I’m a little busy to explain it for the 100th time. Can you do a little research instead of putting words in my mouth?

There was a time when scientists thought HIV would never be curable. https://abcnews.go.com/amp/Health/5th-person-confirmed-cured...

I have no problem with Right to Try. But it needs to have rules. Pre-registration. No charge or payments to anybody (doctor or patients). Forced publication of even negative results. etc.

And, guess what, once you add the safeguards, that looks an awful lot like what we have right now.

Sometimes we enact regulations to protect vulnerable people, and the more fearful somebody is about their health the more at risk they are to be preyed upon, as has been proven through history.

That's why it would make sense to require such last-chance measures to be provided free of charge. This would remove the monetary incentive to swindle people. Picture a severely ill family member giving away all of their savings to some unscrupulous person that has been swindling terminal patients for years without actually helping anybody. Would you not want to prevent that?

There are millions of patients where they want to be on clinical trials with drug companies but cannot due to the laws. It seems strange to me that people will advocate for people not having a choice when they have so little chance.

That is how everything in society works. That's why we have a justice system, why the practice of medicine, law, engineering and so on requires a license, etc.

Have you looked at societies where those requirements don't exist or didn't exist in the past? Is that the kind of place where you want to live?

This is a subject that requires a little bit of nuance, so blanket statements aren't going to move the conversation forward. I am not advocating for absolute elimination of liberties, not for an absolute absence of regulations.

> It seems strange to me that people will advocate for people not having a choice when they have so little chance.

Well, I believe we have adequately explained our rationale, the sort of conditions that we think strike a reasonable balance. It's okay if we don't agree.

It's another thing to tell dying cancer patients they are not allowed to try experimental drugs unless they fit your personal criteria. You want them to die rather than have a right over what treatments they are allowed to have.

In effect you are claiming rights over them rather then having that right. That's pretty bad

If you go this route, the snake oil will quickly crowd out the treatments that actually have a chance of making things better. Not only will dying individuals be less able to wade through the garbage, but the researchers will have a tougher time getting to the patients they need for actual trials so future patients will also be impacted negatively.

Dying cancer patients have my sympathy, but I also went through this with Alzheimer's treatments for a parent. I had to wade through a VAST amount of garbage treatments that were even "officially approved". At least they went through clinical trials so they weren't actively harmful, mostly.

I can't imagine the disaster that would ensue if treatments for terminal patients didn't at least have to clear some level of phased trials.

Regardless you proved my entire point. The trials they went through weren't actively harmful.

Everyone feels self righteous for playing God with other people's lives restricting them from giving things a chance.

Even if it's snake oil salesman, if people want to try it who are you to interfere?

The vast majority of cancer right now, even with treatment is a death sentence (not counting skin cancers).

The fact that people like yourself feel entitled to stop others from getting experimental treatment is incredible

Let's improve law enforcement and punishment for Snake Oil sellers and presume good faith in all other instances.

Let people make decisions for their own bodies.

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.

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

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

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

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?

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...

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.

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/

COVID...see link above.

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

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.

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

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

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.

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

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

(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).

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.

How much of that is because there's nothing else offered to them, other than snake oil and "have fun dying soon"?

If their entire world is full of hucksters and con men, how can it possibly make things worse to open it up to legitimate research?

- Require disclosure of ingredients

- Require disclosure of tests for contaminants

- Require disclosure of adverse advents

- Have a standardized form for all of the above. Kind of a "truth-in-lending" document but for alternative treatments.

- Allow licensed doctors more freedom to administer alternative treatments without fear of license loss, so long as patient consent is received. This could be allow weeding out of some of the actual snake oil, but would add cost.

- Cannot charge patient for treatment.

That way nobody can actually sell snake oil.

Charging patients opens the door to any unscrupulous doctor to profit from desperate people.

Not charging patients closes the door to some potential legitimate treatments until e.g. a university funds some research to try them out.

I know which one of the two worlds I would rather live in.

For details, see the book The Death of Cancer by Vincent DeVita, director of the Yale Cancer Center and former director of the National Cancer Institute.

https://scienceblogs.com/insolence/2015/12/18/vincent-devita... is a good take on the work (remember when people used to blog?), and includes some good examples in the same stream of cancer treatment history where it's clearer that cancer researchers trying things on patients without government approval is not clearly necessary and certainly not sufficient for advancing the state of clinical practice.

Super interesting history.

That blog entry is interesting but it's based on an article Malcom Gladwell wrote about DeVita's book; the author says he hadn't read the book himself. It does make some good points. I feel there ought to be a middle ground, where physicians are professionally expected to base decisions on good science (rather than "our patients would vomit on the way home if we gave them the effective dose"), but also we don't have government officials prohibiting terminal patients from getting treatments that oncologists think could help them.