Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

One Drug to Shrink All Tumors

news.sciencemag.org

Post reply on HN
Print view View original

51–60 of 67 posts

Re: One Drug to Shrink All Tumors

#51

Post by sunnybunny »

wwwtyro wrote: post #3

Some heart-wrenching comments from the page: "Husband and father of 3, age 31, high grade spindle cell sarcoma, stage 4 with mets- help! nuclearcouple@hotmail.com or find me (spouse) on fb, Heather Cimino in Fort Myers, Fl, willing to travel anywhere, just save my husband!" "my wife has tumor that are killing her will you hurry up and get this sorted - is there anyway one can volunteer for a trial tim.parry@xtra.co.n…

Well, the treatment is moving to Stage 1 Human trials, these people should clearly get in touch and volunteer to be a part of the trials.

Re: One Drug to Shrink All Tumors

#52

Post by Symmetry »

roc wrote: post #28
maxharris wrote: post #22

Earlier quoted context omitted.

Why is it OK to lump honest physicians, researchers and patients in with snake oil salesmen and their victims? Why is it morally acceptable to have laws intended to help the people that don't care to tell the difference? Those laws come at the expense of those who do care, who take the trouble to figure things out. Why shouldn't we live in a free society where the best within us can make a difference, and take humani…

> "Why shouldn't we live in a free society where the best within us can make a difference, and take humanity forward?" Our free society lived with the alternative . And they collectively decided "the right to be defrauded is a false liberty, this is no the way forward, let us try another way." And you know what? We've moved further forward, faster since these regulations were put into place. When people have trust th…

We lived with the alternative, but could we judge the two properly? When someone dies due to an unsafe drug that makes for a very compelling story. When someone dies from something that could potentially have been cured with a faster drug approval process, well, those deaths show up only in faceless statistical aggregates and society had already come to accept that sort of death as natural.

All the drugs that turned out to be dangerous over the last few decades and had to be withdrawn spring easily to mind, but how many people know about the deaths of the people whose heart attacks could have been prevented if the FDA had allowed the first beta blockers at the same time as they came into use in the rest of the developed world? Not many, despite the death toll of the later dwarfing all the former combined.

Re: One Drug to Shrink All Tumors

#53

Post by noonespecial »

wwwtyro wrote: post #15
roc wrote: post #12

Earlier quoted context omitted.

The problem is that lay people have essentially no ability to distinguish between potential 'last shots'. And exemptions will invite snake-oil salesmen. It can be frustrating, but the rules weren't created in some blind bureaucratic power-grab. They're responses to actual problems that existed in their absence. They aren't without their downsides, but they remain better than the alternative on balance.

They aren't without their downsides, but they remain better than the alternative on balance. That's not a credible claim. Tell that to either of the two people that left those comments. Sure, there's risks inherent with experimental drugs, but these people are dying or losing loved ones. They don't give a damn, and none of us has any right to stop them from taking those risks with their own persons . Their bodies are…

For what its worth, I agree with you, but the other side is not so unreasonable as it seems. The risk is not to the dying. The risk is that selection bias (of the miracle survivors) might cause an ineffectual drug to creep down the chain of "desperateness" (from the truly desperate to the less so) until it possibly occludes treatments that do work.

Re: One Drug to Shrink All Tumors

#54

Post by DanBC »

learc83 wrote: post #39
DanBC wrote: post #33

Earlier quoted context omitted.

> If someone doesn't know enough to make the call, he knows enough to choose a physician who can. Unfortunately that is demonstrably not the case. There are many qualified, experienced, doctors who are happy to peddle nonsense. Even limiting yourself to conventional medicine it's hard to tell the effective medication from the less effective medication. > What right does anyone have to deprive anyone else of what migh…

>What right does anyone have to manipulate desperate dying people out of vast amounts of money on unregulated, useless, gambling? This already happens. I don't really see how allowing dying people to access experimental procedures is any worse than allowing dying people to pay for crystals, and "charged" water.

crystals and charged water don't tend to cost the same as a house.

I think I've changed my mind slightly. So long as people are properly informed - with very easy to understand information - I guess I'd let them access random experimental meds. I'd prefer that to be part of a rigorous study.

Re: One Drug to Shrink All Tumors

#55

Post by droopyEyelids »

wamatt wrote: post #46
roc wrote: post #12

Earlier quoted context omitted.

The problem is that lay people have essentially no ability to distinguish between potential 'last shots'. And exemptions will invite snake-oil salesmen. It can be frustrating, but the rules weren't created in some blind bureaucratic power-grab. They're responses to actual problems that existed in their absence. They aren't without their downsides, but they remain better than the alternative on balance.

>"lay people have essentially no ability to distinguish between potential 'last shots'" I'm sure you mean well, but this type of thinking really bothers me. For example, many of us here on HN, possess the critical reasoning skills to determine snake oil from a credible research lab. Given that there are almost no practicing oncologists present, we'd all likely qualify as lay people. However the central issue is a med…

>For example, many of us here on HN, possess the critical reasoning skills to determine snake oil from a credible research lab. Given that there are almost no practicing oncologists present, we'd all likely qualify as "lay people".

The fact that you think critical reasoning can help discriminate between a quack and someone selling real medicine indicates you don't have the ability to make that distinction.

The truth is, no one does. It takes a process with many checks, and even then snake oil makes it through.

Hell, the same people who make real medicine can have a lapse of judgment and make phony medicine. No one could tell, even their peers, without verifying the experiments performed.

It's not a far-fetched scenario. Prominent researchers fall from grace several times a year. Multinational drug companies sell medicines that perform worse than placebos.

Re: One Drug to Shrink All Tumors

#56

Post by ceejayoz »

maxharris wrote: post #5
ceejayoz wrote: post #4

Earlier quoted context omitted.

There is, "expanded access" or "compassionate use". http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocat...

How many months or years does that process take? Morally speaking, the judgement of a patient (and the physician he has chosen) must not be impeded even for an instant. The FDA renders individual judgement on these matters irrelevant, and the result is often death and slowed medical progress.

I'm only aware of the process because of a NYTimes (IIRC) article, which said they had a roughly two week wait for approval. Getting the pharmaceutical company to provide the med was significantly harder.

Re: One Drug to Shrink All Tumors

#57

Post by car »

wwwtyro wrote: post #7
maxharris wrote: post #5

Earlier quoted context omitted.

How many months or years does that process take? Morally speaking, the judgement of a patient (and the physician he has chosen) must not be impeded even for an instant. The FDA renders individual judgement on these matters irrelevant, and the result is often death and slowed medical progress.

I imagine these people are desperate enough to find other means to acquire an antibody that blocks CD47. I wonder what quasi- or il- legal means are available to them? Care to speculate? Edit: perhaps a set of crowd-sourced, extremely explicit instructions about how to manufacture, purify, and test such antibodies would be a start. With such a set of instructions, they might be able to find experts to help them under…

Strong word of warning! These antibodies are not human, but most likely mouse. They will illicit a strong immune response, since they are foreign to the human immune system. Furthermore, antibodies can be directed against many different locations on their target molecule (epitopes), CD47 in this case, and therefore it is very unlikely that they will compete with the ligand they are trying to block.

In brief: you will hurt people doing this and achieve nothing.

Re: One Drug to Shrink All Tumors

#58

Post by wfunction »

wamatt wrote: post #46
roc wrote: post #12

Earlier quoted context omitted.

The problem is that lay people have essentially no ability to distinguish between potential 'last shots'. And exemptions will invite snake-oil salesmen. It can be frustrating, but the rules weren't created in some blind bureaucratic power-grab. They're responses to actual problems that existed in their absence. They aren't without their downsides, but they remain better than the alternative on balance.

>"lay people have essentially no ability to distinguish between potential 'last shots'" I'm sure you mean well, but this type of thinking really bothers me. For example, many of us here on HN, possess the critical reasoning skills to determine snake oil from a credible research lab. Given that there are almost no practicing oncologists present, we'd all likely qualify as lay people. However the central issue is a med…

> For example, many of us here on HN, possess the critical reasoning skills to determine snake oil from a credible research lab. Given that there are almost no practicing oncologists present, we'd all likely qualify as lay people.

Ah, how did we miss such an obvious fact! Of course we computer scientists are naturally smarter than all the other laypeople.

Re: One Drug to Shrink All Tumors

#59

Post by pcrh »

sunnybunny wrote: post #51
wwwtyro wrote: post #3

Some heart-wrenching comments from the page: "Husband and father of 3, age 31, high grade spindle cell sarcoma, stage 4 with mets- help! nuclearcouple@hotmail.com or find me (spouse) on fb, Heather Cimino in Fort Myers, Fl, willing to travel anywhere, just save my husband!" "my wife has tumor that are killing her will you hurry up and get this sorted - is there anyway one can volunteer for a trial tim.parry@xtra.co.n…

Well, the treatment is moving to Stage 1 Human trials, these people should clearly get in touch and volunteer to be a part of the trials.

Here is a link to a related trial in South Carolina currently recruiting participants to examine a role for CD47 in myeloma. It is not a trial using the antibody cited in the OP's link, but a study to examine if targeting CD47 (and some other potential targets) makes sense in a human context, rather than just in a mouse.

Re: One Drug to Shrink All Tumors

#60

Post by gamblor956 »

maxharris wrote: post #8
wwwtyro wrote: post #3

Some heart-wrenching comments from the page: "Husband and father of 3, age 31, high grade spindle cell sarcoma, stage 4 with mets- help! nuclearcouple@hotmail.com or find me (spouse) on fb, Heather Cimino in Fort Myers, Fl, willing to travel anywhere, just save my husband!" "my wife has tumor that are killing her will you hurry up and get this sorted - is there anyway one can volunteer for a trial tim.parry@xtra.co.n…

There has got to be a way to address this need. Yes, there is. Fight for the right of each individual to follow his best judgement in regard to all matters pertaining to his own life. (If someone doesn't know enough to make the call, he knows enough to choose a physician who can.) Right now, timely experimental treatments are basically outlawed. What good is it to say that there's an FDA procedure to get around the c…

People who are desperate tend not to be the best test subjects--if there is any indication that the drug isn't work, they're likely to switch to another treatment. This is absolute havok on both safety and efficacy trials, which depend on participants sticking to their regime (whether or not their regime is the tested drug or a placebo). The end result is that the drug ends up taking longer to get to market than it otherwise would, assuming that it can get through the trials.

Yes, it sucks for the people who won't survive until the drug reaches the market, but the overall outcome for society is better.

Also, at the end of the day, taxpayer money is used to pay for most EOL care. The taxpayers have a vested interest in not exposing dying people to expensive and unproven treatments which could make their conditions even worse.

Post reply on HN