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kieranct
New Member

9 Posts

Posted - 01/25/2007 :  05:39:50   [Permalink]  Show Profile Send kieranct a Private Message  Reply with Quote
quote:
SO, has it been determined which is occurring? Are people susceptible to both Crohn's and M.Avium or does the M.Avium come first and cause Crohn's or do you need both M.Avium and the gene?


That was my point re chicken and egg, UC patients (which also have inflamed intestinal lining) have a much lower %age of MAP infection, which suggests MAP does not just like inflamed intestinal lining but is actually causative.

As for proving cause, i believe that is done through "Kohl's postulates" method, which if you read the Dr Gregor report (quite outdated now) it has been done.

The vaccine being developed (and funded entirely through charitable donations) has already been shown to "inform" T Killer-cells on how to recognise and kill MAP in chickens, trials on humans are ongoing at the moment.

I am not claiming that pharma companies are doing anything unethical per their current ethical guidelines. As an investor I would think pharma companies are doing great business within their legal parameters. I just believe their should be more independence between pharma companies and researchers, i.e. the source of funds for researchers be hidden - no incentive to produce certain results.

Dave W - "likely, its discovery as a Crohn's treatment was "anecdotal"
Neurosis - "all anedotal evidence is about decrease in symptoms or feeling better"
Seems to contradict?

Apologies to Neurosis, i am loving this forum BTW, not getting much work done, finally found some people to have a reasoned intellectual debate with (i have many more topics to come.)

So back to my original point, Dave W, skeptigal, Neurosis - you are all quite happy with the way research is currently done and the incentives it provides for producing cures rather than symptom treatment.
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Dave W.
Info Junkie

USA
26020 Posts

Posted - 01/25/2007 :  08:26:58   [Permalink]  Show Profile  Visit Dave W.'s Homepage Send Dave W. a Private Message  Reply with Quote
quote:
Originally posted by kieranct

So back to my original point, Dave W, skeptigal, Neurosis - you are all quite happy with the way research is currently done and the incentives it provides for producing cures rather than symptom treatment.
Of course not. Don't fall into the trap of assuming that people who defend the current system think it's the best system.

If I had my druthers, the Federal government here would hand me a check for $500 billion every year, for me to split up amongst numerous health-related research projects, including but not limited to basic and advanced drug research. It would have to be me, of course, 'cause I don't trust anyone else to do the job perfectly.

Seriously, though, suggestions for "better" systems are a dime a dozen, and they usually neglect the realities of American views on taxes, budgetary limits, partisan politics, lobbying and all sorts of other problems which would plague socialized pharmaceutical research. In a perfect world, in which all people acted in the best interest of society, there are lots of better systems for delivering not only new drugs, but health care in its entirety. But we don't live in a perfect world.

And don't forget that in countries which have socialized health care, like Britain and Canada, they're still doing private drug research. And the U.S.S.R. and Communist China don't seem to be famous for the number or quality of new and effective drugs their research programs churned out.

- Dave W. (Private Msg, EMail)
Evidently, I rock!
Why not question something for a change?
Visit Dave's Psoriasis Info, too.
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Neurosis
SFN Regular

USA
675 Posts

Posted - 01/25/2007 :  14:48:41   [Permalink]  Show Profile  Send Neurosis an AOL message Send Neurosis a Private Message  Reply with Quote
quote:
Originally posted by kieranct

The vaccine being developed (and funded entirely through charitable donations) has already been shown to "inform" T Killer-cells on how to recognise and kill MAP in chickens, trials on humans are ongoing at the moment.


Well it seems your big pharma conspiracy is a little weak then. Independent (meaning not funded by Pharmacuetical companies) research is being done. You seem to be advocating a law that prevents Pharmacueticals from funding research. Do you also want to stop other forms of research funded by the companies interested in the outcome of the research? Companies should be allowed to fund whatever research they feel is important to their business. Independent research is not illegal, and in the case of drugs, efficacy must be proven and saftey must be proven. Its not like the research can yeild sand as an effective treatment, but you may see it suggested in some 'alternative' diet recommendation. Independent research is not illegal and is being done. If you want full disclosure on the funding of research, I see no problem with that.
quote:

I am not claiming that pharma companies are doing anything unethical per their current ethical guidelines. As an investor I would think pharma companies are doing great business within their legal parameters. I just believe their should be more independence between pharma companies and researchers, i.e. the source of funds for researchers be hidden - no incentive to produce certain results.


What things are they doing that are unethical, period? Without incentive to produce certain results (meaning a usable product) there will be less research funding. Independence from drug company funds will also limit the amount of research being done. If researchers wish to do independent research they are certainly free to do it. It should not be written into law that they must.
quote:

Dave W - "likely, its discovery as a Crohn's treatment was "anecdotal"
Neurosis - "all anedotal evidence is about decrease in symptoms or feeling better"
Seems to contradict?


Wrong. What, did somebody whip up a home vaccine and inject themselves? Did somebody use their cultures to isolate MAP in their colon and gram stain to discover what bacteria were in high population? Dave was only allowing for the possibility that someone anecdotally reported a change in the disease, which led to real doctors running real test. I doubt this was one of those cases unless it was a doctor's anecdotal report after he ran some tests (making it no longer anecdotal in that sense), which carries alot more weight. In any case, what I said was that anecdotal reports are about unexpected change in the disease, a decrease in symptoms. Then tests may be ran to explain that decrease (maybe even to the point of the disease being gone?). Only after the testing can such reporting be trusted for anything. Then, of course, it must be reproduced.
quote:

Apologies to Neurosis, i am loving this forum BTW, not getting much work done, finally found some people to have a reasoned intellectual debate with (i have many more topics to come.)


Why are you apologizing to me?
quote:

So back to my original point, Dave W, skeptigal, Neurosis - you are all quite happy with the way research is currently done and the incentives it provides for producing cures rather than symptom treatment.



Me personally, I am satisfied with evidence being the way in which we verify the efficacy of drugs. I am satisfied with the free market system of everything, including health care. I am not in anyway closed off to improvements in any area, however.

Facts! Pssh, you can prove anything even remotely true with facts.
- Homer Simpson

[God] is an infinite nothing from nowhere with less power over our universe than the secretary of agriculture.
- Prof. Frink

Lisa: Yes, but wouldn't you rather know the truth than to delude yourself for happiness?
Marge: Well... um.... [goes outside to jump on tampoline with Homer.]
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tomk80
SFN Regular

Netherlands
1278 Posts

Posted - 01/25/2007 :  15:10:49   [Permalink]  Show Profile  Visit tomk80's Homepage Send tomk80 a Private Message  Reply with Quote
quote:
Originally posted by Neurosis

quote:
Originally posted by kieranct
I am not claiming that pharma companies are doing anything unethical per their current ethical guidelines. As an investor I would think pharma companies are doing great business within their legal parameters. I just believe their should be more independence between pharma companies and researchers, i.e. the source of funds for researchers be hidden - no incentive to produce certain results.


What things are they doing that are unethical, period? Without incentive to produce certain results (meaning a usable product) there will be less research funding. Independence from drug company funds will also limit the amount of research being done. If researchers wish to do independent research they are certainly free to do it. It should not be written into law that they must.

I think there is one tendency that is being addressed at this point that can be called unethical, which is the suppression of bad results. As far as I know there are instances were the results of non-working medicins were not published. This is bad, because it hinders medical progress overall. However, I know of no pharmaceutical companis that actually would suppress publication of negative side effects (for example). Also, this suppression of bad results of not privy to the pharmaceutical industry alone, but is a form of publication bias. This is seen through the whole of science. It hinders science, because it does not show the whole story regarding a certain topic. However, although there has been discussion that pharmaceutical research (or perhaps better, research funded by companies) has this issue more in comparison to regular research, it is not something that is isolated to it.


I would also like to give the following nugget. I don't think that a completely government-funded medicin research would improve things one bit. There are several reasons for this. One of important reasons is that I think governments are even more short-sighted then industries are. A government will want to produce result during it's 4 years. That will make it, in my mind, even more unlikely that they will fund curative research, as they will have a lot more incentive to show some tangible result to the elecorate then pharmaceutical companies have. Second, underfunding of the more rare diseases will happen just as much with government funding, since those aren't the ones that will be widely known amongst the public. I think a company that has to make profit is more likely to produce robust research programs than a government that is inherently guided by the whim of the day.

Tom

`Contrariwise,' continued Tweedledee, `if it was so, it might be; and if it were so, it would be; but as it isn't, it ain't. That's logic.'
-Through the Looking Glass by Lewis Caroll-
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McQ
Skeptic Friend

USA
258 Posts

Posted - 01/25/2007 :  21:12:49   [Permalink]  Show Profile Send McQ a Private Message  Reply with Quote
quote:
Originally posted by tomk80

I think there is one tendency that is being addressed at this point that can be called unethical, which is the suppression of bad results. As far as I know there are instances were the results of non-working medicins were not published. This is bad, because it hinders medical progress overall.


Could you clarify what you mean by "bad results"? In the U.S., a drug doesn't last very long in post-marketing if it simply lacks efficacy, so I'm not aware of any specific instances where a Pharmaceutical company has been able to get away with a drug that does not meet the criteria for efficacy.

quote:
Originally posted by tomk80
However, I know of no pharmaceutical companis that actually would suppress publication of negative side effects (for example).


http://www.cooperativeresearch.org/timeline.jsp?timeline=us_health_care_tmln&drug_industry_oversight=suppression_of_data

This is the only site that I found (while doing a quick search) with a condensed bit of info. on this. Merck suppressed information on negative side effects of Vioxx. I know from first hand knowledge that many people in the Pharma industry (not the researchers, but the marketing and sales divisions) strive to minimize the adverse effects of drugs or trumpet the adverse effects of competitors. It is a truly dismal and unethical practice which occurs every day. It is also what I have tried, while being in said industry, to fight.

Overall, the industry has good people of conscience and ethics in it, but there is a lot of dirt and there is a tremendous amount of unethical marketing that goes on.

quote:
Originally posted by tomk80
Also, this suppression of bad results of not privy to the pharmaceutical industry alone, but is a form of publication bias. This is seen through the whole of science. It hinders science, because it does not show the whole story regarding a certain topic. However, although there has been discussion that pharmaceutical research (or perhaps better, research funded by companies) has this issue more in comparison to regular research, it is not something that is isolated to it.


I would also like to give the following nugget. I don't think that a completely government-funded medicin research would improve things one bit. There are several reasons for this. One of important reasons is that I think governments are even more short-sighted then industries are. A government will want to produce result during it's 4 years. That will make it, in my mind, even more unlikely that they will fund curative research, as they will have a lot more incentive to show some tangible result to the elecorate then pharmaceutical companies have. Second, underfunding of the more rare diseases will happen just as much with government funding, since those aren't the ones that will be widely known amongst the public. I think a company that has to make profit is more likely to produce robust research programs than a government that is inherently guided by the whim of the day.



I agree that government funded research alone would not improve overall research. While it may seem that I am pointing out only negatives of the pharma industry, I am in favor of the way we do research now, but believe it can be improved by a better separation of researchers from the industry. Make grants available to researchers, but without the direct linking to specific companies looking for specific results in individual clinical trials of a drug. As it is now, most, if not all, U.S. pharmaceutical companies pay research physicians directly for specific clinical trials. I would like to see grants provided from companies to institutions and researchers that have no direct link. It's pie-in-the-sky wishing, but it would help.

Additionally, the peer review process is absolutely necessary and must remain "clean" from bias by companies. I think that the U.S. does a pretty good job with that, but it is something that needs to constantly held under bright lights.

I honestly see the biggest problems with the pharma industry coming directly from marketing, not from the lack of decent research. My opinion, based only on my personal experience within the industry over a number of years, is that the marketing done ranges from simply poor to criminally negligent.

Clean that up, and you not only get more of the right drugs to the right people for the right reasons, but you reduce that part of the cost of the health care system tremendously.

Elvis didn't do no drugs!
--Penn Gillette
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Neurosis
SFN Regular

USA
675 Posts

Posted - 01/25/2007 :  21:46:17   [Permalink]  Show Profile  Send Neurosis an AOL message Send Neurosis a Private Message  Reply with Quote
quote:
Originally posted by McQ


I honestly see the biggest problems with the pharma industry coming directly from marketing, not from the lack of decent research. My opinion, based only on my personal experience within the industry over a number of years, is that the marketing done ranges from simply poor to criminally negligent.



That about sums it up for me also. I know that a drug company will add a useless ingedient to an old an effective product just to get a new patent and sell it for the higher price. Glass cleaning companies, diet pill producers, cereal makers, etc. all do the same thing.

There are bad things about capitol/profit driven marketing and product manufacturing, but they come with the good. There is not currently a good suggestion for managing these practices. We would all like greed and willful ignorance to vanish, but it ain't goin' away.

Facts! Pssh, you can prove anything even remotely true with facts.
- Homer Simpson

[God] is an infinite nothing from nowhere with less power over our universe than the secretary of agriculture.
- Prof. Frink

Lisa: Yes, but wouldn't you rather know the truth than to delude yourself for happiness?
Marge: Well... um.... [goes outside to jump on tampoline with Homer.]
Edited by - Neurosis on 01/26/2007 01:57:51
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tomk80
SFN Regular

Netherlands
1278 Posts

Posted - 01/26/2007 :  01:11:38   [Permalink]  Show Profile  Visit tomk80's Homepage Send tomk80 a Private Message  Reply with Quote
quote:
Originally posted by McQ

quote:
Originally posted by tomk80

I think there is one tendency that is being addressed at this point that can be called unethical, which is the suppression of bad results. As far as I know there are instances were the results of non-working medicins were not published. This is bad, because it hinders medical progress overall.


Could you clarify what you mean by "bad results"? In the U.S., a drug doesn't last very long in post-marketing if it simply lacks efficacy, so I'm not aware of any specific instances where a Pharmaceutical company has been able to get away with a drug that does not meet the criteria for efficacy.

I mean research on drugs that is at some point abandoned, but this abandoning of research is not reported. This causes other researchers to go down the same path again, although it is already known that the path doesn't work to several people. It falls in the category of my view that we should have a 'scientific magazine of failed research'.

Also, although I have heard less about this, is the suppression of studies that say the drug doesn't work, while still publicizing the studies that say it does work in case of ambiguous results. Especially if there is nothing better on the market at that point, this can be advantageous.

quote:
quote:
Originally posted by tomk80
However, I know of no pharmaceutical companis that actually would suppress publication of negative side effects (for example).


http://www.cooperativeresearch.org/timeline.jsp?timeline=us_health_care_tmln&drug_industry_oversight=suppression_of_data

This is the only site that I found (while doing a quick search) with a condensed bit of info. on this. Merck suppressed information on negative side effects of Vioxx. I know from first hand knowledge that many people in the Pharma industry (not the researchers, but the marketing and sales divisions) strive to minimize the adverse effects of drugs or trumpet the adverse effects of competitors. It is a truly dismal and unethical practice which occurs every day. It is also what I have tried, while being in said industry, to fight.

Overall, the industry has good people of conscience and ethics in it, but there is a lot of dirt and there is a tremendous amount of unethical marketing that goes on.

I definitely can agree with that.

quote:
quote:
Originally posted by tomk80
Also, this suppression of bad results of not privy to the pharmaceutical industry alone, but is a form of publication bias. This is seen through the whole of science. It hinders science, because it does not show the whole story regarding a certain topic. However, although there has been discussion that pharmaceutical research (or perhaps better, research funded by companies) has this issue more in comparison to regular research, it is not something that is isolated to it.


I would also like to give the following nugget. I don't think that a completely government-funded medicin research would improve things one bit. There are several reasons for this. One of important reasons is that I think governments are even more short-sighted then industries are. A government will want to produce result during it's 4 years. That will make it, in my mind, even more unlikely that they will fund curative research, as they will have a lot more incentive to show some tangible result to the elecorate then pharmaceutical companies have. Second, underfunding of the more rare diseases will happen just as much with government funding, since those aren't the ones that will be widely known amongst the public. I think a company that has to make profit is more likely to produce robust research programs than a government that is inherently guided by the whim of the day.



I agree that government funded research alone would not improve overall research. While it may seem that I am pointing out only negatives of the pharma industry, I am in favor of the way we do research now, but believe it can be improved by a better separation of researchers from the industry. Make grants available to researchers, but without the direct linking to specific companies looking for specific results in individual clinical trials of a drug. As it is now, most, if not all, U.S. pharmaceutical companies pay research physicians directly for specific clinical trials. I would like to see grants provided from companies to institutions and researchers that have no direct link. It's pie-in-the-sky wishing, but it would help.

Additionally, the peer review process is absolutely necessary and must remain "clean" from bias by companies. I think that the U.S. does a pretty good job with that, but it is something that needs to constantly held under bright lights.

I honestly see the biggest problems with the pharma industry coming directly from marketing, not from the lack of decent research. My opinion, based only on my personal experience within the industry over a number of years, is that the marketing done ranges from simply poor to criminally negligent.

Clean that up, and you not only get more of the right drugs to the right people for the right reasons, but you reduce that part of the cost of the health care system tremendously.


I agree completely.

Tom

`Contrariwise,' continued Tweedledee, `if it was so, it might be; and if it were so, it would be; but as it isn't, it ain't. That's logic.'
-Through the Looking Glass by Lewis Caroll-
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beskeptigal
SFN Die Hard

USA
3834 Posts

Posted - 01/26/2007 :  03:47:53   [Permalink]  Show Profile Send beskeptigal a Private Message  Reply with Quote
We need a tad more regulation and government funding. But we'll probably continue with the imperfect situation due to politics.

Currently, the system generates copy cat drugs which do not offer cheaper/better, rather they allow the drug companies to go after shares in proven markets. That means too many statins and viagra like drugs and not enough research into other areas.

And we need new antibiotics urgently. That needs government funding. While there is a great need, new antibx will be used conservatively to preserve their effectiveness. That means delayed return on capital invested.

As to cures vs treatments, I think you have a bit of a distorted view of market forces, kieranct. Surgeries are certainly intended to cure and they are big business. Cancer drugs are intended to cure and there is a lot of research in cancer treatments. And now we have the biggest selling drug on the market, statins. Those may be designed to be taken for life, but they will hopefully prevent a large amount of health care later on.

What you are missing is there actually are chronic diseases for which we simply have not found cures. I can assure you HIV drug research is aimed at curing the infection. It would be impossible to plan on suppressing the virus but not eliminating it. And you don't seem to understand the role dedicated researchers play. There are a lot of egos out there looking to have the next famous name like Salk, Sabin, or Pasteur.

The market forces which do encourage research for treatment instead of cure are those that recognize a drug for hypertension is taken daily for life while a drug for an infection may be taken for two weeks. That has some impact on research dollars but it is not some 'big pharma' mantra.


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McQ
Skeptic Friend

USA
258 Posts

Posted - 01/26/2007 :  15:12:20   [Permalink]  Show Profile Send McQ a Private Message  Reply with Quote
Tomk80, thanks for clarifying that on bad results. I agree that the negative results that are revealed need to be reported as stridently as the positive results.

beskeptigal, you hit on another major problem, and irritation for me: copycat or "me too" drugs. It is a sad reality that a company will spend enormous R&D and marketing dollars on another low or non-sedating antihistamine, ACE Inhibitor, statin, or Proton Pump inhibitor. But it is because these markets are in the billions of dollars that companies are willing to do it in order to get even 10%-15% of that billion dollar pie.

(edited, once again, for inferior typing skills)


Elvis didn't do no drugs!
--Penn Gillette
Edited by - McQ on 01/27/2007 08:54:07
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beskeptigal
SFN Die Hard

USA
3834 Posts

Posted - 01/26/2007 :  22:52:56   [Permalink]  Show Profile Send beskeptigal a Private Message  Reply with Quote
Definitely one of capitalism's flaws, McQ. And I imagine it occurs in other markets besides pharmaceuticals.

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kieranct
New Member

9 Posts

Posted - 02/23/2007 :  08:35:29   [Permalink]  Show Profile Send kieranct a Private Message  Reply with Quote
Hello again all, sorry for the delay in replying.....
Apart from suppression of bad results, ghost writing of articles for journals, lack of independence of the health profession from big pharma, "me too" products highlight another big problem with the big pharma model as it now stands, most pharma companies spend more on marketing than they do on research even though any substantially new and effective treatment needs little marketing.

Most basic research into new drugs, as mentioned, comes from public bodies and universities, big pharma is only usually involved when it comes to bringing a product to market.

Perhaps the solution is the use of specialist agencies (which already exist) to do clinical testing and other functions of big pharma by research started publicly, then research can truly focus on clinical need and not profits.

I know I have digressed from my original point of trying to find a way to use more anecdotal evidence in research (my opinion on this has changed) but it comes back to my underlying frustration with the system as it stands.
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kieranct
New Member

9 Posts

Posted - 03/16/2007 :  09:02:19   [Permalink]  Show Profile Send kieranct a Private Message  Reply with Quote
bit of a bump but just to see if i can bait anyone into further debate.....

can i add disease mongering and attempting to subvert independent review of the cost effectiveness of drugs to the list of unethical behaviour pharmaceuticals often engage in. (that is to be added to me too drugs, unethical marketing and clinical trial suppression discussed above.)

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fc1001
New Member

1 Post

Posted - 04/21/2007 :  09:20:03   [Permalink]  Show Profile Send fc1001 a Private Message  Reply with Quote
I don't feel like providing a logical argument against "big pharma" here, but I'd like to tell you a little more about the disease, Crohn's disease, that Kieranct is talking about.

Remicade is one of the drugs of choice. It is protected by strong patents. The avg patient pays $5000-10,000 per month. That includes friends of mine. Despite this, Johnson and Johnson is now being investigated by the Federal Government for overcharging for this drug. They are also being charged with encouraging physicians to "pad" infusion costs. They are also suing a competitor's treatment, citing patent infringement.

That said, these drugs kill. A review of trial data showed that Remicade treatment cause mortality in the range of 2 to 2.8%. That is quite bad. The side effects of these drugs are unbelievable. Lupus, lymphomas. My friend Mike was diagnosed with Lymphoma shortly after starting Remicade.

Not only do the drugs kill, but nobody knows what their long term side effects are. Most of all, they don't want to know.

Another drug, naltrexone, is too old to patent. No drug company will pursue it. University esearchers applied for funding through our patient advocacy group, the CCFA, and were denied. Coincidentally the vast majority of funding to the CCFA comes from drug companies. And that is why only 15% of CCFA spending goes towards research, for a disease with no cure. Ironically, this drug shows the same effectiveness as Remicade in their early clinical trials.

I could go on and on...I understand the opposing viewpoints. Unforuntately, medicine and the free market were not meant to be. Corporations cannot unload "externalities" onto their patient population. This represents "market failure". Yes, I am an economics major in college, heh. I hate to sound like someone ranting about "the corporations", but when you have this disease, have spoken with researchers outside of the US and spoken with doctors who admit that "its all about the money", well, this is a very real problem.

I won't even tell you how many Crohn's patients have died in drug trials. Immune suppression is probably the most dangerous, scary treatment out there. Your body falls apart in every way imaginable.
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Dave W.
Info Junkie

USA
26020 Posts

Posted - 04/21/2007 :  16:49:02   [Permalink]  Show Profile  Visit Dave W.'s Homepage Send Dave W. a Private Message  Reply with Quote
How many Crohn's patients die without treatment?

- Dave W. (Private Msg, EMail)
Evidently, I rock!
Why not question something for a change?
Visit Dave's Psoriasis Info, too.
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Dude
SFN Die Hard

USA
6891 Posts

Posted - 04/21/2007 :  22:40:57   [Permalink]  Show Profile Send Dude a Private Message  Reply with Quote
fc1001 said:
quote:
Not only do the drugs kill, but nobody knows what their long term side effects are. Most of all, they don't want to know.



First, it is impossible to know what the long term effects of a drug are until you have been able to use it for a long time.

Second, your claim that no one wants to know what the long term side effects of drugs are is nothing more than an emotional overreaction. I can assure you that every person who takes a drug in order to survive is desperately interested in the long term side effects, no less so the researchers who discover and investigate drugs. The same for the companies who manufacture the drugs, if for no other reason than to prevent a vioxx incident, but more likely because these companies are composed of and run by your fellow humans, not all of whom are driven by nothing but greed. People are always complex, and in my experience most are interested in helping others when they can.


Ignorance is preferable to error; and he is less remote from the truth who believes nothing, than he who believes what is wrong.
-- Thomas Jefferson

"god :: the last refuge of a man with no answers and no argument." - G. Carlin

Hope, n.
The handmaiden of desperation; the opiate of despair; the illegible signpost on the road to perdition. ~~ da filth
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