Sure. But this has nothing to do with the scenario of an unproven stem cell therapy. There the chances are 99,99999% vs. 0.00001%.

> Regulating non-approved medical treatments out of existence might look appealing, but IMO we need to allow informed, rational people to choose unapproved treatments where no approved one exists.

This is a really bad idea, and your comment ideally shows why that's the case. You're selling people the idea that they have something like a 50/50 chance. But that's a complete illusion. Even 10/90 is an illusion. The chances of a completely unproven therapy to do any good are practically zero.

It's different if you have early stage interventions that have some weak evidence behind them. But there are already mechanisms to cover that. The right thing to handle that is to add people to a study.

> This is a really bad idea, and your comment ideally shows why that's the case. You're selling people the idea that they have something like a 50/50 chance. But that's a complete illusion. Even 10/90 is an illusion. The chances of a completely unproven therapy to do any good are practically zero.

The 50/50 is for sake of practicality, it's not the main point.

The point is some people would take unproven treatments if it meant they had any chance to improve their quality of life. See: The man who's having his head transplanted.

I've been in this situation before where all approved methods had failed me. I was extremely desperate to find something that would help, so I was vulnerable to con men (and they made a killing off me from "homeopathic remedies"), but when I settled down with a clear and rational head, I decided that I would be worse off if I continued living in my pathetic state.

So, I did my due diligence and interviewed every treatment that looked promising (after doing research on my disease). Even though they were all "out there" I found one I was confident in and signed up.

There was no guarantee I was going to be better, only that there'd be a $60k hole in my pocket. To make a long story short, it improved my condition to a manageable state and I'm very happy with the results.

I've never been a proponent of restriction, only proper education. If someone is properly educated on the possible harms and how to avoid them, then why shouldn't they be allowed to take a course they believe would benefit them (without hurting anyone else)?

The problem that's being discussed here, though, is that the clinic had a power imbalance (partly due to lack of proper education on the subject) and preyed against these three women. Perhaps if they were informed properly (due to regulation on full disclosure) they might have been better off.

In reality, we are not equipped. We are not even equipped to analyze day to day news that we receive (if you consider all the biases, journalistic mistakes and private interest media/websites). We just don't have the time to do the same job as a fully trained doctor / FDA certifier would. We might convince ourselves based on some outliers, but in reality - specialization has been the key to address the ever expanding scope of knowledge today.

Anecdotally, When I was a kid, there used to be pretty much a physician or a surgeon in India. They handled 99% of cases compared to today when every body part has a specialist. That's the scope of knowledge spread - It is very trivializing to assume that we can jump in and figure it all out better than the experts.

I am glad that your non-approved treatment worked out. But it is anecdotal - there are a million other equivalents where it didn't. This spans people with intelligence of all ranges. Cornered people would be will do almost anything based on how they perceive the current threat. The fact that they convince themselves that they are making the right call, doesn't make it right.

Somehow the back alley quack with the completely unrested remedy evades all blame for their actions.

Quackery has a supply side and a demand side. The supply side is easier to deal with. It's a smaller target. Furthermore, it's in the interest of the quack to produce misinformation that your education programs will be in competition with.

This is contrary to what I said, but I wasn't clear. Let me elaborate:

> Perhaps if they were informed properly (due to regulation on full disclosure) they might have been better off.

What statements the clinic puts out should be regulated, just like supplements. You are not allowed to say some things, but required to say other things.

> It's either with the uneducated blind women, or, if you're a generous soul, the society that failed to properly educate them.

The blind women is partly to blame (though dependent on her ability to research -- an 90 y/o alzheimer's patient is much much much less to blame than a 25 y/o office worker) for being taken advantage of. The clinic, however, holds the majority of the blame for practicing deceptive procedures and misinforming (if they indeed had misinformed, I only skimmed the article).

> Quackery has a supply side and a demand side. The supply side is easier to deal with. It's a smaller target.

This is true, but it does not bring about the best outcomes. Proper medical procedures (as accepted and enforced by regulatory agencies) are most of the time years behind in implementing new and better techniques (or not incentivized to, see: europe vs. american models of health treatment).

You hurt: the people to whom accepted practices do not offer relief, the research of "unethical" procedures that could otherwise save lives if there was no stigma (again, see: head transplant), and people's freedom of choice.

You can't just say that unproven treatments never work. Did you even read the article? There's an example of an unproven stem cell therapy that may have worked right there!

You don't perform an experimental procedure on both eyes. This is just basic common sense. Even if there was a promising experiment for your grandfather, it would only be performed on one eye.

To make my above statement true, you need only consider what defines "success" from the point of view of the quack clinics. In each case, the treatment achieved its primary goal, which was to part desperate people from their money. The treatment's effect on their vision was a side effect.

For the same reason, I wouldn't dignify the procedure with the "experimental" label. When you say an approach is experimental you're implying that it's being performed under carefully controlled and monitored conditions to improve the state of medical knowledge. It sounds to me like this isn't at all what those treatments are about.

There needs to be several rounds of animals testing first, formal procedure and clear indications to the patients of the risks. Elderly people over 80 are in some ways ideal (less to lose; depending on how you measure life/quality of life) and could have treatment in only one eye, but are also less than ideal since their could be a higher rate of failure simply due to their age and the inability of their bodies to accept treatment.

For something to be a treatment, it has to work consistently, with the same success rates and documented side-effects across a population. There is a reason those studies are slow and take time, because we try to be careful today when dealing with human life and not be Nazi/MKUltra scientists.

The difficult part is the word "..informed,...". Without regulation, how can you enforce the research and data collection and sharing needed to estimate the efficacy of the treatment? And without a good estimate of the risks and efficacy, how can you make an informed decision?

Granted it's a bit of a chicken and egg scenario; you need data before you can make an informed decision, but you need experiments before you can get data.

I'm actually pretty comfortable with letting people at the end of their lives try unproven experimental treatments; but we need to ensure that we as a society learn from those experiments so they won't always be unproven and experimental; so the first 100 people taking a treatment know it's a toss-up on results; the next 100 people know there's a 15% chance of improvement/10% chance of death. I fear that without adequate regulation, there would be little incentive to track what worked and what didn't.

While the field may not need full blown regulation like the regular pharmaceutical industry, I'm guessing it needs something more than what exists now.