If you can read this, either the style sheet didn't load or you have an older browser that doesn't support style sheets. Try clearing your browser cache and refreshing the page.

(Chicago Sun-Times)   "Look, we'd love to give you this experimental drug for your dying son because it'll probably help cure him, but we can't because his profile doesn't fit the one we made up for test cases"   (suntimes.com) divider line 134
    More: Sick, experimental drug, Shire, Chicago Airports, Medicine study, Phase II, Food and Drug Administration, Mundelein, competitiveness  
•       •       •

8235 clicks; posted to Main » on 16 Feb 2014 at 9:51 PM (26 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



134 Comments   (+0 »)
   
View Voting Results: Smartest and Funniest

First | « | 1 | 2 | 3 | » | Last | Show all
 
2014-02-16 09:55:47 PM
Wasn't Matt Damon the lawyer in this case?
 
2014-02-16 09:56:13 PM
What about the profitability?  Shouldn't that be central to the discourse?
 
2014-02-16 10:00:27 PM
Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.
 
2014-02-16 10:00:29 PM
But Shire, the Ireland-based pharmaceutical company

Filthy Hobitses!
 
2014-02-16 10:01:18 PM
I'm pretty sure this is a rare case where pharmasutical companies are being decent and human.

They are avoiding making this kid's life shorter and more painful.
 
2014-02-16 10:03:53 PM
If it doesn't work or if he has an adverse reaction they'll sue.
 
2014-02-16 10:04:10 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


This

This

This

This
 
2014-02-16 10:05:35 PM
Luckily some quack can sell him asbestos pills from the internet in Tijuana
 
2014-02-16 10:06:59 PM

fusillade762: But Shire, the Ireland-based pharmaceutical company

Filthy Hobitses!


Butt Shire, home of the Thunderbutt hobbit clan.
 
2014-02-16 10:09:12 PM
somewhere, in an alternate timeline:

"Money grubbing pharmaceutical company pushes dangerous experimental drug on unsuspecting family. Their son's skin starts to melt off and he spends the final week of his life in total agony"
 
2014-02-16 10:10:54 PM
Good thing they are using emotional appeals in order to paint the drug company as villains for not giving out unproven drugs willy nilly. I mean, what's the worst that can happen to affect the approval of a perfectly useful drug than just giving it to anyone and then having them die gruesome deaths?
 
2014-02-16 10:12:14 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


If only there were a way to test drugs before we give them to people to make sure they work. If only.
 
2014-02-16 10:14:15 PM
Did they raise money or just signatures? If they have money they could secretly hire one of the chemists away to develop the drug and administer it to the kid in private. There would no be no change in the kid's condition for weeks, then suddenly one day he's all better. Over the next few months he grows strong...perhaps too strong? Eventually he begins to take on Fly-like physical characteristics. He demands to have the drug administered in higher and higher doses. When the chemist refuses, the kid snaps him like a twig. He has become intelligent enough to create the drug himself, and he's aging rapidly. "You have to stop!", his girlfriend exclaims. "Stop? The next stage of human evolution? I am becoming more powerful by the hour. I will change this planet...": he's ignorant, perhaps willfully, to the changes he is undergoing. By the end he has become nothing more than a grotesque husk of what was once a man. Eventually he explodes before his girlfriend's eyes. 6 months later...we see his girlfriend staring out a window at the city. The camera pans down and we see she is noticeably pregnant. Directed by David Cronenberg
 
2014-02-16 10:16:08 PM

anuran: If it doesn't work or if he has an adverse reaction they'll sue.


This. Of course, if they don't get the drug they'll sue when he dies.
 
2014-02-16 10:18:27 PM
unless the patient can somehow be included in a manner which benefits the study, there is no reason to administer that treatment. Haphazardly including them in an experiment is detrimental to science.
 
2014-02-16 10:20:23 PM

Sudo_Make_Me_A_Sandwich: ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.

If only there were a way to test drugs before we give them to people to make sure they work. If only.


This isn't 'Nam, there are RULES
 
2014-02-16 10:20:45 PM
So we're advocating skipping drug trials and giving doctors the ability to give children prescriptions for whatever untested stuff they want?
 
2014-02-16 10:22:32 PM

you are a puppet: Did they raise money or just signatures? If they have money they could secretly hire one of the chemists away to develop the drug and administer it to the kid in private. There would no be no change in the kid's condition for weeks, then suddenly one day he's all better. Over the next few months he grows strong...perhaps too strong? Eventually he begins to take on Fly-like physical characteristics. He demands to have the drug administered in higher and higher doses. When the chemist refuses, the kid snaps him like a twig. He has become intelligent enough to create the drug himself, and he's aging rapidly. "You have to stop!", his girlfriend exclaims. "Stop? The next stage of human evolution? I am becoming more powerful by the hour. I will change this planet...": he's ignorant, perhaps willfully, to the changes he is undergoing. By the end he has become nothing more than a grotesque husk of what was once a man. Eventually he explodes before his girlfriend's eyes. 6 months later...we see his girlfriend staring out a window at the city. The camera pans down and we see she is noticeably pregnant. Directed by David Cronenberg


You win.
 
2014-02-16 10:24:07 PM

Delta1212: So we're advocating skipping drug trials and giving doctors the ability to give children prescriptions for whatever untested stuff they want?


That or we're entering an age when drug trials are going to be dictated by the courts
 
2014-02-16 10:24:16 PM
i17.tinypic.com
 
2014-02-16 10:25:39 PM

you are a puppet: Did they raise money or just signatures? If they have money they could secretly hire one of the chemists away to develop the drug and administer it to the kid in private. There would no be no change in the kid's condition for weeks, then suddenly one day he's all better. Over the next few months he grows strong...perhaps too strong? Eventually he begins to take on Fly-like physical characteristics. He demands to have the drug administered in higher and higher doses. When the chemist refuses, the kid snaps him like a twig. He has become intelligent enough to create the drug himself, and he's aging rapidly. "You have to stop!", his girlfriend exclaims. "Stop? The next stage of human evolution? I am becoming more powerful by the hour. I will change this planet...": he's ignorant, perhaps willfully, to the changes he is undergoing. By the end he has become nothing more than a grotesque husk of what was once a man. Eventually he explodes before his girlfriend's eyes. 6 months later...we see his girlfriend staring out a window at the city. The camera pans down and we see she is noticeably pregnant. Directed by David Cronenberg


I'll contribute money. I don't care if its for the remake, or to make this a reality with the kid.
 
2014-02-16 10:25:53 PM

InsaneJelloTroll: you are a puppet: Did they raise money or just signatures? If they have money they could secretly hire one of the chemists away to develop the drug and administer it to the kid in private. There would no be no change in the kid's condition for weeks, then suddenly one day he's all better. Over the next few months he grows strong...perhaps too strong? Eventually he begins to take on Fly-like physical characteristics. He demands to have the drug administered in higher and higher doses. When the chemist refuses, the kid snaps him like a twig. He has become intelligent enough to create the drug himself, and he's aging rapidly. "You have to stop!", his girlfriend exclaims. "Stop? The next stage of human evolution? I am becoming more powerful by the hour. I will change this planet...": he's ignorant, perhaps willfully, to the changes he is undergoing. By the end he has become nothing more than a grotesque husk of what was once a man. Eventually he explodes before his girlfriend's eyes. 6 months later...we see his girlfriend staring out a window at the city. The camera pans down and we see she is noticeably pregnant. Directed by David Cronenberg

You win.


Seconded.
 
2014-02-16 10:29:01 PM

mike_d85: I'm pretty sure this is a rare case where pharmasutical companies are being decent and human.

They are avoiding making this kid's life shorter and more painful.


It's already going to be short and painful.
 
2014-02-16 10:30:29 PM
"Should a dying child receive an unproven experimental drug even if the patient doesn't fit within a carefully designed clinical trial?

No.


Been to NIH, like many others.  Seen kids with the badges that are a different color.    50,000 signatures from people who have no skin in the game mean nothing.
Drug manufacturers are a blessing to us.    If they don't want to do it, there are good reasons.
 
2014-02-16 10:30:55 PM
FTA: "For two years, the Fowlers have pleaded with Shire to let their son be part of the clinical trial or get the drug through compassionate use, including during a brief meeting with the company's CEO, Dr. Flemming Ornskov, in a Chicago airport hotel in January. An advocate for the Fowlers, Andrew McFadyen of The Isaac Foundation, a nonprofit group focused on treatments for rare diseases, started the meeting by stating, "An immoral decision remains immoral if delivered in one's face," and said that if Shire was still choosing death over saving a life then the meeting was over, according to Jamie Fowler.
Shire "delivered the same grim news, so we upped and walked out," Jamie Fowler said in an email."

That seems like an odd negotiating tactic:

"Before we begin to once again beg for your help, allow me to say that you have no morals and that if you tell us 'no' again, we're leaving."

"Okay, no."
 
2014-02-16 10:30:57 PM

InsaneJelloTroll: you are a puppet: Did they raise money or just signatures? If they have money they could secretly hire one of the chemists away to develop the drug and administer it to the kid in private. There would no be no change in the kid's condition for weeks, then suddenly one day he's all better. Over the next few months he grows strong...perhaps too strong? Eventually he begins to take on Fly-like physical characteristics. He demands to have the drug administered in higher and higher doses. When the chemist refuses, the kid snaps him like a twig. He has become intelligent enough to create the drug himself, and he's aging rapidly. "You have to stop!", his girlfriend exclaims. "Stop? The next stage of human evolution? I am becoming more powerful by the hour. I will change this planet...": he's ignorant, perhaps willfully, to the changes he is undergoing. By the end he has become nothing more than a grotesque husk of what was once a man. Eventually he explodes before his girlfriend's eyes. 6 months later...we see his girlfriend staring out a window at the city. The camera pans down and we see she is noticeably pregnant. Directed by David Cronenberg

You win.


This
 
2014-02-16 10:31:42 PM
I thought we wanted to keep kids off drugs

/D.A.R.E.
//biatches
 
2014-02-16 10:33:50 PM

Delta1212: So we're advocating skipping drug trials and giving doctors the ability to give children prescriptions for whatever untested stuff they want?


Only if the kid's story tugs the heartstrings and fogs the brain enough
 
2014-02-16 10:37:05 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


Shush now. There is ignorant outrage to be had!
 
2014-02-16 10:37:38 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


This.

Also, the reason you can't sign a paper and get an experimental drug anyway on a waiver is that a bunch of assholes signed waivers and then sued the hospitals/doctors  anyway, because apparently the meaning of "experimental" wasn't clear enough, and then the courts  accepted the cases instead of dismissing them out of hand and in some cases rendered judgments.

You can't farking have it both ways, either you can sign away your legal rights and get experimental drugs, or you can sue/harass people when the experimental drugs don't work.  And the people have very clearly spoken that they want the second one, so no off-study drugs for you.
 
2014-02-16 10:38:27 PM
FTFA: Gone is his ability to say "sis" for his sister, Juliet.

I'd say the outlook for this kid is about as bad as it can get... Hunter syndrome basically sounds like the nastiest form of Alzheimer's, except for a kid.  What the hell kind of side effects can possibly be bad enough that a 6 year old boy forget his own mother?  Give him the damn medicine already!
 
2014-02-16 10:38:32 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


That is correct, and that is how clinical trials work.  I know because I am currently in one, and the number of times I could have been removed for any reason are staggering if you take the time to read the consent form you sign when they consider you, and as I go through, I still can be removed for a variety of completely legitimate reasons.  Clinical trials are million-to-one shots at best to get in and the odds are only slightly better to stay in.

/ stage 4 cancer
// got into a trial by the skin o' my teeth
/// if I'm really lucky, I'll get 3 years of a drug that could give me maybe a couple years of remission
 
2014-02-16 10:39:44 PM

Delta1212: So we're advocating skipping drug trials and giving doctors the ability to give children prescriptions for whatever untested stuff they want?


What could possibly go wrong?
 
2014-02-16 10:40:23 PM
I think we should be able to sign waivers and get experimental drugs, but the family is wrong in this case. courts need to not let people sue so easily, and let such waivers happen in extraordinary cases.  the patient will die anyway soon.
 
2014-02-16 10:41:06 PM
This reminds me of the old saying in football..."When the QB throws the the ball, 3 things can happen, and 2 of them are bad."

Well, it looks like it is 4th and long. Throw the ball!
 
2014-02-16 10:42:34 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical. It might save your son, and it might reduce his last few days to shear agony, or something similar. That's the point.


Of course it's taking a gamble.  When one of the paths is certain death you might choose to take the gamble, though.

ultraholland: unless the patient can somehow be included in a manner which benefits the study, there is no reason to administer that treatment. Haphazardly including them in an experiment is detrimental to science.


Except it does no harm to science.  He doesn't meet the test requirements, he shouldn't be counted one way or the other.

Delta1212: So we're advocating skipping drug trials and giving doctors the ability to give children prescriptions for whatever untested stuff they want?


No.  This is a drug in Phase II human trials.  Without it the kid has no chance at all.  If the drug doesn't pan out he dies also.  If the drug works the kid might live.


I have long advocated that the FDA grant compassionate use for anything in Phase II or beyond when they have basically no chance of living without it.
 
2014-02-16 10:45:39 PM

Loren: I have long advocated that the FDA grant compassionate use for anything in Phase II or beyond when they have basically no chance of living without it.


Then you should also be advocating for civil immunity for the manufacturers in those cases. Without it, nothing is going to change.
 
2014-02-16 10:49:50 PM
Loren:

No.  This is a drug in Phase II human trials.  Without it the kid has no chance at all.  If the drug doesn't pan out he dies also.  If the drug works the kid might live.


I have long advocated that the FDA grant compassionate use for anything in Phase II or beyond when they have basically no chance of living without it.


That seems like it would be a good compromise.  The FDA could even stipulate that anyone taking part in such a program forgoes any right to sue the drug company or hospital for anything relating to the experimental treatment.

If someone is going to die anyway, it seems worthwhile to roll the dice.
 
2014-02-16 10:52:54 PM
Loren: Except it does no harm to science. He doesn't meet the test requirements, he shouldn't be counted one way or the other.

If administered the child should be counted, as that is one more data point. I'm not a clinician or statistician, so I don't know shiat about these trials; but if all relevant information can be recorded and everybody involved can be absolved of any negative outcome, then go for it.
 
2014-02-16 10:53:23 PM

Fano: Good thing they are using emotional appeals in order to paint the drug company as villains for not giving out unproven drugs willy nilly. I mean, what's the worst that can happen to affect the approval of a perfectly useful drug than just giving it to anyone and then having them die gruesome deaths?


Worked for Blackfish.
 
2014-02-16 10:54:53 PM

Loren: Except it does no harm to science.  He doesn't meet the test requirements, he shouldn't be counted one way or the other.



When he dies/continues to deteriorate anyhow, his parents can... and  will, because they're the kind of morons that can't work out the logic behind why they can't get their kid into the trial... sue the researchers, wasting a lot of time and money.

So, yes, it will hurt science.

Wanna fix this?  Go convince his state's government and the feds that it's a good idea to provide a legal mechanism for signing away your basic medical protections and right to life outside of the existing strictly-controlled conditions.  A free-form "it's perfectly cool if you murder my child" form that parents can sign off on, as it were, that makes doctors immune to prosecution and civil liability without any kind of preceding requirements.

//Good luck with that, most states won't even allow legal suicide.
 
2014-02-16 10:59:53 PM

umad: Loren: I have long advocated that the FDA grant compassionate use for anything in Phase II or beyond when they have basically no chance of living without it.

Then you should also be advocating for civil immunity for the manufacturers in those cases. Without it, nothing is going to change.


I'd be fine with this.

"This here is a chemical. We have no idea what will happen. Could cure you, could melt your balls off. If you are willing, you can have some at less than cost because of NHS subsidies.
 
2014-02-16 11:03:01 PM

kregh99: ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


That is correct, and that is how clinical trials work.  I know because I am currently in one, and the number of times I could have been removed for any reason are staggering if you take the time to read the consent form you sign when they consider you, and as I go through, I still can be removed for a variety of completely legitimate reasons.  Clinical trials are million-to-one shots at best to get in and the odds are only slightly better to stay in.


Best of luck to you.

Also proud of Fark for shooting down this stupid appeal to emotion so thoroughly.
 
2014-02-16 11:03:42 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


That, and the company is protecting themselves from the lawsuit the parents would file when the drug killed their kid.

Siding with big pharma on this one.
 
2014-02-16 11:06:17 PM

Jim_Callahan: A free-form "it's perfectly cool if you murder my child" form that parents can sign off on, as it were, that makes doctors immune to prosecution and civil liability without any kind of preceding requirements.


You're gonna hve to hit 'em with some kind of gag order as well. No drug company wants to risk a loud family shiatting all over them because some kid too their experimental drug and exploded.
 
2014-02-16 11:06:56 PM
Clinicians have a purpose.  So so their products.  At the end of the day, what has the kid got to lose?  Seriously.  Lots of lovely data to be mined if he lives.  And, you know, the peripheral "oh how nice" of a kid staying above dirt.
 
2014-02-16 11:07:55 PM

TuteTibiImperes: Loren:

No.  This is a drug in Phase II human trials.  Without it the kid has no chance at all.  If the drug doesn't pan out he dies also.  If the drug works the kid might live.


I have long advocated that the FDA grant compassionate use for anything in Phase II or beyond when they have basically no chance of living without it.

That seems like it would be a good compromise.  The FDA could even stipulate that anyone taking part in such a program forgoes any right to sue the drug company or hospital for anything relating to the experimental treatment.

If someone is going to die anyway, it seems worthwhile to roll the dice.


...and in exactly 2 weeks after this scheme is started someone sues anyway, and gets a judgement.
 
2014-02-16 11:10:49 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


BUT FEELINGS!!!

A bunch of people on Facebook +1d the kid!  Shouldn't that count for something?
 
2014-02-16 11:11:05 PM

ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.


I read that in Cave Johnson's voice.
 
2014-02-16 11:14:33 PM

Fark It: ikanreed: Administering experimental drugs outside of rigorous trials is unethical.  It might save your son, and it might reduce his last few days to shear agony, or something similar.  That's the point.

BUT FEELINGS!!!

A bunch of people on Facebook +1d the kid!  Shouldn't that count for something?


And I'd like to add that it would suck for the people who have been actually selected as candidates for the trial (the people who deserve the drug) and are getting sugar pills for someone to get the real deal because they complained loud enough.
 
Displayed 50 of 134 comments

First | « | 1 | 2 | 3 | » | Last | Show all

View Voting Results: Smartest and Funniest


This thread is closed to new comments.

Continue Farking
Submit a Link »






Report