[TZubiri]

I don't see the issue or point of limiting profitabilit, what am I missing?

Here's the scenario I have in mind.

John has an uncommon cancer X with no cure. John contacts Cancer R&D Corp. John pays 80% of his life savings to R&D corp for research into his specific cancer X and provides himself as a test subject in the meantime. R&D corp attempts to find a cure for the disease, if the mission fails and John dies, in the future if other patients with cancer X appear, they can take over from where they left. Payment can be split into an upfront half for research and bonus paid upon a successful cure (or year of quality life milestones) to give incentives for actual success. So as to avoid companies from benefitting from never finding a cure.

[cogman10]

The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure.

That already happens very frequently. For example, bleach enemas to cure autism [1]. Colloidal metals to cure cancer [2]. And a whole host of other cure-alls.

Now imagine you have a mechanism where they can claim to be legitimate research AND there is an incentive to bilk people out of 80% of their life savings.

Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff? Well, think Vioxx.[3] Sure, maybe this cancer drug works but it also might give you a heart attack. Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results.

Taking profit out of the equation makes it so that the research isn't and can't be endless. It makes sure there isn't a perverse incentive to make lethal drugs that work good enough for some diseases. I'd love it if we could have a win win, but the free market loves to reward bad actors.

[1] https://www.nbcnews.com/tech/internet/moms-go-undercover-fig...

[2] https://www.healthline.com/health/colloidal-silver-cancer

[3] https://en.wikipedia.org/wiki/Rofecoxib

[TZubiri]

"The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure."

So?

Because there's ilegitimate companies you should outlaw legitimate companies?

Should we ban banks and stock brokers because ponzi schemes exist? What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.

"Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff?Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results."

I'm not an expert on the subject, but I do know that the subject of the article and what you are talking about are 2 distinct domains. One thing is developing a drug or treatment for a common disease. And another is treating a specific patient. Right? Two very distinct services/products with very different regulations. I do know at least from the import regulations my country has laxer requirements for infrequent diseases. Of course a treatment for diabetes can support stricter regulations than for Cancer of the Biliary Duct.

Additionally what I suggested wasn't even treatment, I proposed just Research & Development, this is already possible through donations.

[cogman10]

> Because there's ilegitimate companies you should outlaw legitimate companies?

No, you should have regulations and enforcement to ensure that stop illegitimate businesses from operating. Those regulations might make it harder for legitimate businesses to operate but that's to ensure public health isn't sabotaged by bad actors.

> Should we ban banks and stock brokers because ponzi schemes exist?

No, we banned ponzi schemes through regulations. That's what I'm proposing.

> What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.

There's always going to be people looking for loopholes in the law to make a buck. That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements.

> I'm not an expert on the subject

You should read into it. The fact is that, particularly with medicine, we have to be careful about the leeway we give to companies. You simply have to assume that anyone selling something is amoral. Without regulation, companies can and do run the calculus of "How much will these deaths cost us vs the money gained from selling the product".

Vioxx isn't an isolated example either. Look up "Dalkon Shield", a product that had about a 1% chance of causing sepsis which killed and crippled literally hunderds of thousands of women. A product that, after this was found out, after the lawsuits flew and it was removed from the market, was shipped to and sold in Africa for several years.

My point is, that whenever anyone starts talking about relaxing regulations and making it easier for a drug company to profit, we should be thinking about the above abuses. Because companies can and will abuse the system.

You may still say "so what" but you should be thinking about "So what if the treatment cures cancer, if it causes a stroke, heart attack, or premature death when other maybe less effective treatments may have extended life". Cancer isn't the only thing that kills people and there are fates worse than death that drugs can cause.

> Two very distinct services/products with very different regulations.

The discussion here is how do we make individual treatments like the one in the article more available. The points I'm raising is that any increase in availability needs regulations to ensure it's not abused. I've given specific examples where regulation/enforcement has been lax which has allowed grifters and drug companies to directly and knowingly harm the public.

[TZubiri]

"regulations might make it harder for legitimate businesses to operate"

We just have a very different view. I think regulations HELP businesses.

For example, a well meaning company wants to make a cure for AIDS, a good regulation would require a study of length and size proportional to the volume and lethality of the disease. If the study is small, the regulation may allow small trials, and its first batch of patients be itself a trial for bigger batches.

If there were no such regulations, the well-meaning company may have had a lot of success, but maybe they would have gone to market too fast and detected a side effect in a big trial instead of a small trial.

Conversely, a terrible company might either choose to comply with the trials, and genuinely pivot to legitimately seeking a cure. Or avoid regulation altogether.

Good regulation is not an equal cost imposed to both parties, and never the cost is higher to the good parties. Regulation is an incentive that when followed leads inevitably to the results desired.

"That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements."

Also not at all how I view the law. The law is written once, what is updated is the case law, the court rulings. Only when there is a change in technology other foundational changes, or very biig learning cycles (50 years), do we make another attempt at the same problem. You don't update a law every 3 years patching for loopholes playing a game of catch me if you can.

[fwip]

To see the issue, replace "R&D Corp" with "Mystical Crystal LLC" or "Mr. Henry's Miraculous Snake Oil Elixir Ltd."

Fraudsters and scam artists are happy to rip off people trying to avoid death.

[JumpCrisscross]

Or Steve Jobs. The problem isn't so much that the treatments don't work. It's that they're pursued exclusive of ones that do.

[TZubiri]

I responded to this in other posts, but this would be throwing the baby with the bath water. And it's especially bad as the good suffers more. Legitimate companies will follow the law, but the ilegitimate actors will just sell mystical crystal anyways.

[fwip]

I've never really understand this whole "laws are useless because criminals will break them" thing.