I usually downvote (in my RSS reader) articles about cancer because there are just so many of them but YOShInOn has lately shown me a lot of articles about breakthroughs in glioblastoma, I suspect also that one.
It's a tough nut to crack, my thesis advisor passed away from glioblastoma at a relatively young age.
I applaud these researchers, but I have to admit this quote made my blood boil:
>> "I can only do this because I'm a cancer researcher and clinician and so inherently understand the risks," he said.
As a cancer survivor, and someone who lost a loved one to glioblastoma, I despise this mindset. The idea that us "common folk" aren't intelligent or educated enough to make the decision to join risky trials is maddening.
I fully understand and support this mindset when it's regarding minor diseases. But if someone has 6-9 months to live, and zero chance of survival, I think they have every right to choose to be used as guinea pigs.
I know my relative would have LEAPED at this sort of opportunity. She was given 6-10 months, and was dead by 4.
At the time, there was an on-going trial she was rejected for, because she had a minor preexisting condition, and thus is it was "too risky." I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months.
I am hopeful that the rapid development of the COVID vaccine may have flipped a switch in biotech, and may lead to more risky and experimental trials for truly deadly diseases, such as glioblastoma.
If not, I will continue to look to China for hopeful developments. They seem to have more relaxed barriers for trials, and I firmly believe this is one of the reasons their biotech industry is exploding at such a rapid pace.
Same elitist attitude I saw on a recent NYT piece about paid full-body MRIs. "People might find stuff that isn't cancerous and freak out".
OK well, it might also find early stage cancers that show no symptoms until past the point of no return!
MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years.
As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers.
There are a wide range of cancers there really are no routine screenings for.
Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others?
We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4.
I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.
It's more complicated than that. Misdiagnosis comes with a high cost. What we emphatically do not have is a way to reliably confirm or stage without additional risky interventions, and that's before we even start discussing the mental health implications of misdiagnosis. So as a doctor, it's not about withholding information for the benefit of the patient, it's being aware that for many cancers, in aggregate, they may very well end up doing more harm than good if they screen for it.
I don't understand this logic at all. How can more information be bad? If you see a mass that looks very likely to not be cancer, for which the cost of further investigation is higher than the likely benefit, then the rational patient will agree not to investigate further. I don't see how more information can be bad unless you assume that the patient is an idiot or irrational.
Because further investigation is dangerous. So you see a mass which has an a posteriori probability of being cancer of 1%, but the investigation causes serious complications in 2% of cases, then the decision to investigate is not clear cut. The additional information has not only not helped but has led to additional stress.
Not all further investigation needs to be surgical.
A mass that is found can be observed in decreasingly frequent ultrasounds or some other imaging and surgically investigated/removed only if found to be growing or passed a concerning size threshold.
A doctor jumping straight to invasive procedures seems to be a mix of poor risk management and rarity of this type of medical imaging.
My doctor for example, pointed out that actually in some East Asian countries, there are routine annual imaging tests done that pick up some of the types of cancer we do no screening for.
To me the reason we don't in US is simply how medical care is paid for - employer provided insurance, and some actuarial calculation that on the insured pool they'd spend more money on imaging than they'd save on high cost stage 4 cancer care. Personally I'm happy to advocate more for myself, even if it costs money.
Exactly. You could even have the option of contributing your MRI scans to academic research so that future identification of cancer improves, and set up a happy feedback loop.
The scary truth is modern western medicine is primarily optimized to extract revenue while reducing spending and improving patient outcomes is merely a side effect of that process. Even in places such as the UK NHS it's all about not finding out things we don't want to know so we don't have to spend money dealing with it.
This is why I look forward to when we can replace doctors (not nurses) with AI.
> The scary truth is modern western medicine is primarily optimized to extract revenue
MRI scans are a fantastic source of revenue, as are treatments for things that don't actually need to get treated. Reducing those things are actually doing the opposite of the motivation you're claiming.
Those raise revenue. Actual spending involves effort which cannot be easily industrialized, and is only done to maintain the prestige of the industry.
This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.
> This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.
You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?
It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.
> You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?
Anything that isn't completely reduced to an industrial process. i.e. we want to have a simple no-effort repeatable billable outcome for this or we won't do it and will claim doing so is counter productive or dangerous.
> It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.
And they're doing the establishment's dirty work by doing so.
To provide a concrete example, I'm in Canada, and my other half had to pay for private MRI and ultrasound scans to identify a lump that she was laughed out of the room by three successive doctors for claiming she had. The MRI got her finally referred to a surgeon that announced he'd never seen anything like it, removes it, end of story.
That's far from an isolated case. I know people in the UK that literally died from these antics.
At one point I was invited to the opening of some medical simulation centre, and the speeches were enlightening. Two things stay with me: tests in India demonstrated that qualified doctors were no better than unqualified doctors except when the qualified doctors were told some of the patients were faking as part of an experiment and they are being observed, but mainly "I read a study that showed ~5-10% of people in US hospital are there because of a medical mistake from a previous visit, so I laughed and commissioned an equivalent study to show how much better we are in Canada, except for us it was >15%". The person telling that story was rightly disgusted. Those are not numbers for a profession that respects patients in the slightest.
You will forgive people with actual experience on the receiving end of this nonsense for thinking that maybe it's not actually setup to provide the assistance it claims to provide, and is primarily for the aggrandizement of those engaged in the rituals.
Both human nature and the legal system can be very hostile to "we didn't investigate anomaly A, B, C, D, E, ... in the patient's scans and test results, because none of them seemed likely to be worth the costs of doing so".
Yes.
This to me is the same line of thinking as "in a meta study, wearing a helmet makes bikers more reckless and prone to injury so it's actually safer to be helmetless".
No, actually it's safest to wear a helmet AND not become reckless.
So similar approach here - its safer to get the imaging AND remain rational in evaluating results & next steps.
that have a reason, as it's been demostrated by a lot of metastudies you can find on cochrane that there is usually much more worst outcomes and long term effects on the broad of the population when misdiagnosed by overdiagnosing than just simply saving an extra 0.01% (not real number)
the same reason of why for example now there is an advocacy to end yearly mammograms on older woman, because the number of them saved by that practice is inferior to the ones that are misdiagnosed and then put under other unnecesary medical practices that end up hurting more by unnecesary practices on a lot of them that would have never developed a cancer or under pressure to the ones that no one will be able to save no matter how sooner they got the diagnostic.
infinite constant and unnecesary medical tests is not the way for now, maybe in the future, but not now.
Full body scans have quite some history. If they were effective at routine preventive detection, the NHS would deploy them in a flash, because its cheaper right?
The problem is the false positive rate is >> catching unknown bad things.
its the same with breast cancer in the UK there is a 3.1% false positive rate. https://digital.nhs.uk/data-and-information/publications/sta... which requies follow ups. Now as breast surgery is reasonably uncomplicated (source: wife did breast surgery in training) its not _much_ of a risk and is worth it.
However, if its something in the liver, brain or spinal column, the risk its pretty high. This leads to a higher chance of injury from surgery vs stopping something unknown.
This is why something that actually identifies cancer cells is much better than looking for smears on an image. Unless you have monthly MRI scans, from birth, you are going to get nasty side effects from invasive investigations.
EDIT: also most people don't really understand the difference between CAT and MRI scans. CAT scans are much cheaper, faster, and better at finding cancer (you can use dies and junk). given the difference in cost, time and comfort, a lot of people will choose a CAT scan instead. However regular CAT scans will give you a much higher risk of cancer. Something the kardashians pushing whole body scans will neglect to tell you.
Thanks for the edit and even the NYT article obscures this.
My point on MRI is that they do not themselves have side effects.
If you have a doctor that immediately sends you for a bunch of CAT scans and/or cuts you open, then obviously there are side effects.
And why would you immediately jump to either? If it's the first ever scan, and you see something unusual it could be monitored by a 6month/1year ultrasound and/or MRI followup.
Unfortunately it doesn't seem like any of the direct cancer detection solutions are there yet either. There's a recent startup that claims something like 5% detection of stage 1 / 10% detection stage 2 / 25% detection stage 3 / etc on a set of cancers, but they also just accidentally mass-mailed a bunch of negative patients that they have cancer.
You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?
A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?
> You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?
yeah, this is badly expressed on my part. I was trying to get across that a single whole body scan without context (ie it hurts here, or it bleeds there or we suspect x) is difficult to interpret. think of it as a day's unstructured logs. Regular scans allows you to build up a picture of whats changing, and whats normal for you.
> A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?
I think routine targeted scanning is something that is worthwhile. The UK does a number of them, and they were normally based on evidence of outcome. Prostate/breast/cervical etc etc. I personally think the future of public health is something akin to getting each personal a vitals dashboard.
But, I'm not sure regular MRIs will give us that. if the evidence changes though, then it should be reassessed.
People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.
Have you tried obtaining the drugs by other means?
My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor.
Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.
I’m sorry for what you’re going through. I think there really should be a separate FDA category for people with a few years left to live. Still not available to the general public but something a physician should be able to recommend to terminal cases.
Have you tried directly calling or visiting the trial location and try to get in touch with the person administering these to see if you can get in that way. Alternatively if you’re rich you can commission a lab in India to make these for you. They have a lot of experience making the covid mRNA drugs so should be able to pivot relatively easily if you’re paying enough. Bharat labs made the Covax vaccine so maybe start there but I’m sure a bit of googling should bring up more labs.
You have nothing to lose man. If you’re too sick to call around I hope there is someone in your life who can. Go down swinging, contact an Indian/Chinese lab today.
I’m with you. I understand the ethical dilemmas of giving pharma unfettered access to sick people. Still, sick doesn’t automatically mean dumb. My wife reads medical journals and knows how to interpret them. I have much less (yet still more than most) medical experience than her, and I do risk analysis for a living. I think either of us are qualified to look at the statistics and make a rational decision about our own healthcare.
"I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months."
But then the numbers won't look as good for the drug company.
But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.
- I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you
but without sounding like he used the privileges he really had
Someone who died of an unrelated condition during the trial doesn’t push the science forward, though. They’re not worried about the risk to the patient when they deny entry to an existing trial: they’re worried about the risk to the data.
It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments.
The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence.
The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.
I was devastated when I learned about Richard's tumor, the molecular profile is also very aggressive. Already showing that immunotherapy does anything is a huge step, I hope it works well enough to keep him here a bit longer.
A great example of why to support "Right to Try" laws. Every terminal patient could choose to contribute to our understanding of treatment while also possibly improving their outcome. Through self-experimentation we could dramatically increase the pace of progress.
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.
> 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.
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.
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.
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.
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.
> 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?
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.
> 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 intussusception 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.
> 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
Agree. My mother had a very serious form of cancer (she’s luckily responded well to treatment) but she was overwhelmed by con men promising hope. Adding legitimate research makes this mix less toxic, not more
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.
I took HCQ for covid before the test results on that were in. It probably did nothing. I'm not sure how I would have benefited from it being prevented.
I think his Ive and HCQ points are pretty bad. I mean, it's cancer vs covid. Covid has a low mortality (very low) compared to cancer. Also, as you said it's not like those drugs killed you.
We are all already dying, but we only allow doctors to prescribe drugs and other treatments to patients.
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?
Regardless of all that, ultimately, you are advocating that people can't make their own decisions, that you and others should be in charge of what they can, or cannot do.
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.
> Regardless of all that, ultimately, you are advocating that people can't make their own decisions, that you and others should be in charge of what they can, or cannot do
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 one thing to have restrictions on what affect other people, like criminal laws to prevent anarchy.
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
And you want to open the Pandora's Box to legions of snake oil salesmen who will vastly outnumber the good players? see: Steve Jobs
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.
You can get rid of "with nothing to lose" and your statement would still be accurate. Sure, do the best you can to protect people, but give them the agency to make their own choices.
- Registration of alternative treatments with contact info (registered business address, etc.). Prevent fly-by-night hucksters from hiding in the dark.
- 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.
Not charging would prevent treatments like the one in this article which would presumably be expensive. I think better that a doctor has to sign off a bit of paper saying they feel the treatment is reasonable. They'd be reluctant to do that for snake oil.
I strongly agree. The makers of the treatment recoup their investment once the treatment goes into prod. But while in beta, it should be free to the patient. Without this rule, I can imagine a world where businesses make a living selling treatments that are never intended to get past the FDA's certificatuon process.
Everybody's terrified of the snake oil days, and almost nobody considers the way things were several decades ago, when cancer researchers were allowed to try things on patients without government approval, and we made much faster progress than we did after the FDA clamped down.
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.
For context, though, this was in the early 1960s when basically everything was low hanging fruit, so let's not assume the only variable at work is how much the FDA was clamping down.
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.
The fruit hung lower back then but now we have taller ladders. We've learned a lot since the 1960s.
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.
I guess by over regulating it on both sides. Companies shouldn’t be able to use weird methods and ethics with these laws. And we can have the right to try but we will have to go through a lot of process to really make it happen. Not just sign here and we are done.
Bureaucracy “nightmare” can be a good filter here for once.
The reason I got to know my grandmother and that she lived until I was 26 is that in the 70s she took part in such a trial when she was terminally ill.
I do sympathize. However, my old nextdoor neighbor had cancer, and he lectured me on how homeopathic medicines could get rid of all the "toxins" in our bodies. Naturally, he's dead now.
I think the problem is Scale. These experimental treatments are only available in small quantities. There are many, many people dying of cancer. Are they supposed to open factories for drugs that aren't even developed yet?
A friend of mine was diagnosed as terminal in his mid 20s (he had a giant mole underneath one of his fingernails that he never got checked out and it was later discovered to be aggressive melanoma that spread all over the place before they were able to amputate the finger).
He was given 12-18 months, so was able to get into a string of experimental treatments. He's the first patient in the world to have tried a few different treatments, and... the best part, he's still alive today turning 40 next year. He still has cancer, and it'll probably get the best of him at some point, but he's stoked to have made it 15 YEARS past his initial terminal diagnosis.
Obviously experimental trials can go the other way too, but it was a risk he was more than willing to take.
One anecdote about experimental cancer treatment: Expect the unexpected.
My mother had uterine cancer. As it progressed, she entered a study and took experimental drugs.
The cancer spread to her spine, which is highly unusual for uterine cancer. Because it's unusual, her oncologist went into denial and didn't treat her appropriately.
I remember listening to the oncologist say "it can't be spinal cancer, that doesn't happen" while I could see that the infectious disease expert was humoring the oncologist and checking my mom for spinal meningitis.
Exactly - deviate from the established protocol and you open up legal risks, possibly get fired from your practice (since most are big companies now and not individuals or partners), etc.
The irony was that the infectious disease expert checking my mom was very Chinese, both in appearance and accent.
If she (infectious disease expert) had the "western" "strong individualistic element," she might have pulled the oncologist aside and said, "look..." (If she hadn't already done that, but was merely seeing my mom so her oncologist could save face.)
The real issue is mindset and maturity. These issues happen in all cultures.
I'm sorry to hear about your mother. I have cancer, and I've definitely gotten a few "we've never seen x happen with y drug," but they've always been ready to accept that I'm just in the 0.00001 percentile or whatever that this happens to. They've never tried to treat me for something else, they believed that what was happening, was happening.
It makes a lot more sense when you consider the even specialized cancer docs maybe see a couple thousand cases max over their entire career. If someone takes an experimental cancer drug and dies of a heart attack, their doc may never even hear about it. Or if they do, just assume it was the cancer, or unrelated. Medicine is difficult.
I don't think it takes being a cancer researcher to know that an experimental treatment is riskier and could actually shorten your life. I get that some people need a lot of guidance/counseling to understand what the risks might be, but there are plenty of people capable of understanding the risks. Even for routine procedures people are rarely informed of the risks. Sure, they might get an Epic printout, but most skip or skim it and fhe doctor doesn't explain everything. Look at how many women are later surprised that the pill could increase their risk for breast cancer, gliomas, etc because it's colloquially known as being low risk with the benefit of not being pregnant. If you start reading off all the risks and truly getting people to conceptualize the probabilities, it would take too long and scare too many away.
If I'm terminal, hand me a packet and let me sign up for the experiment. If not, I might be buying/renting/borrowing some lab equipment, probably to an even bigger self risk (radioactive boy scout haha).
I read a post a while back by a guy who claimed to be managing a long term condition he had via homemade blood monitoring and pills containing something that earlier trials had shown were effective at managing the condition (I don't think it was diabetes, but it had a similar flavor to treating diabetes with something other than insulin.)
He explained that he eventually went blind in one eye because he had miscalculated the dose of something in his pill and eventually OD'd on it.
My reaction to the story was: "This is fantastic. More people should be doing this." (Obviously not the going blind part.)
What I do want is for it to be more widely recognized that we have in fact reached a point where it is possible for people to make their own blood tests, identify promising treatments in the scientific literature, and make their own medicine. I can't help but think that if that guy had been sharing his treatment with a like-minded community, someone else may have caught his dosing error.
Regarding treating diabetes with something other than insulin, it should be pointed out that there are several types of diabetes, and not all of them should be treated with insulin.
Type 2 diabetes for instance should be treated with fasting in most cases. It's not a popular treatment, probably because doctors tend to prefer to push pills down your throat, and also because fasting is scary, but it is way more effective than anything else out there.
IMO this is an example of how cancer needs to be attacked. We need an army, not a pharmaceutical company.
We need an army of biology lab workers that can do these bespoke attacks, perhaps enabled by software-generated compounds and formulae. I really don't want to say AI, but maybe even AI.
Once we get the manual labor approach largely solved, then iterate on efficiencies.
Immunotherapies seem to be "the answer". The issue is that they are a very complicated answer, to a complicated disease (cancer is actually thousands of genetic damage diseases under one moniker).
This story is Australia, pretty sure we have fairly good subsidised access to even these kind of things (once they’ve gone through all the trials). I know a few people who have had targeted treatments for cancer who aren’t incredibly well off, never did ask about the cost but I’m pretty sure they wouldn’t have the means to access it in the US system.
Yes, such treatments have been in trial for a couple decades at NIH, showing complete response in a segment of the patients for certain cancers. The therapies harness each individual's immune system to direct it's attack to the mutations specific to their tumors.
Iovance is on the brink (should have been approved in the next month or two, but has been delayed because of "staffing shortages" at the FDA) of getting FDA approval for Tumor Infiltrating Lymphocytes adoptive cell therapy.
Besides the special labs used for the cell processing (managed by Iovance), the therapy is not a whole lot different from stem cell transplants, so any hospital that helps patients with blood-bourn cancers can provide this new therapy to melanoma (and soon, other cancer) patients.
P.S. I'm an 11-year survivor post-TIL therapy for Stage 4 melanoma at NIH.
There's nothing preventing expensive treatments in Australia, e.g. via the private system, unless your drugs are listed on the Pharmaceutical Benefits Scheme in which case the government covers all or most of their cost (but it still won't cover labour and any other associated costs in the private medical system).
Twelve days after he was given the immunotherapy
drugs, Professor Scolyer had surgery to have
the bulk of his tumour removed.
If they were able to remove the tumor, was it incurable?
Afterwards, they were able to analyze the tissue in the (now removed) tumor to establish that the immunotherapy drug had performed far above anyone's expectations.
That is fantastic news, but it is not my impression from the article that the drug enabled the removal. So by "incurable" did they mean "only treatable by surgery", or am I missing something?
> If they were able to remove the tumor, was it incurable?
I think with the glioblastomas, you remove 99% of it, and the 1% of tissue that can't be scalpeled out just regrows the whole thing. But if I'm wrong, then the other possibility is that the 1% metastasizes. Either way.
Solid tumors that can be removed in a big chunk by surgery, are in a sense curable.
The problem is individual cells might fall off and those cells will grow into new tumors in other spots.
Immunotherapy will kill those cells. But if you tried immunotherapy to kill a big chunk of tumor the side effects might kill the patient - think never-ending fever and inflammation.
See you do both, you do surgery to remove the bulk of the tumor, and immunotherapy to vacuum up any lone cells.
That'll still be poor outcomes for brain tumors whose position makes surgery impossible.
If I'm not mistaken, also there are even a few that are just nearly impossible to cut... remember reading an account of one such that dulled a few dozen scalpels. The introduction of some new cutting tool at the time was encouraging.
BEFORE: we remove 99% by surgery, try and get the rest by radiation. outcome poor.
AFTER: we have proved that the immune system is attacking the tumour, this might remove the need for surgery, or means that they don't need to section as much around the tumour to be successful. Or it means that the brain gets attacked by the immune system.
Cancerous tumours will continue to grow if any cancer cells are left - surgery is usually necessary but won't cure it. Glioblastoma are some of the most aggressive brain tumours on top of that.
What's weird about this article (and maybe about its reception on HN, although it does further some popular narratives on this site) is that if you have ever known someone diagnosed with a glioblastoma you will be familiar with some very positive initial results after surgery, followed within a year by recurrence, 2 or three other experimental treatments, and very likely death within 2-3 years. That's the thing that is incurable, and while I hope for the best for the doctor, there's nothing about this article that suggests something substantially different in outcome from the immunotherapy. I would think we would have to wait maybe a year to really see anything outside the prevailing expectations - he was diagnosed in June.
I didn't get the impression that they were pushing the immunotherapy like a miracle cure, just that when the tutor was removed and biopsied they found evidence that it had done something when the traditional belief seems to be that the blood-brain barrier would have render it useless.
Some context is that Profs Scolyer and Long have recently had a lot of success with immunotherapy for melanoma used as a neo-adjuvant - that is, before surgery. Start the patient on immuno asap and then excise so the immune system is triggered to potentially clean up anything that has spread.
Surgery being undertaken doesn’t mean there’s an intent or expectation to cure: this is your point of confusion. Incurable doesn’t mean “we’ll never do anything to try and help”.
1) Some tumors (brain being one example) cause problems due to the space they take up and the pressure they exert on nearby organs. Removing a large part of the tumor stops this happening, until the tumour regrows. This hopefully means that majority of the patient’s remaining life is mostly free of these problems.
2) Debulking can also help with subsequent treatment, as there’s less tumor to have to be treated.
He is a doctor and he gets the life saving treatment... the plebes can die in pain and up till recently they didn't even being allowed medical marihuana...
I am really happy for the guy, but like others mentioned, everyone should be able to choose what they want to do...
Steve Jobs died because he refused treatment... so let us commoners have the same luxury
> He is a doctor and he gets the ... plebes can die in pain ...
Back in low-drama reality - "experimental" medical treatments have a very long, ugly history of failing to work, or of making the patient's condition even worse. And "the researchers were really trying to help the people..." has often been untrue.
Steve Jobs died because he initially refused rational treatment, then he aggressively pursued conventional treatment (liver transplant). The initial refusal thing is common - in my case, I refused to believe the symptoms (bloody stool) I had were something that needed to be dealt with.
In both our cases, neither of us had any qualifications to make a determination of treatment, and doing our own research wouldn't have helped. (I'm sure the Big Turmeric Cartel would have something to chime in with (one of the common "it'll cure you" paths.)
162 comments
[ 2.3 ms ] story [ 358 ms ] threadIt's a tough nut to crack, my thesis advisor passed away from glioblastoma at a relatively young age.
>> "I can only do this because I'm a cancer researcher and clinician and so inherently understand the risks," he said.
As a cancer survivor, and someone who lost a loved one to glioblastoma, I despise this mindset. The idea that us "common folk" aren't intelligent or educated enough to make the decision to join risky trials is maddening.
I fully understand and support this mindset when it's regarding minor diseases. But if someone has 6-9 months to live, and zero chance of survival, I think they have every right to choose to be used as guinea pigs.
I know my relative would have LEAPED at this sort of opportunity. She was given 6-10 months, and was dead by 4.
At the time, there was an on-going trial she was rejected for, because she had a minor preexisting condition, and thus is it was "too risky." I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months.
I am hopeful that the rapid development of the COVID vaccine may have flipped a switch in biotech, and may lead to more risky and experimental trials for truly deadly diseases, such as glioblastoma.
If not, I will continue to look to China for hopeful developments. They seem to have more relaxed barriers for trials, and I firmly believe this is one of the reasons their biotech industry is exploding at such a rapid pace.
OK well, it might also find early stage cancers that show no symptoms until past the point of no return!
MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years. As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers.
There are a wide range of cancers there really are no routine screenings for. Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others?
We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4.
I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.
A doctor jumping straight to invasive procedures seems to be a mix of poor risk management and rarity of this type of medical imaging.
My doctor for example, pointed out that actually in some East Asian countries, there are routine annual imaging tests done that pick up some of the types of cancer we do no screening for.
To me the reason we don't in US is simply how medical care is paid for - employer provided insurance, and some actuarial calculation that on the insured pool they'd spend more money on imaging than they'd save on high cost stage 4 cancer care. Personally I'm happy to advocate more for myself, even if it costs money.
The scary truth is modern western medicine is primarily optimized to extract revenue while reducing spending and improving patient outcomes is merely a side effect of that process. Even in places such as the UK NHS it's all about not finding out things we don't want to know so we don't have to spend money dealing with it.
This is why I look forward to when we can replace doctors (not nurses) with AI.
MRI scans are a fantastic source of revenue, as are treatments for things that don't actually need to get treated. Reducing those things are actually doing the opposite of the motivation you're claiming.
This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.
You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?
It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.
Anything that isn't completely reduced to an industrial process. i.e. we want to have a simple no-effort repeatable billable outcome for this or we won't do it and will claim doing so is counter productive or dangerous.
> It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.
And they're doing the establishment's dirty work by doing so.
To provide a concrete example, I'm in Canada, and my other half had to pay for private MRI and ultrasound scans to identify a lump that she was laughed out of the room by three successive doctors for claiming she had. The MRI got her finally referred to a surgeon that announced he'd never seen anything like it, removes it, end of story.
That's far from an isolated case. I know people in the UK that literally died from these antics.
At one point I was invited to the opening of some medical simulation centre, and the speeches were enlightening. Two things stay with me: tests in India demonstrated that qualified doctors were no better than unqualified doctors except when the qualified doctors were told some of the patients were faking as part of an experiment and they are being observed, but mainly "I read a study that showed ~5-10% of people in US hospital are there because of a medical mistake from a previous visit, so I laughed and commissioned an equivalent study to show how much better we are in Canada, except for us it was >15%". The person telling that story was rightly disgusted. Those are not numbers for a profession that respects patients in the slightest.
You will forgive people with actual experience on the receiving end of this nonsense for thinking that maybe it's not actually setup to provide the assistance it claims to provide, and is primarily for the aggrandizement of those engaged in the rituals.
So similar approach here - its safer to get the imaging AND remain rational in evaluating results & next steps.
the same reason of why for example now there is an advocacy to end yearly mammograms on older woman, because the number of them saved by that practice is inferior to the ones that are misdiagnosed and then put under other unnecesary medical practices that end up hurting more by unnecesary practices on a lot of them that would have never developed a cancer or under pressure to the ones that no one will be able to save no matter how sooner they got the diagnostic.
infinite constant and unnecesary medical tests is not the way for now, maybe in the future, but not now.
Not ever spec on an image should mean cutting someone open or blasting with radiation.
The problem is the false positive rate is >> catching unknown bad things.
its the same with breast cancer in the UK there is a 3.1% false positive rate. https://digital.nhs.uk/data-and-information/publications/sta... which requies follow ups. Now as breast surgery is reasonably uncomplicated (source: wife did breast surgery in training) its not _much_ of a risk and is worth it.
However, if its something in the liver, brain or spinal column, the risk its pretty high. This leads to a higher chance of injury from surgery vs stopping something unknown.
This is why something that actually identifies cancer cells is much better than looking for smears on an image. Unless you have monthly MRI scans, from birth, you are going to get nasty side effects from invasive investigations.
EDIT: also most people don't really understand the difference between CAT and MRI scans. CAT scans are much cheaper, faster, and better at finding cancer (you can use dies and junk). given the difference in cost, time and comfort, a lot of people will choose a CAT scan instead. However regular CAT scans will give you a much higher risk of cancer. Something the kardashians pushing whole body scans will neglect to tell you.
My point on MRI is that they do not themselves have side effects.
If you have a doctor that immediately sends you for a bunch of CAT scans and/or cuts you open, then obviously there are side effects.
And why would you immediately jump to either? If it's the first ever scan, and you see something unusual it could be monitored by a 6month/1year ultrasound and/or MRI followup.
Unfortunately it doesn't seem like any of the direct cancer detection solutions are there yet either. There's a recent startup that claims something like 5% detection of stage 1 / 10% detection stage 2 / 25% detection stage 3 / etc on a set of cancers, but they also just accidentally mass-mailed a bunch of negative patients that they have cancer.
You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?
A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?
yeah, this is badly expressed on my part. I was trying to get across that a single whole body scan without context (ie it hurts here, or it bleeds there or we suspect x) is difficult to interpret. think of it as a day's unstructured logs. Regular scans allows you to build up a picture of whats changing, and whats normal for you.
> A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?
I think routine targeted scanning is something that is worthwhile. The UK does a number of them, and they were normally based on evidence of outcome. Prostate/breast/cervical etc etc. I personally think the future of public health is something akin to getting each personal a vitals dashboard.
But, I'm not sure regular MRIs will give us that. if the evidence changes though, then it should be reassessed.
People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.
My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor.
Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.
Have you tried directly calling or visiting the trial location and try to get in touch with the person administering these to see if you can get in that way. Alternatively if you’re rich you can commission a lab in India to make these for you. They have a lot of experience making the covid mRNA drugs so should be able to pivot relatively easily if you’re paying enough. Bharat labs made the Covax vaccine so maybe start there but I’m sure a bit of googling should bring up more labs.
You have nothing to lose man. If you’re too sick to call around I hope there is someone in your life who can. Go down swinging, contact an Indian/Chinese lab today.
But then the numbers won't look as good for the drug company.
But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.
- I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you
but without sounding like he used the privileges he really had
It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments.
The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence.
The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.
You can follow his treatment on twitter
https://twitter.com/ProfRScolyerMIA
https://en.wikipedia.org/wiki/Right-to-try_law
Principally, I agree with right to try, but I'm not sure what appropriate safeguards would look like.
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 intussusception 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.
>Which vaccine are you referring to?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?
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.
- 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.
[0] https://en.wikipedia.org/wiki/Self-experimentation_in_medici...
I think the problem is Scale. These experimental treatments are only available in small quantities. There are many, many people dying of cancer. Are they supposed to open factories for drugs that aren't even developed yet?
He was given 12-18 months, so was able to get into a string of experimental treatments. He's the first patient in the world to have tried a few different treatments, and... the best part, he's still alive today turning 40 next year. He still has cancer, and it'll probably get the best of him at some point, but he's stoked to have made it 15 YEARS past his initial terminal diagnosis.
Obviously experimental trials can go the other way too, but it was a risk he was more than willing to take.
My mother had uterine cancer. As it progressed, she entered a study and took experimental drugs.
The cancer spread to her spine, which is highly unusual for uterine cancer. Because it's unusual, her oncologist went into denial and didn't treat her appropriately.
I remember listening to the oncologist say "it can't be spinal cancer, that doesn't happen" while I could see that the infectious disease expert was humoring the oncologist and checking my mom for spinal meningitis.
If she (infectious disease expert) had the "western" "strong individualistic element," she might have pulled the oncologist aside and said, "look..." (If she hadn't already done that, but was merely seeing my mom so her oncologist could save face.)
The real issue is mindset and maturity. These issues happen in all cultures.
He had surgery and they are not sure if the immunotherapy drug will work. Best of luck to him.
If I'm terminal, hand me a packet and let me sign up for the experiment. If not, I might be buying/renting/borrowing some lab equipment, probably to an even bigger self risk (radioactive boy scout haha).
He explained that he eventually went blind in one eye because he had miscalculated the dose of something in his pill and eventually OD'd on it.
My reaction to the story was: "This is fantastic. More people should be doing this." (Obviously not the going blind part.)
What I do want is for it to be more widely recognized that we have in fact reached a point where it is possible for people to make their own blood tests, identify promising treatments in the scientific literature, and make their own medicine. I can't help but think that if that guy had been sharing his treatment with a like-minded community, someone else may have caught his dosing error.
Type 2 diabetes for instance should be treated with fasting in most cases. It's not a popular treatment, probably because doctors tend to prefer to push pills down your throat, and also because fasting is scary, but it is way more effective than anything else out there.
We need an army of biology lab workers that can do these bespoke attacks, perhaps enabled by software-generated compounds and formulae. I really don't want to say AI, but maybe even AI.
Once we get the manual labor approach largely solved, then iterate on efficiencies.
Immunotherapies seem to be "the answer". The issue is that they are a very complicated answer, to a complicated disease (cancer is actually thousands of genetic damage diseases under one moniker).
Iovance is on the brink (should have been approved in the next month or two, but has been delayed because of "staffing shortages" at the FDA) of getting FDA approval for Tumor Infiltrating Lymphocytes adoptive cell therapy.
Besides the special labs used for the cell processing (managed by Iovance), the therapy is not a whole lot different from stem cell transplants, so any hospital that helps patients with blood-bourn cancers can provide this new therapy to melanoma (and soon, other cancer) patients.
P.S. I'm an 11-year survivor post-TIL therapy for Stage 4 melanoma at NIH.
In Australia?
Afterwards, they were able to analyze the tissue in the (now removed) tumor to establish that the immunotherapy drug had performed far above anyone's expectations.
That is fantastic news, but it is not my impression from the article that the drug enabled the removal. So by "incurable" did they mean "only treatable by surgery", or am I missing something?
I think with the glioblastomas, you remove 99% of it, and the 1% of tissue that can't be scalpeled out just regrows the whole thing. But if I'm wrong, then the other possibility is that the 1% metastasizes. Either way.
BEFORE: We remove 99%, the other 1% metastasizes, you live for six months
AFTER: We remove 99%, this medicine stops the other 1% in its tracks, you live out the course of your life
?
The problem is individual cells might fall off and those cells will grow into new tumors in other spots.
Immunotherapy will kill those cells. But if you tried immunotherapy to kill a big chunk of tumor the side effects might kill the patient - think never-ending fever and inflammation.
See you do both, you do surgery to remove the bulk of the tumor, and immunotherapy to vacuum up any lone cells.
If I'm not mistaken, also there are even a few that are just nearly impossible to cut... remember reading an account of one such that dulled a few dozen scalpels. The introduction of some new cutting tool at the time was encouraging.
BEFORE: we remove 99% by surgery, try and get the rest by radiation. outcome poor.
AFTER: we have proved that the immune system is attacking the tumour, this might remove the need for surgery, or means that they don't need to section as much around the tumour to be successful. Or it means that the brain gets attacked by the immune system.
1) Some tumors (brain being one example) cause problems due to the space they take up and the pressure they exert on nearby organs. Removing a large part of the tumor stops this happening, until the tumour regrows. This hopefully means that majority of the patient’s remaining life is mostly free of these problems.
2) Debulking can also help with subsequent treatment, as there’s less tumor to have to be treated.
I am really happy for the guy, but like others mentioned, everyone should be able to choose what they want to do...
Steve Jobs died because he refused treatment... so let us commoners have the same luxury
Back in low-drama reality - "experimental" medical treatments have a very long, ugly history of failing to work, or of making the patient's condition even worse. And "the researchers were really trying to help the people..." has often been untrue.
In both our cases, neither of us had any qualifications to make a determination of treatment, and doing our own research wouldn't have helped. (I'm sure the Big Turmeric Cartel would have something to chime in with (one of the common "it'll cure you" paths.)
I am glad you are well and overcame cancer.
Can you imagine being in the same situation, and seeing this doctor get "moved to the front of the line"? (Albeit in a different country).
I can't even imagine the frustration one would feel.
as historically conceptualized?