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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

#131

Post by wbl »

maxbond wrote: post #94
wbl wrote: post #83

Earlier quoted context omitted.

The FDA can approve a new drug in under a year as we saw with covid vaccines. Every time an effective drug is made and they don't people die waiting.

They approved one drug in under a year in a literal emergency (and it's deeply controversial that they did even that). That doesn't mean they can do that with everything that crosses their desk. I do buy the author's assertion that people should have right to expose themselves to experimental medicines when it could save their lives though.

Why doesn't it mean that?

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

#132

Post by netsharc »

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…

Couldn't this be solved by getting doctors' opinions? If docs says "This person's only chance of survival at the moment is chemotherapy, and it has a good chance of saving their life.", then, refuse the experimental treatment.

But if the docs say "With our current medical knowledge, this person is destined to die within $TIMEFRAME.", then, if the patient consents to try anything, even if it kills them earlier, why not?

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

#133

Post by exmadscientist »

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…

To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything. This is a crime, but it's very very hard to prove.

And these companies get very good at gaming the system, because that is their product. They are mechanisms to commit fraud, stealing all their patients' money and all their families' hope. This is a very bad thing. And, no, I am not making any of this up, but I dare not name names here. These companies also tend to be litigious!

The impact of this is extremely severe. First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Second, people lose faith in The System, because they think that the fraudulent treatments should have worked, so they lose faith in the good ones too. And third, R&D efforts can get redirected away: rare condition X already has a treatment, so let's put our efforts elsewhere (oh wait, no it doesn't, that was fraud, now there will never be a treatment).

We will not untangle the experimental treatments issue until we confront this problem. Just do not think that it is all in "good faith" here, or even "best effort": there is real fraud going on, committed by monsters that know exactly what they are doing to take their profit.

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

#134

Post by balderdash »

Not having some level of “right to try” is abhorrent.

Having said that there are two elements that I’m not quite sure how to adjudicate 1) where does one draw the line with regards to how sick someone needs to be to qualify for right to try, and 2) how do ensure that patients are actually getting a treatment with some resonance likelihood of success as opposed to some snake oil?

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

#135

Post by civilitty »

causality0 wrote: post #64
EA-3167 wrote: post #37

Earlier quoted context omitted.

People are, perhaps understandably, very eager to advance at a faster pace, always a faster pace. Nowhere is that more evident than in the case of people facing death regardless, but in addition to the issues you raised (early failures can lead to even worse delays) there are other ethical concerns. Terminally ill people are often understandably desperate, and I would be too in their position, no doubt about it. Thei…

We let people have assisted-suicide for reasons from homelessness to hearing loss, twenty thousand people a year. Why do we respect their self-ownership when they're trying to die but not when they're trying not to die? Why do we get to decide what is and isn't worth the risk?

> Why do we get to decide what is and isn't worth the risk?

It's not their risk to take. Getting a drug to market is a complex process that can be derailed by any number of mistakes ranging from the mundane like improper blood draw during clinical trials to the tragic like accidental deaths that puts public pressure on the FDA to shut it down or spook away investors. Any hiccup in this process can kill it and once a patent expires, the chances of someone bringing that drug to market is almost zero, regardless of its efficacy.

The vast majority of drugs and therapies are developed via private investment and many companies go public before they make even a cent of revenue to fund the clinical trials. Public sentiment is the driving force behind their stock prices because they're literally forbidden from making money until the FDA approves their drug. Lots of them go bankrupt every year before finishing clinical trials or releasing a product and rushing the process is quick ticket there.

Patients don't get to put at risk the decades of good a drug can do because they're desperate and afraid of dying.

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

#136

Post by matteoraso »

melling wrote: post #21
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…

This has been a common complaint for decades. We always want to try rush experimental drugs/procedures that “show promise”. How often do these drugs, etc turn out to effective? 25 years ago we wanted to rush gene therapy and that didn’t turn out well. Someone died. It probably set back gene therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC81135/ I think the solution is to invest more into medical research now, t…

>How often do these drugs, etc turn out to effective?

This is a big point a lot of people ignore. I feel terrible for the author, but if there hasn't been a single drug invented so far that has any real chance of curing him, it's extremely unlikely that this one out of reach drug is going to be the drug that can save his life. I don't really know much about medicine, but I'm pretty sure that progress is usually incremental as well, so you start out with drugs that cure some patients and work from there instead of having some massive breakthrough.

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

#137

Post by xk_id »

The reality of cancer is a bit paralysing to anyone who has had direct exposure to it and there is nothing really overstated about it in the common sense of culture. Everyone’s fight is different, because there are so many paths to take and they keep changing as research advances, but the time available is limited. Besides being restricted, cancer drugs are also notoriously expensive, but for the more self-determined individual there is the option of off-shore pharmacies (many based out of India) and perhaps even Chinese chemical labs (anything on AliBaba must be assumed to be completely unreliable; however, some of the labs which are referenced by scientific papers as suppliers are actually happy to do business after only a little bit of social engineering). Unfortunately this approach is limited to relatively simple pharmacological interventions; anything that requires complex medical procedures (including palliative care) and has to happen in a hospital will require normal legal compliance and the cooperation of a doctor. There are stories of people who have gone far and beyond to enrol into cutting edge clinical trials [1] – usually with the energetic support of a loved one. In those cases, even with the consent of a doctor, the logistics and expenses aren’t trivial. There is much to say in general about the questionable role of institutions who gate-keep access to medical procedures under the pretext of protecting reckless consumers – but it wouldn’t feel right to steer the conversation too much away from cancer.

> This makes it nearly impossible for patients to find an appropriate clinical trial, discouraging all but the most stubborn–people like Mike Hindt, and people like Stephanie Florence. By her own admission, Florence, 44, a photographer living in Lewiston, Idaho, had to “bulldoze” her way into a trial by being persistent to the point of obnoxiousness.

> When she found out she was a candidate for a new trial, she also learned another hard truth: trials don’t come to patients. Patients have to go to the trials.

> In August, she and her husband drove from Raleigh to Boston, despite having no place to stay. After a week in a hotel room paid for by their daughter, they wrote about their circumstances on a community blog. Several people in the area offered the couple rent-free housing during Price’s treatment. In order to pay for food and other expenses, the couple are trying to sell their home, and Price’s husband, laid off from his job at IBM, took a couple of part-time shifts a week at the outdoor-apparel store REI.

[1] https://time.com/4270345/immunotherapy-pembro-clinical-trial...

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

#138

Post by eggy »

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…

Do you have the citations for the three instances where "people died that might have lived otherwise."?

In this person's case, he will not live otherwise, so he has nothing to lose by trying an experimental therapy, although it appears to be too late anyway. Very sad.

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

#139

Post by haldujai »

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…

> Even if you want the experimental treatment, you cannot get it.

Says who? In terminal truly no-option diseases (e.g. glioblastoma multiforme) it’s pretty easy to get access to experimental therapies on compassionate grounds.

The challenge in this particular case brings us to:

> Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault.

This is a false dichotomy. What’s unethical is offering experimental therapy with ?? effect when there are evidence based palliative treatments (e.g. conventional chemotherapy) with proven overall survival benefit.

In cases where an experimental therapy has at least some limited evidence (i.e. suggestion it might work) it’s quickly approved and pushed into clinical pipelines, osimertinib/Tagrisso for lung cancer is a recent example of such a treatment.

No one is advocating or suggesting we just let people die.

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