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(CBS News)   Appeal to emotion works. Dying kid will get experimental drug   (cbsnews.com) divider line 86
    More: Followup, experimental drug, appeal to emotions, emotion work, cancer survivor, St. Jude Children's Research Hospital, bladder infection, St. Jude, u.s. food and drug administration  
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3211 clicks; posted to Main » on 12 Mar 2014 at 2:34 AM (41 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2014-03-12 02:36:56 AM  
No mention of his parents being barred from legal action should these meds kill their kid, or turn him into a chud or something..
 
2014-03-12 02:37:27 AM  
And I get NOTHING? Grrrrrrr...
 
2014-03-12 02:37:52 AM  
You won't want to see him when he gets angry

www.thatericalper.com
 
2014-03-12 02:40:02 AM  
Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.
 
2014-03-12 02:41:35 AM  

stoli n coke: Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.


It would be nice if it were that simple. If this kid ends up dying on the meds, it can get the drug delayed from being widely available regardless if he was going to die anyways.
 
2014-03-12 02:42:20 AM  
Well, someone keep an eye out for the follow-up when he dies anyway, the parents sue even though there's absolutely no possible way the people doing the study are even partially responsible, the study fails from lack of funding, and thousands of other people with the disease are farked forever because it'll be another couple decades before someone cares enough to develop for this particular issue again.

Because the "I told you so"s and the associated emotional satisfaction are the only way in which this is gonna end well.
 
2014-03-12 02:43:00 AM  

stoli n coke: Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.


It was actually the FDA who was pushed into action here.

The reason the drug wasn't available was that if it had ended up having an adverse reaction, it could have effectively killed the chance of the drug ever coming to market (and thus potentially curing thousands more). What happened here is the FDA basically is giving them a free pass on this one.
 
2014-03-12 02:45:01 AM  
Unfortunately it's a gateway drug.
 
2014-03-12 02:45:38 AM  
Chimerix is definitely up there with Blackwater when it comes to intentionally evil-sounding names.

 A four-time cancer survivor at 7 and now this? He is not going to have a long life. I wish him the best, but is long-term outlook after having all of these problems does not look very good at all.
 
2014-03-12 02:47:35 AM  
I guess the threats and brow beating on twitter works.
 
2014-03-12 02:50:38 AM  

super_grass: I guess the threats and brow beating on twitter works.


The fact that people on Twitter can influence the FDA into giving experimental drugs to children is nothing less than horrifying.
 
2014-03-12 02:52:11 AM  
Basically I think, the FDA has said that if the kid dies after getting the drug, and short of the kid turning into a super-mutant, the company gets a mulligan.
 
2014-03-12 02:52:51 AM  

Jim_Callahan: Well, someone keep an eye out for the follow-up when he dies anyway, the parents sue even though there's absolutely no possible way the people doing the study are even partially responsible, the study fails from lack of funding, and thousands of other people with the disease are farked forever because it'll be another couple decades before someone cares enough to develop for this particular issue again.

Because the "I told you so"s and the associated emotional satisfaction are the only way in which this is gonna end well.


Nope.

The FDA made an exception and the drug company promptly released the drug.

Now watch as people find ways to be upset over reasons completely irrelevant to this case instead of breathing a sign of relief.
 
2014-03-12 02:56:55 AM  
I hope they're not able to sue if their kid dies while taking an experimental drug they demanded he be given.
 
2014-03-12 03:00:51 AM  

super_grass: Nope.

The FDA made an exception and the drug company promptly released the drug.

Now watch as people find ways to be upset over reasons completely irrelevant to this case instead of breathing a sign of relief.


Nope.  The FDA approved a new pilot trial, with a differing treatment regimen.  Meaning Chimerix put a lot of man-hours, money, and leverage behind getting this fast-tracked (they had to find an entire new subject pool, among other things).

Granting a compassionate use exception (with all the immunities that implies) is what the FDA  should have done.  What they  did do still leaves the company somewhat on the hook for the inevitable, they've covered their bases as best they can but the perception that they started the new trial specifically for the one kid opens them up really, really easily to malpractice damages.

// Though it does insulate the  original trial from the consequences of the kid's inevitable death, so it was their best option with the FDA continuing to be douchebags and the stupid, stupid people in the public blaming the company for the FDA's douchery.
 
2014-03-12 03:02:58 AM  
This'll be that drug that starts the zombie apocalypse, won't it?
 
2014-03-12 03:03:32 AM  

Awesome T-Shirt: stoli n coke: Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.

It would be nice if it were that simple. If this kid ends up dying on the meds, it can get the drug delayed from being widely available regardless if he was going to die anyways.


Not to mention the hundreds of dying kids who will do the same thing; the drug companies will have to give even more kids experimental drugs at tremendous cost; eventually they'll just say "f*ck it, we're not in the give-free-drugs-to-all business, we're in the research and development business and we can't afford to do this," shut down R&D completely and now nobody is making drugs for dying kids at all.

It's not that this one child is likely to sue, or even that a lot of kids are likely to sue. It's that these small companies that work on the cutting edge of medicine have a hard enough time coming up with new medications, developing and testing them costs a small fortune anyway, and then bringing them to market costs even more. If they could just hand them out like free candy, they would; but they cannot: They need that money to develop other drugs for other dying kids. Now that money is gone because poor dying child diverted some of it so people wouldn't cry on Twitter.

And next year, when he's dead anyway and Chimerix is out of business; will anyone be crying for either of them on Twitter? Hell no.
 
2014-03-12 03:04:01 AM  
So what happens to all the other kids who are or will be in that particular child's position? Do they get the experimental drug too?

Or do they get a response consisting mostly of, "Sorry, it's still an experimental drug. Come back with emotional internet supporters and a writ from the FDA and we'll talk, otherwise your kid is toast."

I'm okay with case-by-case decisions, really. But this child isn't going to be the only pediatric oncology patient with that particular kind of cancer. It's kind of shiatty to condemn other patients to death because they didn't get an outpouring of internet support that was able to convince the FDA to make an exception in this case.

And even if they do, then it introduces a strange precedent over just how many experimental drugs are able to be given if you have enough internet support behind your cause.
 
2014-03-12 03:05:08 AM  

Jim_Callahan: super_grass: Nope.

The FDA made an exception and the drug company promptly released the drug.

Now watch as people find ways to be upset over reasons completely irrelevant to this case instead of breathing a sign of relief.

Nope.  The FDA approved a new pilot trial, with a differing treatment regimen.  Meaning Chimerix put a lot of man-hours, money, and leverage behind getting this fast-tracked (they had to find an entire new subject pool, among other things).

Granting a compassionate use exception (with all the immunities that implies) is what the FDA  should have done.  What they  did do still leaves the company somewhat on the hook for the inevitable, they've covered their bases as best they can but the perception that they started the new trial specifically for the one kid opens them up really, really easily to malpractice damages.

// Though it does insulate the  original trial from the consequences of the kid's inevitable death, so it was their best option with the FDA continuing to be douchebags and the stupid, stupid people in the public blaming the company for the FDA's douchery.


So there are no winners in this situation pretty much?
 
2014-03-12 03:13:53 AM  
i242.photobucket.com
 
2014-03-12 03:16:43 AM  
the bigger problem is "that he will either die or he won't" and that people, organizations, and possibly even policymakers will jump to all sorts of overblown conclusions and i-told-you-sos based on what is essentially a spin of the roulette wheel (sorry,timmy).
 
2014-03-12 03:17:40 AM  

noblewolf: [i242.photobucket.com image 460x480]


Lulz. As much as Fark loves science very few are actually behind Darwin, as much as they like to joke about it. He'd be a political pariah should he exist today.
 
2014-03-12 03:27:19 AM  

robohobo: No mention of his parents being barred from legal action should these meds kill their kid, or turn him into a chud or something..


They will find a way to sue.  This is Murica after all.
 
2014-03-12 03:30:24 AM  
I'm sure this thread wont contain any capitalism-hating liberals eager to characterize the pharmaceutical company's actions as greed or heartlessness without comprehending the underlying issues.
 
2014-03-12 03:35:43 AM  

robohobo: noblewolf: [i242.photobucket.com image 460x480]

Lulz. As much as Fark loves science very few are actually behind Darwin, as much as they like to joke about it. He'd be a political pariah should he exist today.


Social Darwinism is politics, not science. I'm not sure Darwin was even aware of the term before his death.
 
2014-03-12 03:37:53 AM  
This could be a total mess if the kid does have an adverse reaction, the FDA doesn't move to block the drug, it gets into the market, and it causes a bunch of adverse reactions in other people.
 
2014-03-12 04:18:41 AM  

God-is-a-Taco: robohobo: noblewolf: [i242.photobucket.com image 460x480]

Lulz. As much as Fark loves science very few are actually behind Darwin, as much as they like to joke about it. He'd be a political pariah should he exist today.

Social Darwinism is politics, not science. I'm not sure Darwin was even aware of the term before his death.


While you are the best kind of correct, dying before passing on your genes is pretty much classical Darwinism in the biological sense of Survival of the Fittest.

I hope the drug works beyond all expectations and the kid gets a happy and long life. I don't give it very good odds, but he has a nonzero chance.
 
2014-03-12 04:37:46 AM  
Looking forward to follow-up article about the kid dying so I can post:  Still no cure for cancer.
 
2014-03-12 04:38:48 AM  

Bomb Head Mohammed: the bigger problem is "that he will either die or he won't" and that people, organizations, and possibly even policymakers will jump to all sorts of overblown conclusions and i-told-you-sos based on what is essentially a spin of the roulette wheel (sorry,timmy).


Actually I guarantee this kid will die unless this drug is something truly miraculous.  The real question is how soon will he die and under what circumstances and given his complicated medical history, compromised immune system, advanced infection, and generally shiatty luck. The child could die relatively quickly and the drug could have absolutely nothing with the death.  It is a PR move pure and simple and may still bite this company in the butt later and reduce the odds of individuals who may actually be helped by the drug may not get it in the future.  All because some 7 year old with a shiatty DNA and attention whore parents didn't accept the inevitable.  The only thing worse would be if they pulled a Jahi McMath after the kid passes.
 
2014-03-12 04:40:15 AM  

Jim_Callahan: Well, someone keep an eye out for the follow-up when he dies anyway, the parents sue even though there's absolutely no possible way the people doing the study are even partially responsible, the study fails from lack of funding, and thousands of other people with the disease are farked forever because it'll be another couple decades before someone cares enough to develop for this particular issue again.

Because the "I told you so"s and the associated emotional satisfaction are the only way in which this is gonna end well.


I've never seen any follow up on that girl whose parents sued to get her an adult lung and move her up the donor list in a shameful appeal, I think there was another kid shortly after that where something similar happened......and no more updates on the girl who is brain dead and was moved to a different hospital after her mother posted something about "she's doing better" (when she's probably not).
 
2014-03-12 04:44:35 AM  
hum, if we turn the FDA over to practicing physicians instead of the scientist that routinely
follow protocol to determine effectiveness of chemical interactions we might get
political results
 
2014-03-12 05:00:00 AM  

Daedalus27: All because some 7 year old with a shiatty DNA and attention whore parents didn't accept the inevitable.


Historically speaking, this is what parents did until very recently. I think we expect, and rightly so, that medical science makes heroic efforts to save sick children. Not only can we afford it as a society, but it advances the state of the the medical arts and sciences. That kid wants to live as much as anyone else, and the parents have some hope. This is the right thing to do, but the company also needs the legal cover to do it.
 
2014-03-12 05:09:44 AM  
I hope the whole thing goes down in flames after the kid inevitably dies. Kid dies, drug trials sink, drug company goes out of business...and the parents of this precious widdle snowflake and the other idiots responsible for this travesty get legally napalm'ed by the estates of all the people who the drug would have helped had one stupid kid, his moron parents, and the irresponsible media and their legions of drooling windowlickers not torpedoed it. fark you, kid. fark you, kid's parents. fark you, media. fark you, FDA. Maybe it's the lesson we need to show the "Twitter activists" and other various forms of misinformed scum that emotion has absolutely no place in decisions that affect a society as a whole.

Goddamn but I am angry right now.
 
2014-03-12 05:43:55 AM  

OhioUGrad: Jim_Callahan: Well, someone keep an eye out for the follow-up when he dies anyway, the parents sue even though there's absolutely no possible way the people doing the study are even partially responsible, the study fails from lack of funding, and thousands of other people with the disease are farked forever because it'll be another couple decades before someone cares enough to develop for this particular issue again.

Because the "I told you so"s and the associated emotional satisfaction are the only way in which this is gonna end well.

I've never seen any follow up on that girl whose parents sued to get her an adult lung and move her up the donor list in a shameful appeal, I think there was another kid shortly after that where something similar happened......and no more updates on the girl who is brain dead and was moved to a different hospital after her mother posted something about "she's doing better" (when she's probably not).


I figured they all got what they wanted and went back to living their lives.  Why do they need the media when their kids are doing as well as can be hoped (I'm assuming the brain dead girl is still brain dead, but the machines are doing their job).  But yeah, it would be interesting to get a real update.  I do agree with the above post that the fact Twitter followers and the media can get the FDA and politicians involved to override the opinion of doctors and other medical professionals is horrifying.
 
2014-03-12 06:15:34 AM  

Alexei Novikov: I hope the whole thing goes down in flames after the kid inevitably dies. Kid dies, drug trials sink, drug company goes out of business...and the parents of this precious widdle snowflake and the other idiots responsible for this travesty get legally napalm'ed by the estates of all the people who the drug would have helped had one stupid kid, his moron parents, and the irresponsible media and their legions of drooling windowlickers not torpedoed it. fark you, kid. fark you, kid's parents. fark you, media. fark you, FDA. Maybe it's the lesson we need to show the "Twitter activists" and other various forms of misinformed scum that emotion has absolutely no place in decisions that affect a society as a whole.

Goddamn but I am angry right now.


You're also absolutely wrong.

A death in a clinical trial does not mean the trial fails and the company goes bankrupt.

Also, if the medication *does* cause an adverse reaction, shouldn't we know it before it goes to market?

For those concerned about the fiscal longevity of the scrappy little drug company, perhaps if we better funded drug research out of our universities, we wouldn't need to worry about financial condsiderations in this sort of situation.

For those outraged that this happened due to social media pressure - welcome to the 21st century. The wisdom, or madness, of crowds is going to be driving public and private policy for a long time to come.
 
2014-03-12 06:16:12 AM  
cbsnews2.cbsistatic.com
Alright kiddo, gotta pick one.
 
2014-03-12 06:33:30 AM  
"Chimerix had said earlier that it could not comply with a compassionate-use request for several reasons, including the fact that many other sick children had filed such requests. "

Guess the rest of them can just die then since they didn't have as many twitter followers.
 
2014-03-12 07:07:41 AM  
IANAPharmD but, if the kid passes away wouldn't that only affect the drug being indicated for people under 18? Would it still affect the drug being indicated for patients over 18? Thanks, FARK PharmD's
 
2014-03-12 07:09:03 AM  

LadyHawke: OhioUGrad: Jim_Callahan: Well, someone keep an eye out for the follow-up when he dies anyway, the parents sue even though there's absolutely no possible way the people doing the study are even partially responsible, the study fails from lack of funding, and thousands of other people with the disease are farked forever because it'll be another couple decades before someone cares enough to develop for this particular issue again.

Because the "I told you so"s and the associated emotional satisfaction are the only way in which this is gonna end well.

I've never seen any follow up on that girl whose parents sued to get her an adult lung and move her up the donor list in a shameful appeal, I think there was another kid shortly after that where something similar happened......and no more updates on the girl who is brain dead and was moved to a different hospital after her mother posted something about "she's doing better" (when she's probably not).

I figured they all got what they wanted and went back to living their lives.  Why do they need the media when their kids are doing as well as can be hoped (I'm assuming the brain dead girl is still brain dead, but the machines are doing their job).  But yeah, it would be interesting to get a real update.  I do agree with the above post that the fact Twitter followers and the media can get the FDA and politicians involved to override the opinion of doctors and other medical professionals is horrifying.


Well if I remember correctly about the girl who got the lung, her disease will kill the transplanted one in not too long of a time, so I'm sure those parents will resurface if she doesn't pass away before then. I'd be more interesting in hearing if any of the people that she bumped from the list passed away while waiting for another lung to become available.

/Twitter and Facebook should have no influence on anything.
 
2014-03-12 07:13:54 AM  
Sometimes life just wants to murder you. Seems like this kid is one of those cases. Four instances of cancer and now increasingly fatal viral infection? The universe wants this kid dead, man.

/bummer
 
2014-03-12 07:17:32 AM  

Alexei Novikov: I hope the whole thing goes down in flames after the kid inevitably dies. Kid dies, drug trials sink, drug company goes out of business...and the parents of this precious widdle snowflake and the other idiots responsible for this travesty get legally napalm'ed by the estates of all the people who the drug would have helped had one stupid kid, his moron parents, and the irresponsible media and their legions of drooling windowlickers not torpedoed it. fark you, kid. fark you, kid's parents. fark you, media. fark you, FDA. Maybe it's the lesson we need to show the "Twitter activists" and other various forms of misinformed scum that emotion has absolutely no place in decisions that affect a society as a whole.

Goddamn but I am angry right now.


All of you who are concerned for the company forget one thing. Now that the kid gets the drug, people will have forgotten about him in 2 weeks.

The internet never forgets, but the people on it are awful attention whores who will have moved on to another cause by the time I finish this post.
 
2014-03-12 07:27:22 AM  

Strolpol: stoli n coke: Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.

It was actually the FDA who was pushed into action here.

The reason the drug wasn't available was that if it had ended up having an adverse reaction, it could have effectively killed the chance of the drug ever coming to market (and thus potentially curing thousands more). What happened here is the FDA basically is giving them a free pass on this one.


This was the only way it would happen.

Some people get really angry about this topic. It`s simple business law.

Do it, get punitive action leading to a less healthy business.

Get free pass? Hell why not, it will be good publicity even if the kid dies.
 
2014-03-12 07:37:01 AM  

Strolpol: stoli n coke: Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.

It was actually the FDA who was pushed into action here.

The reason the drug wasn't available was that if it had ended up having an adverse reaction, it could have effectively killed the chance of the drug ever coming to market (and thus potentially curing thousands more). What happened here is the FDA basically is giving them a free pass on this one.


shiat yeah!
 
2014-03-12 07:38:49 AM  
So, if it works 100% perfectly, then it'll get rid of the adenovirus....  and he'll just be a kid with multiple cancer recurrences, a non-working immune system, with all the meds and effects you'd have after a bone marrow transplant, a failed kidney, and internal bleeding?  That sounds... promising.
 
2014-03-12 08:02:32 AM  

robohobo: No mention of his parents being barred from legal action should these meds kill their kid, or turn him into a chud or something..


When I first read the story yesterday, I had an emotional reaction as a father. Then I came into the thread and folks were posting that it is a liability issue, which I agree with.
They should sign a waiver releasing the company of any liability if something bad happens. If this was my kid, and I was out of options, I would probably try it. What's the worst that can happen, compared to what the kid is going through now.

The drug needs to be tested right?

/usually try to stay with logic, when kids are involved it doesn't always work.
 
2014-03-12 08:03:25 AM  

stoli n coke: Congratulations, Chimerex, for being shamed into decency. I know the prospect of someone possibly living longer without giving you enough for a few boat payments is sickening.


Simpleton is simple.

Situation is not.
 
2014-03-12 08:09:45 AM  
All of this horrifies me. Not because of lack of compassion, but because of people grasping at straws and using emotional appeals to make things happen that should never happen.

This child is going to die. 4 recurrences by age 7?  The child is going to die. All that all of this emotional turmoil will do is postpone the inevitable.

There has been a rash of this - including the social media emotional drama. The kid with the lung transplant list, the kid who is brain dead, but the family refuses to believe it, this kid.... and there are many more.

Is anyone looking at the cost of all of this emotion?  Not the just the money, but the emotional toll, and the increasing stroll down the path of denial of reality of death?

It horrifies me.
 
2014-03-12 08:36:40 AM  

noblewolf: [i242.photobucket.com image 460x480]


Hey...we're gonna ever get to this if we kill off all teh dumbs...

1.bp.blogspot.com
 
2014-03-12 08:46:20 AM  

Unoriginal_Username: The drug needs to be tested right?


Which it was in the process of. FDA approval requires, well, science. Which means a rigorous, well planned, evaluation following stringent protocol.

What they have done here is say, "yea, thats great and all, but everyone on twitter reallllllly wants this kid to get the drug" and thrown that out the window. Beyond setting a terrible, terrible, precedent, you have essentially ruined the controls on your study to get this approved for everyone. Lets say they give it to the kid and he explodes. Incredibly unlikely, sure, but that means you now need to figure out if him exploding was related to this drug or not before you can bring it to market, and the burden is on the guys trying to bring it to market to do so. Even if it is simple for them to explain away, they still need to, and that takes time and money and delays the thing from being available to everyone.

More fearful though is the precedent side. Basically what the FDA has now been said is, "make enough noise, and we will make an exception for you" Which means now other drug companies and the FDA will be bombarded with requests like this for anything that shows a potential glimmer of hope. Just fielding all of that noise costs a ton of time and money, which will inevitably slow other things to market.

But I know, this is fark, and really every drug company is sitting on a scrooge mcduck sized bin of money (which also contains the secret cure to cancer they won't release as it isn't profitable) that they swim around in all day, and only spend about 10 minutes a week working on drugs, during Dr. Who commercial breaks.
 
2014-03-12 08:49:05 AM  
And i'm not faulting the parents. If i was a parent and it was, "Look, your kid is going to die, or we can try this and it might help" you can damn well bet i'll do whatever i can to get my kid that drug, and everyone else be damned. If anything good on them for caring that much to be able to pull this off.

The problem is the FDA should have been standing behind this company and not making it an emotional\political thing, and being the ones who said, "Look, this is a really sucky situation, but our job is to ensure the best interests of EVERYONE, and giving you access to this and potentially mucking things up and causing a distraction is not"
 
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