suffering extreme chills for many days. I had to beg doctor for a round. She was mortified that I would want them. Next step was full ER visit while on a business trip out of state. So no insurance.

Was fine after a few days.

This happens every so often. Each time is a nightmare getting a prescription despite history.

You’re talking about something like https://mpkb.org/home/othertreatments/antibacterials/highdos... ?

I know what I said at the top of the thread, but I’d pay handsomely to assume the risk for an off-label prescription for Hizentra. The only probable downside is it wouldn’t work.

Regulated drugs have killed, and will likely kill more than unregulated drugs, and with dangerous devastation because the usual skepticism that surrounds anything novel will be assuaged by the stamp of approval.

So, if we eventually decide to count death by regulated drugs (not counting death by the regulation process itself) we might not come to a happy conclusion that it has worked as expected.

With the current regulations in place, it's definitely possible that regulated drugs have killed more people than unregulated drugs.

Would that still be the case without any regulation? All the regulations do is ensure that products intended for pharmaceutical use have a certain level of evidence of safety and efficacy.

It doesn't mean that unregulated products are unsafe or do not have a positive effect on health, it just means that one cannot sell them or market them as something that can cure disease.

Keep in mind that even with this regulation in place, people still try to sell things like the MMS [0], which the FDA warns against consuming [1].

While regulation isn't perfect, in this case I'd argue that it's a net benefit, all things considered. It's not perfect, but it's better than having no regulation in place.

[0] https://en.m.wikipedia.org/wiki/Miracle_Mineral_Supplement

[1] https://www.fda.gov/consumers/consumer-updates/danger-dont-d...

As someone who’s parents thought it would be a better idea to give them “natural” medicine growing up and leading to a lot of unnecessary suffering, I disagree with the idea that the onus should be on the user to prove the validity of the medicine.

If a medicine kills someone, who should the responsibility fall on?

I believe there is a place for letting people do what they want to their bodies, but it should only be done if the user is well informed of the risks, and is in sound mind to make an decision.

> If a medicine kills someone who should the responsibility fall on?

Medication, regulated or unregulated, is a risk the patient takes. I don’t think we’re optimizing for the right thing if the goal of regulation is to avoid death by medication. I’d rather die trying to cure my illness than die from inactivity/inability to try while the scientists go through the motions in the laboratory.

So to answer your question, we should empower patients to seek treatment, and live or die by their choices. Because it turns out no one cares about them more than they do. Also, this has been the law of the land in most African countries where natural/unlicensed medicine is heavily sought after, and no one is asking about who should be blamed for deaths during treatment.

And how can they be properly informed of the risks without empirical data from trials? Regulations exist to prevent malicious sellers from taking advantage of sick patients, who are making decisions under duress, about things way more complex than they can handle.

I realize it sounds paternalistic, and I can appreciate your point about giving people freedom to make the choice, but sometimes it’s not really a choice in the true sense you describe (no pressures from failing health; proper time to research everything; ability to weigh benefits and risks correctly).

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