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Re:Cancer expert gets experimental treatment for incurable t... by sneak on Wednesday September 20, 2023 @12:20PM (#37586121)
Why are safeguards necessary? They're going to die anyway, letting them try literal snake oil isn't hurting anything.

Let people make decisions for their own bodies.

Re:Cancer expert gets experimental treatment for incurable t... by janpieterz on Wednesday September 20, 2023 @12:28PM (#37586232)
Fair, but there’s already a lot of medical related alternative treatments and activities that cause people to give up on more established practices and causes real harm. Currently the laws allow for the government to stop a lot of that. I don’t like it, but don’t know a solution that would work, people are extremely vulnerable in these situations.
Re:Cancer expert gets experimental treatment for incurable t... by influx on Wednesday September 20, 2023 @12:41PM (#37586414)
Their body, their choice.

Steve Jobs probably killed himself by his medical choices but that’s what he wanted to do.

Should we have strapped him in and forced him to get conventional medicine?

Re:Cancer expert gets experimental treatment for incurable t... by magicalist on Wednesday September 20, 2023 @01:43PM (#37587245)
> Steve Jobs probably killed himself by his medical choices but that’s what he wanted to do. Should we have strapped him in and forced him to get conventional medicine?

No, but we could have regulated transparency of "nontraditional medicine" and any fraudulent claims the people he was listening to were making.

Re:Cancer expert gets experimental treatment for incurable t... by sneak on Wednesday September 20, 2023 @01:59PM (#37587493)
Walgreens sells homeopathic products on the shelf right next to real medicine.

The NHS and German public health systems pay public money for homeopathic fake remedies.

(To their credit the NHS has reduced the practice.)

Re:Cancer expert gets experimental treatment for incurable t... by astrange on Wednesday September 20, 2023 @02:21PM (#37587850)
This can be effective; a lot of medicines have experimental evidence saying they don't work, because they aren't better than placebo, but the reason for this is that the placebo works too.
Re:Cancer expert gets experimental treatment for incurable t... by magicalist on Wednesday September 20, 2023 @02:41PM (#37588169)
Re:Cancer expert gets experimental treatment for incurable t... by eggy on Wednesday September 20, 2023 @12:52PM (#37586590)
The established practice of encouraging blanket COVID boosters to otherwise healthy five-year-olds probably tilts more towards harm than the benefit side of things. And the boosters are not like the flu shot. They are for something that has already been circulating. The seasonal flu shot is a projection of what strain(s) may circulate come flu season. And COVID is year-round.

Prosecute snake oil salespeople, and allow people agency to make their own decisions.

Re:Cancer expert gets experimental treatment for incurable t... by janpieterz on Wednesday September 20, 2023 @02:22PM (#37587857)
Where’s that boundary between snake oil and “freedom of choice, but alternative” though? That’s the tough part here right? It’s subjective, not in it’s ultimate truth but in it’s experience by everyone.
Re:Cancer expert gets experimental treatment for incurable t... by eggy on Thursday September 21, 2023 @12:03PM (#37599667)
I am not trying to say the boundaries are clear between the choices, but that the government and regulation shouldn't be making that decision for you. Prophylactic law or trying to legislate intelligence.
Re:Cancer expert gets experimental treatment for incurable t... by u801e on Thursday September 21, 2023 @03:11AM (#37594173)
> The established practice of encouraging blanket COVID boosters to otherwise healthy five-year-olds probably tilts more towards harm than the benefit side of things.

Other than the fact they cover existing strains rather than projected strains, what makes these boosters different compared to other vaccines like the one for varicella that's also given to otherwise healthy children?

Re:Cancer expert gets experimental treatment for incurable t... by eggy on Thursday September 21, 2023 @01:15PM (#37600771)
About 25 years of long-term studies and VAERS monitoring for varicella outside of the pharmaceutical company.

Children not vaccinated for the Chickenpox will typically have more obvious symptoms whereas children do not typically have severe symptoms if not vaccinated for COVID. "Healthy" children, not obese, diabetic, or otherwise immuno-compromised children.

You can't compare adverse reaction statistics for varicella and COVID in an apples-to-apples comparison, since the first COVID vaccine was given just less than three years ago vs. 25 years of a varicella vaccine. Long-term study results for COVID vaccination simply don't exist for obvious reasons; it's only been about three years since the vaccine was first publicly administered.

The R0 of Chickenpox (varicella) is higher.

The benefits do not outweigh the risk.

I don't know if this type of thing happened with varicella or any other vaccine in recent history, but:

Clinical trials are usually not performed on children, and there were no RCTs (Randomized Control Trials) done on children as far as I know or have read about.

Countries like Sweden recommend against vaccinating children 5-11 because they think the benefits don't outweigh the risks.

It's funny, but the UK doesn't have varicella in the vaccine schedule for children for fear it will lead to a risk of chickenpox and shingles in adults[1], which can be more severe. I remember letting my older children play with their cousin who had chickenpox so they would get it. This was common for my generation, and within my anecdotal sphere, I was never aware of child being more than the usual sick with it. The NHS take on it is pretty interesting from a societal vs. individual angle.

Some things that weigh on my trust of big pharma and especially Pfizer:

Pfizer destroyed their long-term study control group by vaccinating them, so that took out their control group and invalidated that long-term study.

Pfizer released piecemeal heavily redacted documents when they were legally obligated to comply with a FOIA request for their study results used to seek FDA approval and the EUA that would idemnify them; the government would take on their liability from law suits.

[1] https://www.nhs.uk/conditions/vaccinations/chickenpox-vaccin...

Re:Cancer expert gets experimental treatment for incurable t... by u801e on Friday September 22, 2023 @11:00AM (#37612953)
> You can't compare adverse reaction statistics for varicella and COVID in an apples-to-apples comparison, since the first COVID vaccine was given just less than three years ago vs. 25 years of a varicella vaccine.

In 1998, people could have said the same thing about the varicella vaccine compared to MMR, DTP, and Tdap. Around the same time period, they had started administering the rotavirus vaccine and subsequently found an association with incidence of intussception and stopped administering it. Rotashield was subsequently withdrawn from the market. After 8 years, other rotavaccine formulations were approved and are now part of the routine childhood immunization schedule.

What happened with Rotashield did not happen with the Pfizer and Moderna formulations of the COVID-19 vaccine and subsequent boosters.

> Long-term study results for COVID vaccination simply don't exist for obvious reasons; it's only been about three years since the vaccine was first publicly administered.

This is the case for all vaccines when they first start being used.

> Countries like Sweden recommend against vaccinating children 5-11 because they think the benefits don't outweigh the risks.

Which vaccine are you referring to?

> It's funny, but the UK doesn't have varicella in the vaccine schedule for children for fear it will lead to a risk of chickenpox and shingles in adults[1], which can be more severe.

The varicella vaccine has been routinely administered to children since the late 90s in the US. If it lead to an increase in incidence of chickenpox in adulthood, then we would have heard about it by now. As for shingles, it remains to be seen, but this condition is not uncommon in the older population who were infected with chickenpox in their childhood.

We wouldn't continue recommending the COVID-19 boosters if there was a real problem associated with the vaccine that was worse than the morbidity/mortality statistics from the infection itself.

Re:Cancer expert gets experimental treatment for incurable t... by eggy on Wednesday October 04, 2023 @11:13AM (#37766368)
> Rotashield was subsequently withdrawn from the market. After 8 years, other rotavaccine formulations were approved and are now part of the routine childhood immunization schedule.

My point exactly. They saw some issues, paused, and 8 years later came back with another formulation. Given young, healthy children are nowhere close to the risk to the elderly, obese, or immuno-compromised, what's the push? Early on with blod clots, young males having myocarditis (my nephew had to be rushed to the hospital 4 hours after his jab - myocaridtis), but god forbid you even hinted it might have been the vaccine. I vaccinated all of my children with the typical childhood immunizations. I am sorry, but the push on the healthy and young makes me think twice about it for that group, and $40bn a round of booster for Pfizer lends some suspicion on how much is public health and how much is lining the pockets of big pharma and friends.

>> Long-term study results for COVID vaccination simply don't exist for obvious reasons; it's only been about three years since the vaccine was first publicly administered.

>This is the case for all vaccines when they first start being used.

Except you didn't have the mandates, pressure, and comments about it being safe, and censoring any remarks about it in the papers or TV broadcast news at the same time. The COVID vaccine was being touted as "perfectly safe" early on (except before its release by Kamala, and many others sending signals of mistrust because Trump). No, nothing like this before, I'd say.

>> Countries like Sweden recommend against vaccinating children 5-11 because they think the benefits don't outweigh the risks.

  https://www.reuters.com/world/europe/sweden-decides-against-recommending-covid-vaccines-kids-aged-5-12-2022-01-27/

>Which vaccine are you referring to?

COVID...see link above.

Re:Cancer expert gets experimental treatment for incurable t... by hotpotamus on Wednesday September 20, 2023 @12:32PM (#37586289)
Why not just kill them and take their money if they're going to die anyway? Then you don't even have to squeeze the oil out of snakes.
Re:Cancer expert gets experimental treatment for incurable t... by avery17 on Wednesday September 20, 2023 @12:37PM (#37586361)
Require the treatment be free for the patient. Problem solved.
Re:Cancer expert gets experimental treatment for incurable t... by RandomLensman on Wednesday September 20, 2023 @01:20PM (#37586918)
Who will then pay? Doctors and hospitals eating all the costs doesn't seem likeky. It is not just the drug, but administering it, treating side effects, monitoring etc.
Re:Cancer expert gets experimental treatment for incurable t... by danielmarkbruce on Wednesday September 20, 2023 @04:05PM (#37589394)
For experimental treatments, it's very likely. It happens today in many clinical trials.
Re:Cancer expert gets experimental treatment for incurable t... by RandomLensman on Wednesday September 20, 2023 @05:23PM (#37590376)
Yes, as part of trials but for self-selected medication by patients - not sure. The funding sources for trials wouldn't necessarily just extend there.
Re:Cancer expert gets experimental treatment for incurable t... by mortureb on Thursday September 21, 2023 @03:47AM (#37594457)
The organization giving the experimental drugs with the view that it will pay for itself in relevant research and treatments that come from the testing.
Re:Cancer expert gets experimental treatment for incurable t... by RandomLensman on Thursday September 21, 2023 @03:58AM (#37594539)
But these wouldn't be trials in a useful sense if patients can self-select. The economics might not pan out unless you get to gatekeeping similar to current trials.

And that assumes it would be all bona-fide substance providers.

Re:Cancer expert gets experimental treatment for incurable t... by mortureb on Thursday September 21, 2023 @10:07AM (#37597843)
It could sure speed up a lot of the preclinical work to get to trials. I’m sure the company would love to not have to extrapolate their success probabilities based on mouse studies leading to extensive expensive trials that might not work out in the end.
Re:Cancer expert gets experimental treatment for incurable t... by RandomLensman on Thursday September 21, 2023 @11:55AM (#37599546)
Doubt it as people would make very uninformed choices, thereby producing mostly worthless data.
Re:Cancer expert gets experimental treatment for incurable t... by KaiserPro on Wednesday September 20, 2023 @12:48PM (#37586526)
I'm going to take this as a naive question and answer it with an example.

Andrew Wakefield et al published a paper based on a small number of participants. they effectively preyed upon desperate parents to assert that MMR caused autism. (https://pubmed.ncbi.nlm.nih.gov/9500320/)

When people are desperate, its very easy to get them to do stuff thats very bad for them.

The problem is that in some cases that "very bad" thing might actually be quite good.

For example adding chlorine to water, on the face of it, is a fucking stupid idea. However along with proper sewage/sanitation, its responsible for most of the extended lifespan we enjoy in the west.

It is a grey area between doing good, through taking informed risks, and using shortcuts that require desperate people to take extra ordinary risks.

For example the reason why that vaccine was a massive risk is because the immune response could have just attacked the brain tissue as well as the tumour. And as it is a learned immune response, its super hard to stop it.

Re:Cancer expert gets experimental treatment for incurable t... by sneak on Wednesday September 20, 2023 @01:51PM (#37587359)
We are discussing specifically in the context of people who are less than a year from death anyway. Risks are irrelevant at that point if the person in question wants to try them.

All of your examples seem to be irrelevant in that context.

Re:Cancer expert gets experimental treatment for incurable t... by KaiserPro on Thursday September 21, 2023 @05:48AM (#37595411)
we were talking about desperation and people taking advantage of that desperation.

Just because you are terminal doesn't mean that people asking you to risk your life are anymore trustworthy.

Re:Cancer expert gets experimental treatment for incurable t... by tim333 on Thursday September 21, 2023 @07:46AM (#37596227)
Wakefield wasn't offering a treatment. He was selling a test kit that may have allowed people to launch lawsuit that they were harmed by vaccines. That's a different category of thing really.
Re:Cancer expert gets experimental treatment for incurable t... by fzeroracer on Wednesday September 20, 2023 @12:51PM (#37586562)
Well, because often said snake oil can be quite toxic to your body and result in a lot of needless suffering. To be honest, most people know that if 'right to try' became a thing it would need to be followed up with 'you waive all rights to a lawsuit' because the moment an experimental treatment resulted in an extremely painful and accelerated death suddenly all of the people being advocates for right to try would sue them out of business.

In this scenario, it's a cancer expert well aware that these treatments could possibly result in the above and is willing to do so anyways.

Re:Cancer expert gets experimental treatment for incurable t... by Johnny555 on Wednesday September 20, 2023 @01:43PM (#37587251)
Why are safeguards necessary? They're going to die anyway, letting them try literal snake oil isn't hurting anything.

Unless they were so enamored with the snake oil treatment that they ignored a legitimate treatment that have been effective.

Re:Cancer expert gets experimental treatment for incurable t... by flir on Wednesday September 20, 2023 @03:58PM (#37589296)
If there's a legitimate effective treatment available, they're no longer terminal cases, are they?

I suppose you could hypothesize someone refusing treatment until its too late then trying the snake oil...

Re:Cancer expert gets experimental treatment for incurable t... by Johnny555 on Wednesday September 20, 2023 @04:17PM (#37589586)
This article is about a doctor with incurable cancer who was able to find a experimental treatment that so far seems to be helping. If instead he had been focusing on magic magnetic bracelets with no hope of helping, he may have not have tried this science based treatment.
Re:Cancer expert gets experimental treatment for incurable t... by flir on Friday September 22, 2023 @06:19AM (#37610193)
I've thought about this for a couple of days because I thought it deserved serious attention, and I see your point, but a terminally ill patient choosing "the wrong one" between two possible treatment paths when neither of them is likely to work seems like such a corner case that I don't think it should block, or even modify, "right to try" laws.

(And on further thought, magnetic bracelets aren't currently banned, so it seems like a bit of a straw man. I can't think of a woo treatment that could potentially be unlocked by a right-to-try law. I think they're all already available - Steve Jobs' certainly was, to take one famous example).

Re:Cancer expert gets experimental treatment for incurable t... by pc86 on Wednesday September 20, 2023 @02:46PM (#37588261)
But it is enriching snake oil salesman, which lets them spend more money to convince people who aren't dying to spend money on their bullshit.

Look at the bigger picture - it doesn't matter if it's just this person doing whatever they want with their body if it's a net negative for society as a whole. Society shouldn't accept any externality just because someone thinks cuckoo fraud "science" will work when it won't.