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

jakeseliger.com

341–350 of 486 posts

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

#341

The author seems to forget that entering a trial doesn't necessarily give you access to the treatment. You have as many chances to be in the control group receiving a placebo. And as bad, sad and frustrating as it sounds to someone in a desperate situation, it is for the greater good of many more human beings, protecting us from snake oil.

The greater good argument is repugnant in this case. He is going to die, and deserves an opportunity to do whatever is possible to save himself, including new and little-tested, and likely ineffective treatments. He literally had nothings to lose.

And in this case he would be actively helping humanity as well by being a test case. We would all gain knowledges and information from his treatment, if he could get it.

This policy hurts all of us.

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

#342
post #315

Earlier quoted context omitted.

That's fair, I'll admit I didn't check the inclusion criteria in the case of OP. I'll take your point, and I appreciate the time you took to write a good response, though I've read about enough examples other than the current article that I feel this may be rejecting a wider pattern on the details of the current submission (but maybe I'm wrong, and they all happened to be incorrect for similar reasons). But I'd like…

Please note I am speaking only for the world of oncology as that's my practice focus and what I know best. > But I'd like to hear your thoughts on the broader argument of being more aggressive with trials in general. What sticks with me each time this argument comes up, regardless of the particular situation, is this idea that despite some mechanisms for accelerated approvals, we are still far slower than we could be…

Thank you. I really appreciate your patience and your careful replies, as well.

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

#343

I feel somewhat closer to this person because I was once in his position as a child fighting a neuroblastoma in 1981 and some how my mother found a way to get me on an experimental list which saved my life. Half of the kids that took the drug died by the time they were teens due to heart failure, obviously I wasn't one of them, but am thankful for the chance to live a full life. When the odds are against survival, th…

> When the odds are against survival, there shouldn't be any rules limiting treatment, if it means even a slightly higher chance of winning.

I agree with you. But the FDA would ask you to rigorously define "slightly higher chance of winning" -- and prove it. In the event you cannot do this, they believe that letting you try an experimental drug would be more unethical than letting you die of neglect.

So I'd rephrase that statement of yours: "When the odds are against survival, there shouldn't be any rules limiting treatment, regardless of type of treatment or odds of efficacy." ("When the odds are against survival" can be quantified, e.g. a 90% chance of dying within a year.)

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

#344
post #321

Earlier quoted context omitted.

> Most drugs fail. But getting the drugs that do work to patients even a year earlier may be a much larger benefit than the cost of giving people with serious diseases broader choices, in addition to the current best known standard. This is contradictory. Most drugs fail, how do we identify the efficacious ones other than through trials? Depending on the anticipated efficacy from early trials as compared to existing…

>This is contradictory. Most drugs fail, how do we identify the efficacious ones other than through trials? One idea is to make trials somewhat less costly by relying more on post-approval monitoring, but there are more subtle critiques of the processes that try to address perceived inefficiencies at the organisation/bureaucratic level rather than just adjusting a single big strict/lenient dial. Some drugs do not mak…

> Unfortunately, the best I can point to is a series of blog posts and informal discussions, I'm not aware of any formal published evidence. I remember a blog post on ACX post aducanumab (https://astralcodexten.substack.com/p/adumbrations-of-aducan...). The "FDA delenda est" catchprase leads to several more posts.

I'm a radiologist by training with an interventional oncology component in my practice so I can really only speak to acute care emergencies and cancer with any degree of expertise.

Cancer, heart attacks, strokes, aneurysms are different because there's a time crunch. In these situations FDA approval comes quickly for new medical devices and imaging tests. New aneurysms occlusion devices, stent grafts, and thrombectomy devices are all quickly approved with shortened review processes. Sometimes this has been to our detriment (e.g. early abdominal aortic/EVAR grafts which all leaked and caused disasters when the patient needed re-operation).

In these cases we did exactly what you're suggesting with:

> One idea is to make trials somewhat less costly by relying more on post-approval monitoring

How this translates to other diseases like Alzheimer's is not in my wheelhouse. I assume the process is more strictly adhered to in these cases, but it presumably should be because the potential harm of delaying is seemingly less important unless we're discussing disease-modifying treatments that require early initiation.

In your post the author mentions COVID-19 vaccinations, these were made available before full FDA approval. COVID-19 was highly politicized and the entire process did not follow typical medical procedures. Honestly the evidence that has come out for them isn't very compelling (omicron and later) and largely why most places have dropped vaccination requirements. I'm not sure that this is a good example of the "FDA's failure".

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

#345
post #237

Blaming the FDA is popular but the problem is not the FDA itself. Drug manufacturers are part of the problem. 1. When the FDA has fast-tracked drugs, drug makers have taken advantage of this to hide data, lie, and refuse to comply with timelines for proving those drugs work. https://www.npr.org/sections/health-shots/2022/07/22/1110830... 2. When these accelerated drugs are found to not work or cause harm, the manufac…

You're missing the part where the FDA has a revolving door with the biggest pharma companies. To think the FDA is some flawed, but impartial, judge of drugs is the key problem. The FDA is controlled by big pharma. No more, no less.

Huh? I literally said that.

But that's not the main problem here. You would expect the FDA to approve everything by that theory.

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

#346
post #342

Earlier quoted context omitted.

Please note I am speaking only for the world of oncology as that's my practice focus and what I know best. > But I'd like to hear your thoughts on the broader argument of being more aggressive with trials in general. What sticks with me each time this argument comes up, regardless of the particular situation, is this idea that despite some mechanisms for accelerated approvals, we are still far slower than we could be…

Thank you. I really appreciate your patience and your careful replies, as well.

No problem. I appreciate the discussion, it's good for me (and medicine in general) to be challenged on held beliefs as things tend to devolve insidiously in this field.

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

#347
post #204

Earlier quoted context omitted.

It appears that he is in New York, which doesn’t have a right to try law on the books.

If that is the reason, perhaps temporarily moving to another state might help? The author appears to still be mobile.

Absolutely, the closest state to NY with a "right to try" law is Connecticut. Pennsylvania also has one. https://righttotry.org/in-your-state/

Edit: Also, the federal law applies regardless of location: https://righttotry.org/rtt-faq/

"I do not live in a state with a Right to Try law. Can I still use Right to Try?

"Yes. S.204 makes Right to Try the law of the land. So long as a patient and treatment meet the qualifications of the federal law, Right to Try applies, regardless of whether the patient’s state adopted Right to Try."

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

#348

There should be a universal law in human rights stating anyone can take anything into their own bodies and governments can never, ever prevent them. Governments/regulators deciding what you can put into your body is beyond ridiculous: applies to all substances and drugs. Inform about the potential risks and effects: sure. Prevent: never.

Gets complicated, fast, when you start considering the legal concept "of sound mind and body" - why it exists, what it means, when and where it finds use... For a good historical case, Jonestown.

"Regulation" vs "Information" also gets complicated, fast, when you consider global supply chains - for recentish news, checkout the stuff on heavy metals in Trader Joe's chocolate - how does all that information propagate to the final consumer? How does that consumer have the knowledge, skills, and time to process it?

(As with all things, IMHO, it's about balance, and, IMHO, balance comes from forces in opposition. "You are the ultimate authority on your body" is one force.)

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

#349

There should be a universal law in human rights stating anyone can take anything into their own bodies and governments can never, ever prevent them. Governments/regulators deciding what you can put into your body is beyond ridiculous: applies to all substances and drugs. Inform about the potential risks and effects: sure. Prevent: never.

> anyone can take anything into their own bodies and governments can never, ever prevent them.

Thought experiment: There is a magic drug or parasite where any dosage (whether deliberate, accidental, or fraudulent) will force the person into a single-minded violent quest to get another dose.

For the next month, another hit is the most important thing in their world, even if that means selling everything they own, cutting off their own leg, or murdering their children. Repeated doses cause mental confusion and are eventually fatal.

Are you still comfortable saying that nobody can make any law against the distribution or consumption of THAT substance?

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

#350
Some FDA APPROVED cancer medication cause many severe side effects, for example, Opdivo/Nivolumab[1], my father used it and it seems to help, but caused other long term side effects, which seems will never pass. 1: https://www.opdivo.com/potential-side-effects
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