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To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never
by exmadscientist 3y ago
To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything. This is a crime, but it's very very hard to prove.
And these companies get very good at gaming the system, because that is their product. They are mechanisms to commit fraud, stealing all their patients' money and all their families' hope. This is a very bad thing. And, no, I am not making any of this up, but I dare not name names here. These companies also tend to be litigious!
The impact of this is extremely severe. First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Second, people lose faith in The System, because they think that the fraudulent treatments should have worked, so they lose faith in the good ones too. And third, R&D efforts can get redirected away: rare condition X already has a treatment, so let's put our efforts elsewhere (oh wait, no it doesn't, that was fraud, now there will never be a treatment).
We will not untangle the experimental treatments issue until we confront this problem. Just do not think that it is all in "good faith" here, or even "best effort": there is real fraud going on, committed by monsters that know exactly what they are doing to take their profit.
- civilitty 3y ago> First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Like Steve Jobs. Fruit juice kills people.
- inconceivable 3y agoclarification: fruit juice is basically pure fructose which cancer loves and your organs can't handle. actual fruit has fiber and you're unlikely to eat enough to cause harm.
- civilitty 3y agowoosh Steve Jobs got into alternative medicine to treat his pancreatic cancer, including trying a fruitarian diet. Since he had a rare form that isn’t as fatal as pancreatic cancer usually is, there’s a chance he could have survived significantly longer if he had instead treated it with traditional, non-experimental medicine.
- londons_explore 3y agoA simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved. Then the snake oil manufacturer can peddle their unapproved treatment to as many people as they like, but they are losing money on every dose unless the treatment turns out to be safe and effective. Obviously you need a big team of scientists on the approval panel to make sure no snake oil salesmen are faking trial data to get their payday, but that seems solvable.
- 7e 3y agoBut at the end of the day, failed treatments still kill people. Some may choose the experimental treatment, and die, over the crappy chemo, which gives them a chance to live. Escrow won’t bring them back.
- londons_explore 3y agoTrue. But speeding up the search for a treatment saves many future people. The ethical tradeoff between definitely saving a life now or probably saving many lives later is an age old problem, but one which society hasn't properly converted into laws and processes in medicine.
- echelon 3y agoIf I knew I were going to die, I'd at least want to try something new even if the chances were slim. If it didn't work out, at least it'd be a new data point for those that come after. That means something.
- takinola 3y agoI love the innovative thinking here but I can easily think of a way to game this system. Snake Oil LLC mounts a PR campaign claiming the governmen is trying to shut them down by delaying approvals so they can't get their money so they can't undercut Big Pharma. If Snake Oil (TM) doesn't work, why have patients ponied up $X billion in fees over the years? You have enough stories like this (plus there will inevitably be some mistakes by the FDA that will be shown to be proof of government perfidy) and the conspiracy theories will have a field day and fuel a black market.
- thechao 3y agoThere's a trivial well-regulated market solution: medical company A registers treatment B with the FDA; patients can try experimental B from A on A's dime: let them out their money where their medicine is.
- joak 3y agoExactly, a treatment should be free until approved by FDA. The team would try to make the treatment an experiment useful for science. They would have no incentives to kill prematurely patients that would otherwise have lived longer. They would work in good faith. Disclaimer: I actually had had a treatment (surgery) not yet approved, it saved my foot from amputation. This was in Europe. The doctor was adding me to the long lists of patients he saved. He also trained other doctors to perform the surgery. Eventually the procedure was approved by FDA and in Europe. I'm glad to have contributed. Before going on that I read all the articles related to my problem (many thanks to sci-hub) and then send a email to the surgeon. He said "I can indeed help you" (best day of my life) I didn't pay anything (only the plane tickets to get where he was)
- citruscomputing 3y agoIt should also be free after it's approved by the FDA.
- chroma 3y agoHow would that work? Would the government use money from taxes to pay the drug companies for their costs, plus some profit margin?
- joak 3y agoBefore approval it's research, it's an investment. When in developing phase it's normal not to make money. After approval it's the health insurance or the patient that pay. In countries like Singapore or France the taxes pay so it's "free" (actually it's an "insurance" backed by the govt)
- themitigating 3y agoThis is a crime, but it's very very hard to prove Then how do you know it's prevalent?
- exmadscientist 3y ago> Then how do you know it's prevalent? Let's just say I have a personal blacklist of therapeutics companies I will NEVER seriously work for (though I have done a couple things for them that satisfied my conscience), and a few electrical schematics squirreled away should I need to defend myself someday....
- lacrimacida 3y agoId let people use unaprooved treatments labeling them with big warnings in red that this is not approved and may be snakeoil or something like that. Whoever attempts to hide, remove such labels fined severely, possible jail time. Couple of scandals of unaprooved treatments wreaking havok and very few would risk it afterwards.
- deleted 3y ago[deleted]
- realitygrill 3y agoWould you email me? I'm really interested in learning about this. I have similar intuitions about places to avoid.
- jonhohle 3y agoMaybe someone should create a throwaway and provide a list of they’re concerned about retribution. People not calling out scum because they are afraid of the consequences of outing criminals makes the world a crappier place for everyone.