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I am dying of squamous cell carcinoma, and potential treatments are out of reach

jakeseliger.com

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Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#121

Post by [deleted] »

adrr wrote: post #50
lr4444lr wrote: post #28

Earlier quoted context omitted.

The FDA could create a standard consent form for nonapproved treatment that patients and doctors would sign, which would indemnify the physician from legal repercussions, but they don't, and they bear full blame for that. The AMA would still have its own regulations about the limits of ethical experimentation, with the revocation of a medical license as punishment to serious offenders, and malpractice safeguards coul…

You can get get experimental drugs/treatments that aren’t approved by getting them under the clinical trial for that drug. The question is who pays for it? Cancer treatments are millions of dollars.

[deleted]

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#122

Post by yladiz »

nine_k wrote: post #112
riffraff wrote: post #14

Earlier quoted context omitted.

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other op…

I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.

C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#123

Post by maxbond »

chroma wrote: post #113
maxbond wrote: post #59

Earlier quoted context omitted.

If you think the fact that thalidomide, a deadly and basically worthless medication, being successfully blocked by the FDA is an example of a problem, then I'm a bit baffled? If you think that regulatory bodies make mistakes - then surely you want them checking each other's work? It's very frustrating to feel you are dying just shy of a breakthrough that can save you. I get that. And the author's contention, that the…

I’m saying that the FDA’s strictness cuts both ways. My beta blocker example was not a hypothetical. Europe approved the use of beta blockers to prevent heart attacks a decade before the US. Although the FDA approved propranolol in the 1960s, and timolol for glaucoma in 1978, they didn’t approve beta blockers for prevention of second heart attacks until the 1980s. This resulted in the deaths of over 80,000 Americans.…

It's one thing to say they should approve drugs faster and another thing to say they should rubber stamp anything that Europe and Canada approve.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#124

Post by sheeshkebab »

A_D_E_P_T wrote: post #72

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s ar…

Get rid of prescription requirement too - who needs to see a doc for extra $500 when I can go and pick my own med, and possibly better one.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#125

Post by valine »

riffraff wrote: post #14
tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other op…

Just because a treatment doesn’t work doesn’t make it snake oil. Snake oil implies intent to deceive. Untested drugs can be based on a strong theoretical foundation and still not work. I expect the majority of experimental treatments won’t work. We should be trying regardless, not just for the sake of the people taking the treatment, but for the countless people in the future who can benefit from the same treatment when it does works.

Also we should stop patronizing everyone. If someone understands the risk and their doctor agrees, just treat them.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#126

Post by tgv »

A_D_E_P_T wrote: post #72

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s ar…

I remember Softenon.

> it wasn't only because of low-hanging fruit.

Yeah, right. They had such advanced cancer medication back then.

> Give people with fatal diseases a "right to try" drugs that haven't passed safety testing -- and use that data.

That data is practically worthless.

I'm in favor of having people try out medication, but it will need to be heavily regulated. And we know what happens to regulation: a party comes along that doesn't like regulation, or gets bribed, and the regulation goes out the window. It's a good way to start another opium crisis.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#127

Post by DennisP »

peyton wrote: post #119
zaroth wrote: post #99

Earlier quoted context omitted.

Clinical trials are, I think always , free for the patient. The company developing the drug foots the bill.

That’s just not true.

Not always, but it's usually true.

> Patients generally do not have to pay extra out-of-pocket costs for treatments studied as part of a trial. Every trial is different, but the clinical trial’s sponsor usually pays for all research-related costs and any special testing.

> Typically, the patient or his or her insurance company is asked to pay for any routine tests, treatments, or procedures that would be required as part of standard cancer treatment. Before you join a clinical trial, you will receive an informed consent document that spells out exactly what you’ll have to pay for and what you won’t.

https://www.mskcc.org/cancer-care/clinical-trials/frequently...

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#128

Post by tux3 »

EA-3167 wrote: post #87
causality0 wrote: post #80

Earlier quoted context omitted.

Either way it's not as though people seeking death are being mislead as to the odds, are engaging in desperate reasoning that they'll be the lucky ones who get to live a bit longer This applies just as much to approved treatments as unapproved, for the same reasons, and has the exact same solutions such as having a third party with no vested interests explain to the patient. In fact it has those problems less than ap…

The key is that the approved treatments are proven to have the requisite efficacy, the risks that come with that are an acceptable tradeoff. The unapproved, often largely untested world of early breakthroughs doesn't have that guarantee of potential efficacy, it often JUST has risks.

It may help to not view the options as a binary choice between drugs approved under the current process and any drug not currently approved.

What constitutes the acceptable tradeoff is the heart of the matter. On the one hand, even the current approval process does not always guarantee efficacy (Aduhelm to mention it by name). Medical trials work with considerable uncertainty, and the risk/benefit tradeoff is always a question of probabilities. Even with the current process, there is no certainty or guarantee.

It is possible to take those probabilities and to talk about the expected number needed to treat (NNT) for a medication, the expected side effect profile, how many people might live and how many might die. Things that may sound cold, but that are already routinely done today.

It is hard to know where the tradeoff should be, how much margin of error is the right amount before something is approved, knowing that there is uncertainty even in large trials, but it's not a choice between the totally unapproved and the status quo. (Better yet, we should not model the choice as a single parameter that goes from more choice & more snake oil to less choice & more safety. It's also often possible to improve one aspect of a bureaucracy without it being a zero-sum game.)

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#129

Post by mustacheemperor »

nine_k wrote: post #112
riffraff wrote: post #14

Earlier quoted context omitted.

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other op…

I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.

If the treatment needs to be administrated by a doctor, it demands the resources of the hospital and connected system, for a novel process. It does introduce a real risk factor for the rest of the healthcare provider’s system and the other people counting on it. I don’t see the comparison you’re making at all, really - a novel treatment has completely different context from an abortion.

Talking about immunotherapies feels like oh yes of course it would be worth it…but should you also be able to print out a blog article about holistic medicine and demand the hospital follow that treatment plan for your illness? Should a person insisting their illness be treated with an untested therapy from a disreputable company get a hospital bed instead of you for the same condition because they arrived first?

IMO this seems like something where the burden on the medical system is at least as much of a factor as the risk to the patient.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#130

Post by toomuchtodo »

yladiz wrote: post #122
nine_k wrote: post #112

Earlier quoted context omitted.

I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.

C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.

Assisted suicide and euthanasia are better examples. If you have autonomy to die, you should have autonomy to die trying not to.
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