8 ms·

While I understand that giving people experimental drugs is extraordinarily dangerous, it still saddens me that, in all likelihood, these guys only got the rule

by gwillen 12y ago

While I understand that giving people experimental drugs is extraordinarily dangerous, it still saddens me that, in all likelihood, these guys only got the rules bent because they were doctors. Anybody else would likely not have had the option.

Fuxy 12y ago
"As doctors, trying an untested drug on patients is a very difficult choice since our first priority is to do no harm, and we would not be sure that the experimental treatment would do more harm than good." Really? I don't think this is a difficult choice at all there's nothing worse than dying so at that point any experimental drug should be fair game with the patients consent. We already know what will happen if they don't take anything so why not try something else instead of letting people die all the time.
- deleted 12y ago
  [deleted]
- shiven 12y ago
  there's nothing worse than dying Donald Rumsfeld, the CIA and victims of "extraordinary rendition" would like to disagree. (hint: waterboarding) so at that point any experimental drug should be fair game with the patients consent. The ethics of it are way more complicated than that. How would you like to take the risk of not only dying a horrible death, but having the pain magnified 10x due to a drug side effect? Or a drug that causes permanent brain damage to the point of vegetative state but saves your life?
  - Fuxy 12y ago
    Humans will always find inventive ways to torture other humans however if i had a choice between waterboarding and Ebola i will have to go with the one with higher chances of survival. As far as drug side effects are concerned it's up to the patient really. Risk brain damage or amplification of pain for the potential for a higher chance? There's only so far you can go experimenting on animals before you just have to give people a chance to choose for themselves. Once the drug has been proven to give you better odds without known severe side effects or it the likelihood of the side effects is very low then it's up to each individual person to decide even if these test were only done on animals before. What is worse being given a choice or being prevented from choosing by a lot of read tape.
- cpwright 12y ago
  They don't know that the patients will die. There is a survival rate of somewhere between 10-50%. The patient will likely die if you do nothing, but it isn't a certainty. That said, I don't think there was anything wrong with giving it a go when they have pretty poor odds.
  - HelloMcFly 12y ago
    From what I was reading about this Ebola outbreak, most of the "survivor" percentages were from those who hadn't yet had the illness long enough to die or be certain they will live. There is a lot of uncertainty about the death rate for Ebola in a given outbreak, this one included. While trying to find a description of this, it looks like FiveThirtyEight put something together on the exact topic: http://fivethirtyeight.com/datalab/we-still-dont-know-how-deadly-the-ebola-outbreak-in-west-africa-will-be/ http://fivethirtyeight.com/datalab/we-still-dont-know-how-de... As for using experimental drugs, there are certainly times when the probability of death may seem dramatically increased for one patient relative to the overall survival numbers. "Certainty" for a population is one thing, "certainty" for some patients can be more (but not entirely) clear.
    - rayiner 12y ago
      There was a quote in an article yesterday, where a doctor at Emory basically said: our treatment strategy with Ebola is just to keep the patient alive long enough for the body's immune system to fight the disease. People don't die of the bleeding per se, but the fluid loss and organs going into shock: http://www.latimes.com/science/sciencenow/la-sci-sn-ebola-virus-20140801-story.html http://www.latimes.com/science/sciencenow/la-sci-sn-ebola-vi.... A doctor in that article estimates that the mortality rate with proper medical care is more like 45-55%. So the proper base rate to consider for an experimental treatment with respect to U.S. persons is not the 90% mortality rate in Africa, but the ~50% mortality rate that might be expected of someone in a hospital here in the U.S.
robin_reala 12y ago
Not ‘would likely not have’; the rest of the deaths in the current outbreak haven’t had this chance.
gfodor 12y ago
instead of being saddened by it you should be happy that these are two lives spared for people who can go on to now help others. and it also will potentially accelerate the development of these drugs. what would be truly sad is if we had the ability to save these people and we didn't do so because it would be bending the rules.
- seanflyon 12y ago
  I think it is appropriate to be saddened because these people would not have been allowed to receive treatment if we did not bend the rules for them and at the same time be happy that these two lives were saved.
tjohns 12y ago
To be fair, Nancy Writebol (one of the two who received that drug) isn't a doctor, though she did volunteer at ELWA Hospital. From what I read, her official job title is "Personnel Coordinator", and she is also a certified nursing assistant. She was also helping disinfect staff leaving the isolation ward. Regardless, if we've only got a few doses of an experimental drug available, I think it's totally fair to give it to the folks who are putting their lives on the line to help treat hundreds of others.
- yread 12y ago
  Here http://www.huffingtonpost.com/2014/08/04/nancy-writebol-ebola_n_5648910.html http://www.huffingtonpost.com/2014/08/04/nancy-writebol-ebol... they call her a missionary
  - jnbiche 12y ago
    So? I realize you're not saying anything negative, but let's remember that she was there in the middle of a terrifying epidemic, helping people. I'm not particularly religious, nor am I a Christian, but I don't feel the outrage that so many others do online about missionaries. To the contrary, I have a deep appreciation for anyone helping people in the midst of medical emergencies, regardless of motivation. Now, do I think that American Missionaries, or any ex-pats, should have priority medical care over others, particularly local medical staff? That's the real issue here. What were the criteria for finding patients?
    - yread 12y ago
      Did you see that much outrage in my comment that you had to reply? > Now, do I think that American Missionaries, or any ex-pats, should have priority medical care over others, particularly local medical staff? That's the real issue here. What were the criteria for finding patients? I don't think any officials considered that. They have just airlifted her because she was helping the sick - i.e. she was more of a nurse than missionary.
      - 12y ago
mentalhealth 12y ago
I do partially agree with you, but it's at least worth noting that people in the medical field are much more likely to have the capacity to genuinely consent to the receipt of experimental drugs (in the sense of actually understanding what they're agreeing to).
jacquesm 12y ago
Doctors risk their lives. If and when they get ill during their work we should spare absolutely no expense to get them well again. Also, if I were a doctor in a situation like that it would be good to know that my back is covered in case I do get ill. It would substantially increase the likelihood of me continuing to risk my life. If I saw other doctors around me being abandoned if they got ill then I might have second thoughts about staying in that line of work.
- deleted 12y ago
  [deleted]
- seanflyon 12y ago
  The bending of the rules gwillen was referring to is not paying for expensive medication, it is allowing these doctors to take experimental drugs. The sad thing is not that these deserving doctors got the help they needed, but that if they were less deserving we would have forcibly prevented them from getting the help they needed, out of a misguided attempt to protect them.
- gwillen 12y ago
  To be clear: I think it's _great_ that we went out of our way to get those doctors back to the US for treatment. If it would be resource-prohibitive to help everyone, I think it's important to help the helpers first, and we owe that to them. But the issue with experimental drugs is not one of resource constraint. We _could_ give them to anybody who asks. It's not that we gave them to the doctors because they are more deserving, but rather because they are insiders to the system and thus can get strings pulled and rules bent.
floody-berry 12y ago
White + American appear to have been far more important than doctor: http://en.wikinews.org/wiki/Leading_Sierra_Leone_doctor_dies_in_Ebola_epidemic http://en.wikinews.org/wiki/Leading_Sierra_Leone_doctor_dies... http://www.newvision.co.ug/news/657141-ugandan-doctor-dies-of-ebola-in-liberia.html http://www.newvision.co.ug/news/657141-ugandan-doctor-dies-o... http://www.sjcatholichospital.com/2014/08/03/br-patrick-nshamdze-our-hospital-director-dies-at-52/ http://www.sjcatholichospital.com/2014/08/03/br-patrick-nsha...
- hueving 12y ago
  Being American is a possible reason because the Americans tend to get more attention in America. White has nothing to do with it though. There is no evidence of that. Get over your hangups.
  - victorhooi 12y ago
    It was an American pharmaceutical company. And the CDC was the one coordinating this trial. I think it's perfectly reasonable that they were able to get clearance to use two American citizens as their test subjects. Imagine the outrage if we'd picked two foreigners, and the trial had gone south (it still could, touch wood). Besides, these were two American citizens who flew to Africa to help Ebola victims, risking their lives. I certainly don't begrudge them.
  - floody-berry 12y ago
    You might have a point if they were treated in America http://www.cbsnews.com/news/how-soon-can-a-vaccine-or-treatment-stop-ebola-in-its-tracks/ http://www.cbsnews.com/news/how-soon-can-a-vaccine-or-treatm... > Last week, several vials of an experimental drug serum called ZMAPP were transported to Liberia from the NIH in an effort to treat two American aid workers with Ebola. Two of the doctors I linked died in Liberia.
    - krschultz 12y ago
      And then the patients were put in a US plane with US staff and flown to a US hospital next to the US CDC, all paid for by a US charity. There they will be monitored by the US trained doctors, meanwhile feeding information back to the US based company that invented the drug, which is manufactured on US soil. This has nothing to do with them being doctors and everything to do with them being American. Sorry, it's not an insane conspiracy, it's just the way the system works. You keep pointing it out - but we all already get it. There is a different standard when it comes to American vs non-Americans in the situation. The important question is whether or not the drug works. Because if it does, you can bet your ass people are going to try and get as much as of it to the affected countries as possible. If we made a stockpile of the wonder drug and withheld it from Africa, then you would have a point. Until then, cross your fingers like the rest of us that this will work.
jimmcslim 12y ago
There's a certain irony in that The Onion is currently running a story, 'Experts: Ebola vaccine at least 50 white people away'. http://www.theonion.com/articles/experts-ebola-vaccine-at-least-50-white-people-awa,36580/ http://www.theonion.com/articles/experts-ebola-vaccine-at-le...
rjsw 12y ago
We will want them to be able to write up any data they have on the spread of the disease, bit difficult to do that if they are dead.
aestra 12y ago
Imagine if there had been a negative outcome. Like they went into a vegetative state. News at 6: "Poor Black People In Third World Country Maimed by Being Used As Guinea Pigs for American Pharmaceutical Company."
- colinbartlett 12y ago
  This is the plot to a movie I have seen, though I can't recall its name.
  - XorNot 12y ago
    The Constant Gardner. Also a book.
  - xsmasher 12y ago
    http://en.wikipedia.org/wiki/Medical_experimentation_in_Africa#Meningitis_testing_in_Nigeria_-_1990s http://en.wikipedia.org/wiki/Medical_experimentation_in_Afri... Influenced "The Constant Gardener," based on a John le Carré novel.
  - DanBC 12y ago
    The Constant Gardener, after a John Le Carre book. http://m.imdb.com/title/tt0387131/ http://m.imdb.com/title/tt0387131/
- jleyank 12y ago
  We discussed this over lunch. Ebola's one of the (fortunately) few diseases that have a quick, negative outcome. So, faced with "death in hours or days", risk management is altered. So, taking something that might not work (die quick), kill you (die quick) or give you more than hours or days to live seems like a good gamble. Or at least not a bad one.
walshemj 12y ago
Dr's would probably better able to understand the risks and give informed consent - there is also a long history of Doctors experimenting on themselves.
codexjourneys 12y ago
I agree it does not seem fair, although if they now use this drug more broadly for everyone who's infected, it would be worth the unfairness. I also think Sheik Umar Khan, who was Sierra Leone's head doctor on this, deserved a chance -- surprised he did not try a blood transfusion from a survivor.
Pxtl 12y ago
If they're doctors that contracted Ebola because they were deliberately putting themselves in harm's way treating other Ebola sufferers and plan to continue doing so after they recover? Yeah, they get the front of the line.

by gwillen 12y ago

Fuxy 12y ago

"As doctors, trying an untested drug on patients is a very difficult choice since our first priority is to do no harm, and we would not be sure that the experimental treatment would do more harm than good." Really? I don't think this is a difficult choice at all there's nothing worse than dying so at that point any experimental drug should be fair game with the patients consent. We already know what will happen if they don't take anything so why not try something else instead of letting people die all the time.

deleted 12y ago
[deleted]
shiven 12y ago
there's nothing worse than dying Donald Rumsfeld, the CIA and victims of "extraordinary rendition" would like to disagree. (hint: waterboarding) so at that point any experimental drug should be fair game with the patients consent. The ethics of it are way more complicated than that. How would you like to take the risk of not only dying a horrible death, but having the pain magnified 10x due to a drug side effect? Or a drug that causes permanent brain damage to the point of vegetative state but saves your life?
- Fuxy 12y ago
  Humans will always find inventive ways to torture other humans however if i had a choice between waterboarding and Ebola i will have to go with the one with higher chances of survival. As far as drug side effects are concerned it's up to the patient really. Risk brain damage or amplification of pain for the potential for a higher chance? There's only so far you can go experimenting on animals before you just have to give people a chance to choose for themselves. Once the drug has been proven to give you better odds without known severe side effects or it the likelihood of the side effects is very low then it's up to each individual person to decide even if these test were only done on animals before. What is worse being given a choice or being prevented from choosing by a lot of read tape.
cpwright 12y ago
They don't know that the patients will die. There is a survival rate of somewhere between 10-50%. The patient will likely die if you do nothing, but it isn't a certainty. That said, I don't think there was anything wrong with giving it a go when they have pretty poor odds.
- HelloMcFly 12y ago
  From what I was reading about this Ebola outbreak, most of the "survivor" percentages were from those who hadn't yet had the illness long enough to die or be certain they will live. There is a lot of uncertainty about the death rate for Ebola in a given outbreak, this one included. While trying to find a description of this, it looks like FiveThirtyEight put something together on the exact topic: http://fivethirtyeight.com/datalab/we-still-dont-know-how-deadly-the-ebola-outbreak-in-west-africa-will-be/ http://fivethirtyeight.com/datalab/we-still-dont-know-how-de... As for using experimental drugs, there are certainly times when the probability of death may seem dramatically increased for one patient relative to the overall survival numbers. "Certainty" for a population is one thing, "certainty" for some patients can be more (but not entirely) clear.
  - rayiner 12y ago
    There was a quote in an article yesterday, where a doctor at Emory basically said: our treatment strategy with Ebola is just to keep the patient alive long enough for the body's immune system to fight the disease. People don't die of the bleeding per se, but the fluid loss and organs going into shock: http://www.latimes.com/science/sciencenow/la-sci-sn-ebola-virus-20140801-story.html http://www.latimes.com/science/sciencenow/la-sci-sn-ebola-vi.... A doctor in that article estimates that the mortality rate with proper medical care is more like 45-55%. So the proper base rate to consider for an experimental treatment with respect to U.S. persons is not the 90% mortality rate in Africa, but the ~50% mortality rate that might be expected of someone in a hospital here in the U.S.

robin_reala 12y ago

Not ‘would likely not have’; the rest of the deaths in the current outbreak haven’t had this chance.

gfodor 12y ago

instead of being saddened by it you should be happy that these are two lives spared for people who can go on to now help others. and it also will potentially accelerate the development of these drugs. what would be truly sad is if we had the ability to save these people and we didn't do so because it would be bending the rules.

seanflyon 12y ago
I think it is appropriate to be saddened because these people would not have been allowed to receive treatment if we did not bend the rules for them and at the same time be happy that these two lives were saved.

tjohns 12y ago

To be fair, Nancy Writebol (one of the two who received that drug) isn't a doctor, though she did volunteer at ELWA Hospital. From what I read, her official job title is "Personnel Coordinator", and she is also a certified nursing assistant. She was also helping disinfect staff leaving the isolation ward. Regardless, if we've only got a few doses of an experimental drug available, I think it's totally fair to give it to the folks who are putting their lives on the line to help treat hundreds of others.

yread 12y ago
Here http://www.huffingtonpost.com/2014/08/04/nancy-writebol-ebola_n_5648910.html http://www.huffingtonpost.com/2014/08/04/nancy-writebol-ebol... they call her a missionary
- jnbiche 12y ago
  So? I realize you're not saying anything negative, but let's remember that she was there in the middle of a terrifying epidemic, helping people. I'm not particularly religious, nor am I a Christian, but I don't feel the outrage that so many others do online about missionaries. To the contrary, I have a deep appreciation for anyone helping people in the midst of medical emergencies, regardless of motivation. Now, do I think that American Missionaries, or any ex-pats, should have priority medical care over others, particularly local medical staff? That's the real issue here. What were the criteria for finding patients?
  - yread 12y ago
    Did you see that much outrage in my comment that you had to reply? > Now, do I think that American Missionaries, or any ex-pats, should have priority medical care over others, particularly local medical staff? That's the real issue here. What were the criteria for finding patients? I don't think any officials considered that. They have just airlifted her because she was helping the sick - i.e. she was more of a nurse than missionary.
    - 12y ago

mentalhealth 12y ago

I do partially agree with you, but it's at least worth noting that people in the medical field are much more likely to have the capacity to genuinely consent to the receipt of experimental drugs (in the sense of actually understanding what they're agreeing to).

jacquesm 12y ago

Doctors risk their lives. If and when they get ill during their work we should spare absolutely no expense to get them well again. Also, if I were a doctor in a situation like that it would be good to know that my back is covered in case I do get ill. It would substantially increase the likelihood of me continuing to risk my life. If I saw other doctors around me being abandoned if they got ill then I might have second thoughts about staying in that line of work.

deleted 12y ago
[deleted]
seanflyon 12y ago
The bending of the rules gwillen was referring to is not paying for expensive medication, it is allowing these doctors to take experimental drugs. The sad thing is not that these deserving doctors got the help they needed, but that if they were less deserving we would have forcibly prevented them from getting the help they needed, out of a misguided attempt to protect them.
gwillen 12y ago
To be clear: I think it's _great_ that we went out of our way to get those doctors back to the US for treatment. If it would be resource-prohibitive to help everyone, I think it's important to help the helpers first, and we owe that to them. But the issue with experimental drugs is not one of resource constraint. We _could_ give them to anybody who asks. It's not that we gave them to the doctors because they are more deserving, but rather because they are insiders to the system and thus can get strings pulled and rules bent.

floody-berry 12y ago

White + American appear to have been far more important than doctor: http://en.wikinews.org/wiki/Leading_Sierra_Leone_doctor_dies_in_Ebola_epidemic http://en.wikinews.org/wiki/Leading_Sierra_Leone_doctor_dies... http://www.newvision.co.ug/news/657141-ugandan-doctor-dies-of-ebola-in-liberia.html http://www.newvision.co.ug/news/657141-ugandan-doctor-dies-o... http://www.sjcatholichospital.com/2014/08/03/br-patrick-nshamdze-our-hospital-director-dies-at-52/ http://www.sjcatholichospital.com/2014/08/03/br-patrick-nsha...

hueving 12y ago
Being American is a possible reason because the Americans tend to get more attention in America. White has nothing to do with it though. There is no evidence of that. Get over your hangups.
- victorhooi 12y ago
  It was an American pharmaceutical company. And the CDC was the one coordinating this trial. I think it's perfectly reasonable that they were able to get clearance to use two American citizens as their test subjects. Imagine the outrage if we'd picked two foreigners, and the trial had gone south (it still could, touch wood). Besides, these were two American citizens who flew to Africa to help Ebola victims, risking their lives. I certainly don't begrudge them.
- floody-berry 12y ago
  You might have a point if they were treated in America http://www.cbsnews.com/news/how-soon-can-a-vaccine-or-treatment-stop-ebola-in-its-tracks/ http://www.cbsnews.com/news/how-soon-can-a-vaccine-or-treatm... > Last week, several vials of an experimental drug serum called ZMAPP were transported to Liberia from the NIH in an effort to treat two American aid workers with Ebola. Two of the doctors I linked died in Liberia.
  - krschultz 12y ago
    And then the patients were put in a US plane with US staff and flown to a US hospital next to the US CDC, all paid for by a US charity. There they will be monitored by the US trained doctors, meanwhile feeding information back to the US based company that invented the drug, which is manufactured on US soil. This has nothing to do with them being doctors and everything to do with them being American. Sorry, it's not an insane conspiracy, it's just the way the system works. You keep pointing it out - but we all already get it. There is a different standard when it comes to American vs non-Americans in the situation. The important question is whether or not the drug works. Because if it does, you can bet your ass people are going to try and get as much as of it to the affected countries as possible. If we made a stockpile of the wonder drug and withheld it from Africa, then you would have a point. Until then, cross your fingers like the rest of us that this will work.

jimmcslim 12y ago

There's a certain irony in that The Onion is currently running a story, 'Experts: Ebola vaccine at least 50 white people away'. http://www.theonion.com/articles/experts-ebola-vaccine-at-least-50-white-people-awa,36580/ http://www.theonion.com/articles/experts-ebola-vaccine-at-le...

rjsw 12y ago

We will want them to be able to write up any data they have on the spread of the disease, bit difficult to do that if they are dead.

aestra 12y ago

Imagine if there had been a negative outcome. Like they went into a vegetative state. News at 6: "Poor Black People In Third World Country Maimed by Being Used As Guinea Pigs for American Pharmaceutical Company."

colinbartlett 12y ago
This is the plot to a movie I have seen, though I can't recall its name.
- XorNot 12y ago
  The Constant Gardner. Also a book.
- xsmasher 12y ago
  http://en.wikipedia.org/wiki/Medical_experimentation_in_Africa#Meningitis_testing_in_Nigeria_-_1990s http://en.wikipedia.org/wiki/Medical_experimentation_in_Afri... Influenced "The Constant Gardener," based on a John le Carré novel.
- DanBC 12y ago
  The Constant Gardener, after a John Le Carre book. http://m.imdb.com/title/tt0387131/ http://m.imdb.com/title/tt0387131/
jleyank 12y ago
We discussed this over lunch. Ebola's one of the (fortunately) few diseases that have a quick, negative outcome. So, faced with "death in hours or days", risk management is altered. So, taking something that might not work (die quick), kill you (die quick) or give you more than hours or days to live seems like a good gamble. Or at least not a bad one.

walshemj 12y ago

Dr's would probably better able to understand the risks and give informed consent - there is also a long history of Doctors experimenting on themselves.

codexjourneys 12y ago

I agree it does not seem fair, although if they now use this drug more broadly for everyone who's infected, it would be worth the unfairness. I also think Sheik Umar Khan, who was Sierra Leone's head doctor on this, deserved a chance -- surprised he did not try a blood transfusion from a survivor.

Pxtl 12y ago

If they're doctors that contracted Ebola because they were deliberately putting themselves in harm's way treating other Ebola sufferers and plan to continue doing so after they recover? Yeah, they get the front of the line.