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Biotech Science

Subjecting Yourself to Experimental Meds 348

Posted by Hemos
from the test-monkeys-ho! dept.
ghostlibrary writes "Even while NIH is getting new ethics regs, patientINFORM is being evangelized as a way for ordinary citizens to look up experimental treatment online, in essence circumventing their doctor, and the FDA long ago tacitly approved this. /. debated Wikis in hospital. RSI fans track risky or untested procedures from the Typing Injury FAQ and Health-Hack covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google. Any other sites out there for those willing to dictate their own medical course? Does this mean Internet users will become test subjects more than the usual college students and elderly?"
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Subjecting Yourself to Experimental Meds

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  • by guildsolutions (707603) on Monday May 16, 2005 @11:47AM (#12544562)
    Its pretty obvious... If nobody vols for these medications, then the results will never be determined. Once we leave the earth we goto a better place above anyway, or so a lot of people tell me. Its a good thing to test experimental drugs...

    Just not on me.
  • sentence 1: wtf (Score:5, Insightful)

    by Bootle (816136) on Monday May 16, 2005 @11:47AM (#12544565)
    Does that even remotely make any sense? Sure as hell doesn't to me...
    • Re:sentence 1: wtf (Score:2, Insightful)

      by shamowfski (808477)
      Nope. But I didn't think any of it made sense. I wish they made grammar check. It'd be this huge dude the just knocked the crap out of you for posting shit that doesn't make any sense.
    • Indeed. I'm lost in the horrible grammar.
    • Re:sentence 1: wtf (Score:3, Informative)

      by hey! (33014)
      Well, actually it does, it's just that the author tried to load so many ideas into it it's hard to disentangle them. Furthermore, the main point of the article is that there is a web site which allows people to access information on untested, nonconventional therapies, and that this is controversial for obvious reasons. Yet he leads of with a rather minor related point. The minor point he leads with is that NIH is working on regulations that might impact this kind of site. Since this is a minor side poi
  • Ah yes (Score:3, Insightful)

    by metlin (258108) on Monday May 16, 2005 @11:47AM (#12544566) Journal

    This is just ripe for law-suits galore.

    Just wait and watch, until people figure out whom to sue to get the maximum out of. And then we can see this whole thing wither away...

    (Yes, I know. I'm quite cheerful on Mondays...)
    • Re:Ah yes (Score:2, Insightful)

      by stanleypane (729903)
      This is just a shot-in-the-dark, but I wouldn't be surprised if there is some wort of waiver that must be signed prior to beginning treatment/testing. I couldn't imagine these meds being gauranteed in any way, either.

      Hell, I live near Johns Hopkins in Baltimore and I can tell you they are *constantly* putting ads in the paper for experimental programs related to drug abuse and various other experimental treatments. Something tells me an institution as such has looked into the possible legal troubles they
      • Well, yes - usually patients are asked to sign a form where they give their souls away to the devil^W doctor. Or some such thing.

        But still, it really depends on the extent to which the medication may affect and a lot of other factors - for instance, I'm quite certain that I cannot feed a man cyanide with the intent of "helping" him in any way.

        Negligence and a tonne of other factors would need to be considered - and if something goes amiss, well! Lawsuits, lawsuits.
  • Be careful (Score:5, Interesting)

    by thewiz (24994) * on Monday May 16, 2005 @11:48AM (#12544571)
    My life was saved by an experiemntal drug. The doctors couldn't get my heart restarted after my third open-heart surgery via defibrillation or other methods. The anaesthesist was one of the doctors evaluating a new medication that showed promise for restarting hearts and used it on me. As you can tell, it worked.

    I've also been on the bad side of experimental drugs and have suffered thru some major side-effects. It's not a great feeling when the medication you are taking to eliminate pre-ventricular contractions makes you feel like you're living underwater.

    As for people volutarily subjecting themselves to experimental medications and treatment: TALK WITH YOUR DOCTOR FIRST! He knows your particular case better than any other doctor and can help you evaluate if you are a good candidate for the experimental treatment. It's a good thing that it's becoming easier to find out about available experimental treatments, but don't think it's going to be the "magic-bullet" cure until you find out more and talk with your doctor.
    • by Rude Turnip (49495) <valuation@gm[ ].com ['ail' in gap]> on Monday May 16, 2005 @12:07PM (#12544790)
      "As you can tell, it worked."

      That, or you're a zombie.
      • This conversation held not long after:

        Paramedic #1: You have no pulse, your blood pressure's zero-over-zero, you have no pupillary response, no reflexes and your temperature is 70 degrees.
        Thewiz: Well, what does that mean?
        Paramedic #1: Well, it's a puzzle because, technically, you're not alive. Except you're conscious, so we don't know what it means.
        Thewiz: Are you saying we're dead?
        Paramedic #2: Well, let's not jump to conclusions.
        Thewiz: Are you saying we're dead?
        Paramedic #2: No conclusions.
        Paramedic #1
    • Re:Be careful (Score:2, Interesting)

      My mothers life was also saved in such a way, it was nearly 16 years ago and she's still living today. My father and our family lawyer signed tons and tons of papers releasing the hospital/doctors from malpractice and other legalities... But they finally got her heart started and... Thankfully, she's still with us today... 16 years later.

      As I said above, these drugs have to be tested on someone. When the time comes to say.. "Your dead.. but we can try this and see if you will be alive.. well, Lets try
    • by SoTuA (683507)
      As you can tell, it worked.

      Oh really? You expect us to believe that you are alive *just* because you posted on slashdot? Ha!

      I'm afraid we'll need further proof...

    • When I was a teen, I got to try a "brand new drug" too, for acne, called Acutane.

      It was hell.

      In the end I don't know if my acne would have gone away by itself or if it went away thanks to the medicine, but having talked to other people 15 years later who underwent the same treatment, I know that they gave me a much larger dosage (5 to 15 more depending on their case) than what is currently prescribed nowadays.

      If I could go back in time, I would not take that drug again.
  • No. (Score:2, Funny)

    by shamowfski (808477)
    Last time I checked, my computer could not innoculate me.
  • Its your life (Score:4, Insightful)

    by Ars-Fartsica (166957) on Monday May 16, 2005 @11:48AM (#12544578)
    If you understand the risks, side-effects, and possible benefits, anyone who is mentally fit should be able to insert whatever materials they wish into their own body presuming no perceived liabilities to others (which would preclude crack, PCP, etc).
    • Re:Its your life (Score:4, Insightful)

      by Knara (9377) on Monday May 16, 2005 @11:56AM (#12544664)
      How exactly are "crack, PCP, etc" automatically liabilities to others?
      • Its a judgement call, a subjective one to be sure, but on average PCP will cause you to ignore pain in yourself and others. Crack will make you extremely irrational. The impact of these states tends, on average, to be an unacceptable social cost. They also have no medicinal value whatsoever in their present forms (not subjective).
        • Re:Its your life (Score:4, Interesting)

          by stanleypane (729903) on Monday May 16, 2005 @12:08PM (#12544795)
          No medicinal value? Cocaine was once used as a local anesthetic. What do you think helped spur the creation of synthetic drugs such as novacaine or lidocaine?

          Ditto for PCP. It was originally procuded as an anesthetic for humans later used by veterinarians. Now, neither uses them because of their potential for abuse. Ever heard of Ketamine? Another popular anesthetic used by vets. It is in the same family of drugs as PCP.

          • As I stated explictly in my post, these drugs have no medicinal value in their present forms. I accept that there may be some component or reformulation that is of value. I offered this qualification for a reason.
          • Re:Its your life (Score:3, Informative)

            by hey! (33014)
            Well, sure, but you're not really addressing the original poster's point, are you? Crack is not used topically, it is smoked. Furthermore, it provides an intense high that wears of extremely quickly. Therefore crack has no practical medicinal value as an anesthetic.

            Likewise it is true that PCP was pioneered as an anesthetic, but it was never very useful and has been supplanted by ketamine, which as you pointed out is related, but is clinically superior. Therefore PCP has no medicinal value given that
          • "Cocaine was once used as a local anesthetic

            I can vouch for the use of cocaine as a local anesthetic by doctors. My niece was bitten by a dog on the mouth a few years ago and they uesd it to numb her face while they did the initial repairs. Not sure about what was used by the plastic surgeon in the later operations.

            As for PCP it did have a recent resurgence of use experimentally for treatment of stroke patients. Most stroke patients have the majority of their brain destruction caused by the production
      • Re:Its your life (Score:3, Insightful)

        by garcia (6573) *
        It's not "automatic" with anything but a good majority of users of any addictive, mood altering, substance (i.e. alcohol, crack, PCP, etc) become a liability in some way.
      • Re:Its your life (Score:3, Interesting)

        by dustman (34626)
        How exactly are "crack, PCP, etc" automatically liabilities to others?

        In exactly the same way drinking and driving is a liability to others.

        You're not going to run down some schoolkids every time you drive after a sixpack, and you're not going to kill random strangers every time you get juiced on PCP, but you're statistically an unacceptable liability.
        • Re:Its your life (Score:2, Insightful)

          by gowen (141411)

          you're not going to kill random strangers every time you get juiced on PCP, but you're statistically an unacceptable liability.

          What you say applies to drink without the driving. Drunk people are much more likely to engage in violent, anti-social behaviour than sober people. But that's a piss-poor reason for prohibiting booze (or PCP), because it indiscriminately punishes the well behaved and the ill-behaved user equally.

          I bet you $100 that more people are killed by drunks than PCP users, even after y

          • But that's a piss-poor reason for prohibiting booze (or PCP), because it indiscriminately punishes the well behaved and the ill-behaved user equally.

            This is an amusing theoretical stance on the basis of the virtues of liberty, but it is of no practical value. As for your qualification that drunk drivers are more dangerous than PCP users, it is also fallacious, useless, and misleading.

            • But, part of his implied statement was, what's it to you if they're not operating heavy machinery, or on the highway?

              People should be allowed to drink bleach, whip-up a batch of the nastiest crank you've ever seen, and sit in their homes snorting away, if that's their thing. None of this bothers any of us, until they wander out into the street, or on the highway.

              What's the worst that can happen? Dude wins a Darwin award? That makes us all better, if you think about it.
          • There are far more drunks than PCP users.
            (anyone still use PCP out there?)

            Are there PROPORTIONALLY more people killed by drunks than PCP users is the question you need to ask.
          • I bet you $100 that more people are killed by drunks than PCP users, even after you excludie drink-related traffic accidents.

            Normalize that to the number of people who drink (just about everybody, at least in america) vs the number of people who use PCP (very few), and I'll happily take your bet.
      • It's not as clear a line as Ars-Fartsica implied, but the general premise is that mind-altering drugs make you incapable of recognizing your social responsibilities.

        It's more clear with an example. PCP can cause auditory hallucinations, paranoia, and psychosis in certain people and in certain quantities. Let's say Sober Joe is a peaceable guy... never has a bone to pick with anyone, never been in a single fight. Joe takes some PCP, has the aforementioned reactions, and knocks out a cab driver because h

      • How exactly are "crack, PCP, etc" automatically liabilities to others?

        Take either of them for a couple of months. Better yet, take both for a couple of months. When you get out of the institutions, come back here and report any insights on how crack, PCP, etc are liabilities.

        I've met several junkies and crackheads. They all agree that outlawing it doesn't help. They also agree that they wish it did help: they all wish they'd never started. Whether we're talking about heroin, crack, cocain, LSD or

        • by Qzukk (229616)
          angle dust

          I tried snorting that angle dust once. You have to be careful, the good stuff is nothing but right angles. If you get the cheap shit, you end up with nothing but obtuse angles that don't even fit in your nose, or worse, acute angles that scratch and sting like hell.
    • Re:Its your life (Score:4, Insightful)

      by Rei (128717) on Monday May 16, 2005 @12:03PM (#12544737) Homepage
      While in a general sense I completely agree with you (and have even taken that route myself and assisted others with it), I would clarify that your "no perceived liabilties to others" addendum precludes things like antibiotics and antivirals. If you use them wrong you can turn your body into a breeding ground for "superbugs", which can then go on to cause immense harm.
    • If you understand the risks, side-effects, and possible benefits, anyone who is mentally fit should be able to insert whatever materials they wish into their own body presuming no perceived liabilities to others (which would preclude crack, PCP, etc).

      If you go on these experitmental drugs, they have horrible side effects that require more treatment to recover from which in-effect increases or impacts your insurance, as a group, does that not affect me? Much in the same way that you automatically cast off
      • Most people that need experimental drugs are in no shape to be driving a truck.

        Heck, even if one was on such a drug and physically capable, they wouldn't pass the medical requirements. You need a certain level of health to be allowed to drive a truck.

    • Some of us, like me, have no insurance. This doesn't just mean no doctor visits, but no doctor. Period.

      I'm all for people consuming anything and everything they want -- crack, heroin, asperin, ibuprofen, cialis, PCP, sugar, caffeine, water -- whatever you want.

      I'd rather try an experimental drug, rather than pay out the nose for what little sick-care I can afford. Hopefully, it'll be something I like.
    • I agree. When you've gone to four years of post-secondary education, followed by four grueling years of medical school to understand *all* of the risks, side-effects and possible benefits, and then gone on and done clinical work for a minimum of two years and up to twelve years, you should be able to insert whatever materials you wish into your own body presuming no perceived liabilities to others.

      In all honesty, what you're proposing is lunacy. Even if you majored in biology in college, the amount of info
      • Every day laypeople put drugs in their bodies, some of which have been later determined to be harmful, often not by research performed by doctors, but simply by observations over time. Note also I specifically stated "mentally fit", by which it is implied the person has some understanding of what they are doing, and the risks involved. This really isn't that radical, there have been many cases whereby rational individuals simply cannot afford to wait for the FDA.
  • by PornMaster (749461) on Monday May 16, 2005 @11:50AM (#12544598) Homepage
    I'm as cynical as the next guy, but how the fuck can someone challenge the publishing of information as violating the Freedom of Information Act?

    • It took me a while to figure out that you were referring to:

      Meanwhile, the APS/AAI statements cite other federal policies and regulations the NIH proposal seemingly violates, including the Freedom of Information Act and an Office of Management and Budget circular that says the NIH must perform a "cost comparison study."

      from the evangelized [libraryjournal.com] link in the original story.

      To address your question, I think at least one site lost information in paraphrasing. APS states "While this outcome arguably could be

  • Day Job: Lab Rat (Score:5, Interesting)

    by RobertB-DC (622190) * on Monday May 16, 2005 @11:51AM (#12544609) Homepage Journal
    Moderately Off-Topic Anecdote time!

    One of my favorite unknown alt.country singers, Slaid Cleaves, tells the story of his day job: lab rat for experimental medicines at a center in Austin, Texas.
    I take drugs for a living. I'm a human guinea pig. A lab rat. A medical research volunteer. Pharmaco International pays me to stay in their facility for about $100 a day. Some studies only last a couple of days. Some are comprised of several weekend stays. Right now I'm in the middle of a long term study. 22 days. We are in the facility for the entire time, except for a few 20 minute walks around the building for fresh air. No visitors. No outside food. Hospital type meals are provided, along with newspapers, movies, pay phones and a clip board that tells us where to be and when for certain "procedures."
    The rest of the story (including the lab's phone number, if you're interested) can be found at Slaid Cleaves' web site [slaid.com].
    • The rest of the story (including the lab's phone number, if you're interested) can be found at Slaid Cleaves' web site.

      Wait, those weren't alt.country song lyrics? I was coming up with a little tune in my head to go along with it while reading.

  • Why would Internet users subject themselves this type of thing more than others? If we have the ability to find out about the experimental meds online, we'd know better what we were dealing with, and know enough not to subject ourselves unnecessarily.
  • what??? (Score:4, Insightful)

    by demonbug (309515) on Monday May 16, 2005 @11:54AM (#12544645) Journal
    patientINFORM is being evangelized as a way for ordinary citizens to look up experimental treatment online, in essence circumventing their doctor


    How is gathering infromation on experimental treatments "circumventing their doctor"? It seems to me that it is better to be informed about potential or experimental treatments for an ailment you are suffering from - if you are interested, bring it up with your doctor. And no, that doesn't mean you should TELL your doctor you want this or that treatment; the idea is to inform yourself, not attempt to replace the years of training and practice a doctor has. Seems like a non-issue to me.

    • except people aren't that smart. They'll go to their doctors and demand these treatments. That's why there's so many commercials for different prescription meds nowadays. People see these cures for all their ails advertised on TV, and get pissy when the doctor tries to give them reasons why they shouldn't try them. Or they may even go find a different doctor who will write the prescription.

      I agree with you. When I get sick, I'll let the doctor tell me what's best. I might research it some just to have a be
      • I think the real problem is not with dumb people but smart people who fail to recognize that a doctor with a 100 IQ and a decade spent in med school, residency etc. is still better than a person with a 140 IQ and a couple of hours on the Internet.
      • It depends on how obscure your condition is, and how much your doctor is a specialist in the field. Your family practice doctor probably knows far more than you about how to treat bronchitis or an inner ear infection, but if you have a relatively obscure condition, they likely won't know any more about it than they can read off a page that comes up on a computer screen. If it is a condition that you deal with regularly, however, you may well have read dozens of medical journal articles on the subject.

        As
  • Finger joints (Score:4, Interesting)

    by Colin Smith (2679) on Monday May 16, 2005 @11:55AM (#12544662)
    After typing all day every day for, hmm, decades now my finger joints get painful. I've found that glucosamine and chondroitin supplements work wonders. They take a couple of days to kick in but no pain. IIRC they act by improving the cushioning the joint better and allowing it to heal.

    • by Anonymous Coward
      I find that C2H5OH helpsh the mosht.
    • Tried WD40, the military rust remover / joint loosener? No idea how accurate the story is, but a FOAF was alledgedly selling his model boat collection due to fingers aching too much, and the vast amount of WD40 he absorbed while cleaning them up fixed him.
  • In general, I really like this sort of development. It is the way the alternative health scene has worked for years (although, of course, only recently through the internet). There is a lot to be said for anecdotal evidence - but of course it is also dangerous. Many people feel under or mal-served by the medical establishment. Why not do one's best to bypass it?

    Personally, I have a strong science background so I feel slightly confident about investigating remedies on my own. I do fear for people with poor educations though. That's one thing that the web is good for - it helps people self-educate.
  • /. abbreviation (Score:5, Insightful)

    by kevin_conaway (585204) on Monday May 16, 2005 @11:59AM (#12544694) Homepage
    ...and the FDA long ago the tacitly approved this. /. debated...

    Can we please refrain from starting sentences with the /. abbreviation?
  • by lukewarmfusion (726141) on Monday May 16, 2005 @12:00PM (#12544704) Homepage Journal
    Doctors are like help desk technicians - you come to them with a problem, they have tests they can perform, and in the end they try to help you fix whatever's ailing you. But also like a tech, doctors are not always perfect - they have to make educated guesses about the problem and can definitely make mistakes. (The analogy continues, but it's important to realize the difference in necessary education before a person becomes a doctor. The risks of a PC crash are nothing compared to an allergic reaction that results in death.)

    Now just like calling a computer tech, your visit to the doctor may not be that fruitful. It is possible that you will discover something your physician doesn't - after all, it's your body. In many cases, the doctor may not be willing to spend hours of research time finding a possible treatment for you. It's not surprising that you're willing to spend those hours on Google or other resources.

    What I'd suggest is that you do your research and present your findings to your doctor. Work with him or her to approach these findings from an objective (try) standpoint and leave your emotions at the door. If your doctor will not work with you and you believe that one of these treatments may be successful, find another doctor who will be more receptive.

    A few months ago, I went to the doctor with what I feared to be bronchitis or pneumonia. He told me I had the flu and prescribed a couple of things. I was skeptical of his anti-viral Rx, and when I went to get them filled the pharmacist told me that these drugs were only supposed to be prescribed on the first or second day of symptoms (I was in my fourth). I felt like the doctor (not my regular, but someone filling in) just gave me something to get me to leave. I did some research, and sure enough, there was no reason he should have prescribed those pills other than to mollify me.

    Like telling a user "run a defrag."
    • It is possible that you will discover something your physician doesn't - after all, it's your body.

      While I agree with everything you said in your post, you shouldn't forget that the doctor may also find something that you would never be able to diagnose (in your analogy think of a keylogger that AdAware or SpyBot don't detect). Just because you found something online that you think may help you, you should always remember that the doctors are the experts in the field. And as always, you should get a sec
      • Very true. I would never recommend that someone take their healthcare entirely into their own hands (auto-surgical procedures are messy). :)

        Always get a second opinion if you don't feel your doctor is giving you the best care you can get. Of course, there are folks out there that simply refuse to believe what doctors tell them so they end up hurting or deluding themselves.
  • by TripMaster Monkey (862126) * on Monday May 16, 2005 @12:01PM (#12544719)

    I've tried plenty in my time...didn't know you could get paid for doing so...

    ^_^

  • by LarsWestergren (9033) on Monday May 16, 2005 @12:01PM (#12544723) Homepage Journal
    I volunteered as a test subject a couple of years ago, several times. Partly because of the money (though you didn't get that much), but also, I guess, for the thrill of it (I wouldn't do it today).

    Most of the experiments were totally harmless, but I have a couple of good horror stories. One experiment was a medicine for lowering blood pressure. It worked let me tell you, I almost passed out when running up some stairs the second day, and I'm normally fairly fit. It also contained beta-blockers, which turned out to give me horrible nightmares. Serveral nights I dreamt of being paralyzed, drowning while being tied up, buried alive etc. When waking up from the nightmares I was panicking, but I had problems moving. My body felt sluggish, and my heart was punding very hard but slow, though it *felt* like it should be racing.

    A lasting positive effects of the experiments was that I lost my phobia of needles and blood after giving blood samples once every hour for 24 hours.
  • by l2718 (514756) on Monday May 16, 2005 @12:02PM (#12544727)

    On the news in England [bbc.co.uk]: a man afflicted with a degenerative brain condition has won a court ruling last year that will force doctors to give him water and food even if he cannot ask for it possibly a reaction to the then-ongoing Schiavo case in the US. Doctors are protesting that this "undamentally altered the nature of doctor / patient relationships and was not in the best interests of the patient."

    I have not read the ruling, but I think it should be self-evident that if this guy wants to be sustained even when he can't ask for it, this should be done.

    Doctors claim the ruling means they "would have to provide treatment which they knew would be of no benefit or could even be harmful", which is why I am making the post here. Indeed patients should not be able to force any particular doctor to give them treatment that, in his judgement, is medically unnecceary. Of course, they should be free to find a doctor who agrees with their choice of treatment. Of course, this can be bad for them, as the heading story points out, but it is their problem.

    That said, I fail to see how giving someone food and water can be "harmful". It may be "of no benefit" only to the extent that the person's life is of no benefit, which is not for the doctor to judge especially when the patient has spoken on the matter.

  • by G4from128k (686170) on Monday May 16, 2005 @12:03PM (#12544736)
    All medications are experimental for three fundamental reasons:
    1. Clinic research is not statistically adequate: testing a medication on 10,000 people will not catch adverse side effects that kill 1-in-20,000 (e.g., kill 1,500 per year when 30 million peapl take the drug). Aspirin given to millions of children for more than 100 years before discovering Reyes syndrome.
    2. Genetic variations: People aren't genetically uniform. A drug that tests safe and effective on Chinese patients may kill Caucasians (and the Chinese and Caucasians are hardly genetically uniform). For childhood leukimia, there are currently 3 different drugs and they use genetic testing to determine which one to use (the wrong one is lethal).
    3. Environmental factors: The other substances that you ingest affect drug behavior. Two different drugs may be metabolized via that same pathway and thus if you take both, it slows the the processing of the drug (may increase or decrease the drug's effects). Foods also affect the results. For example., grapefruit deactivates certain digestive enzymes that otherwise limit absorption of some drugs (e.g., you get a higher dose of the medicine if you take it with grapefruit juice).
    The point is that there's rarely enough data and too many genetic and environmental variations to judge all the effects. No medicine is ever proven safe. At best, you can create statistical confidence estimates on the likelihood of adverse reactions, but the genetic and environmental factors make these hard to do.
  • Desperation? (Score:3, Interesting)

    by catdevnull (531283) on Monday May 16, 2005 @12:03PM (#12544743)
    I suppose if there's an experimental drug out there that needs testing and it's aimed at my particular affliction/malady, I'm game for it if the docs can't do much for it with exhisting medicine or techniques. [And the side effects aren't worst than the disease--such as 'anal leakage'].

    But, then again, there ain't no cure for the summertime blues.
  • What is a doctor? (Score:5, Interesting)

    by qualico (731143) <worldcouchsurferNO@SPAMgmail.com> on Monday May 16, 2005 @12:08PM (#12544794) Journal
    Next time your in a doctor's office, ask to see their drug indications guide.
    You should be given a thick manual with pages of fine print on all the available drugs and the interactions/warnings of each.

    The scary part is that it will be choked full of advertising.
    For example; notice the thick tabbed glossy insert for "Viagra".

    This may not be as fraudulent as this:
    http://www.whistleblowerfirm.com/pharmaceutical-fr aud/ [whistleblowerfirm.com]

    However, it does beg the question, "What is a doctor?"
    If they are being swayed by advertising and free samples, than they are nothing more than a sales agent.

    That be said, there are no doubt a class of doctors who see beyond this garbage and choose to educate themselves to offer an unbiased and professional service for their clients.

    Good on ya, if you have found the later, otherwise you might as well just subject yourself to experimental meds.
    • If they are being swayed by advertising and free samples, than they are nothing more than a sales agent.

      Exactly. I routinely fought w/my doctor about how many meds she was prescribing for me and why. Yes, diruetics are supposedly the first method that doctors should try when faced with someone who has high blood pressure. Problem is that I was diagnosed at 18 and only treated at 22+ (due to D1 athletics). She had started treating me over a year and a half after I was already on other meds.

      Diruetics c
  • Does this mean Internet users will become test subjects moreso than the usual college students and elderly?"

    So when did we change from prisoners and the military. I know a WWII & Korean War veteran who claims he was subjected to radiation to "test it's effects".

  • by Anonymous Coward on Monday May 16, 2005 @12:13PM (#12544849)
    [ Disclaimer: I come from a family of MDs, so am probably unusually sympathetic to doctors ]

    There is a general problem with medicine in the US, and this story is part of it. The medical system considers us "patients" who are to be taken care of. But the insurance system considers us "customers", who have to manage our own health care, and figure out how it will be paid for.

    Here's my latest example: I have good reason to suspect I have high LP-a, a condition that can be detected with a simple, inexpensive blood test. The results are easy to interpret, but the test is not standard procedure, especially for someone my age (young).

    The local hospital does the test for $30. My insurance won't cover this test, so it is going to be out of pocket for me. BUT, the hospital won't do the test without a doctor's prescription (read: permission). They say this is so that it gets "billed to your insurance" correctly (even when I say that I am paying out of pocket).

    I can go find some doctor (I don't have a regular doctor), pay a few hundred dollars (insurance won't cover this visit), and explain in gory detail why I want this specific test, hope that they don't think I am kook and give me the prescription. Then I pay the $30.

    The kicker is that the hospital still won't give me the results. Instead, they will only send them to the doctor, requiring a second visit, and more money I don't have.

    So how does this make sense:
    - A test is being done on me
    - But doctor must consent (no mention anywhere of my own consent, by the way)
    - The results, in medical file, are kept hidden from me
    - And I am expected to pay for the whole thing
    - Yet can not influence any of the process
    • (oh, and add to your list - Depending on the results, a flag gets added to your Permanent Medical Record aka the Medical Information Bureau [mib.com], making it permanently more difficult to get individual health insurance. Remember to get your free yearly credit-style report to see how near-death they think you are. Insurance decisions are not supposed to be based only on your MIB. right.)

      While it might not apply to your single-test request, Medical Tourism [www.cbc.ca] might help. In your case, for less than the total cost y

  • Everyone taking illegal drugs is subjecting themself to experimental medicine. They're all generating vast amounts of effects data, consumed almost exclusively by hobbyists. Until that data is processed, and the drugs are available under consistent quality control, the experiment continues.

    On the flip side, lots of newer drugs delivered to the US market since Reagan "streamlined" the FDA are still experimental. Because they haven't processed the effects data, or ignored some less flattering results, the dr
  • by rvaniwaa (136502) on Monday May 16, 2005 @12:22PM (#12544941) Homepage
    I have a rare [carcinoid.org] form of cancer for which I am about 30 years younger than the average person with this cancer. I don't expect my doctor to know much about carcinoid because there are so few of us (he has only treated about half a dozen people with carcinoid).
    Therefore, I feel it is my job to research as much as possible, find experts in carcinoid with which to consult and the latest paper to forward on to my current doc. Medicine should be a cooperative venture between doctor and patient, never just one or the other.
    --Ron
  • I did a few Pharmaco studies -- one complete, one where IIRC I was a standby, and turned out not to be needed.

    It wasn't too bad: I've described it before as a mix of summer camp, hospital, insane asylum, and low-security prison. (These last three, I guess could be usefully combined.)

    The biggest problem is that I failed to think as I should have about hydration: you need to drink enough water if you're going to have a fair amount of liquid extracted through holes in your arms; at one point, after various u
  • by nilesh_tms (680889) on Monday May 16, 2005 @12:29PM (#12544995) Homepage Journal
    Misinformation on the internet can be very dangerous. Things like the Typing Injury FAQ are probably more harmful than good. RSI tends to be more of a psychosomatic issue [harvard.edu]. Sites like the Typing Injury FAQ reinforce the false idea that it is physical problem.

    I say this both from experiencing it for myself and years of research into "RSI" (while I had the symptoms of). The only thing that ever made sense and was able to cure me was John E. Sarno's book "Mindbody Prescription." Do a Google search for "sarno tms [google.com]" for more info (though the link above on the Harvard site [harvard.edu] is the best starting point to understand what he is talking about).

    Take random health information on the internet with a grain of salt, especially since it can cause you to exhibit psychosomatic problems if you are prone to it (which more people are than you would think).

    I know this is a controversial idea, but please at least read all of the document I linked to and give it a chance.
    • Note that the link helpfully tells how to handle a typing-related repetitive stress/strain injury. Apparently, it's all in your head, and as soon as you clear out the negative emotions, you're all set. You just need to buy the book to learn how:

      Don't go home and just try to start typing. If it starts to hurt, you might get scared and start doubting yourself. Read Dr. Sarno's books and then decide if this is right for you. You will find more instructions there on how to proceed and get better.

      Many peo

    • One of the signs of quackery is the claim that you can cure dozens of diseases with your 'discovery'. Sarno fits the bill.

      "In the course of his medical experience, Dr. Sarno realized that TMS is not just limited to musculoskeletal manifestations. Following is a list of conditions which Dr. Sarno believes commonly serve the same purpose. They are conditions which, emotionally induced, can work as a distraction and can be cured through education and awareness.

      Low back pain, diagnosed with one or more of th
  • by rewt66 (738525) on Monday May 16, 2005 @12:33PM (#12545039)
    My mother has arthritis in her hands. She had been on stronger and stronger medicine, and finally was placed on an FDA-approved drug trial. The new medicine was really helping her...

    And then one day she got a phone call: "Stop taking that medicine. Don't take the next pill. Go see your doctor immediately." One of the other patients had died from a side effect of the medication.

    But for my mother, it was a real miracle drug. It has put her arthritis in remission for 10-15 years - and that is unheard of in the world of arthritis treatment.

    Fen-phen comes to mind as another example. Playing games with stuff that hasn't been well studied may have great benefits, or serious consequences, or both. If the FDA hasn't done due diligence (or if you don't trust the FDA), then you'd better do your homework like your life depends on it. Don't just look for the reports of how wonderful the results can be - look for how bad the downside can be.

  • by vorpal22 (114901) on Monday May 16, 2005 @01:09PM (#12545476) Homepage Journal
    Drug law and the pharmaceutical industry both baffle me completely, in a theoretical sense and from personal experience.

    There seems to be a whole branch of the pharmaceutical industry that is interested in deriving new medications to substitute for older tried-and-true medications, because the older meds often demonstrate "positive side effects" that we somehow view as undesirable.

    What we're ignoring is that while the newer medications may eliminate the positive side effects (which may be addictive, or encourage abuse of medications, etc), these are not just vanishing; they're often being replaced by negative and potentially dangerous side effects.

    From my own dealings with the medical industry, I present several examples:
    • In 1996, still a teenager, I was cursed with some terrible, painful, and scarring cystic acne. I went to my doctor at the time and requested tetracycline. He instead gave me Accutane as he was hesitant to prescribe antibiotics for this condition. Several months later, for no situational reason, I became suicidal and tried to kill myself. Suicidal tendencies are now a well-known side effect of Accutane.
    • In 1999, I developed a debilitating case of Generalized Anxiety Disorder. My doctor did not want to prescribe me benzodiazepines (very effective anxiolytics), instead preferring to give me paroxetine (Paxil). Result? It induced, within hours, panic attacks in me. Prior to that point, I had never had a panic attack before. It was determined that I was one of approximately 7% of caucasians deficient in the CYP450 family of liver enzymes, explaining why the medication demonstrated effects within hours instead of within days. This resulted in me also developing Panic Anxiety Disorder. My doctor then wanted to give me imipramine, which had a whole host of negative side effects, including instant death in a small percentage of users. I finally went to see another doctor, who was happy to prescribe me the benzodiazepine alprazolam (Xanax), which worked brilliantly and allowed me to live my life and engage in a cognitive behavioural therapy treatment program to learn long-term anxiety management skills. Note that in dealing with long term users of Paxil, I've noticed that many report that Paxil withdrawal is far worse than benzodiazepine withdrawal despite the fact that Paxil is supposed to be "non-addictive".
    • I pulled a muscle in my lower back in late 2000. The doctor I went to see did not want to give me muscle relaxants for it as he thought they were too addictive, so instead, he provided me with celecoxib (Celebrex). I was in so much pain and so unable to do anything from the stiffness that I was unable to protest, and while it worked, during the treatment I discovered that Celebrex was so new a medication that it had only undergone a couple of clinical trials and had rushed to be released. I felt thoroughly like a guinea pig, particularly in light of the fact that several years later, Celebrex has largely been yanked from the market as it can cause possible heart problems.


    The list can go on: Ultram invented for pain in lieu of the opioids (despite the fact that it's still very addictive), Ambien invented for inducing sleep instead of barbiturates and benzodiazepines (because it was, and still is assumed to be safer - ignoring the fact that it can and often does cause dramatic hallucinations at standard prescribed doses).

    Personally, when I have severe pain, I want codeine or morphine. When I need to be sedated, give me some Valium. Don't try to haul this new, safer, poorly researched crap on me. Opiates, for example, have been in use for hundreds or thousands of years, and are well understood. I'd be much more likely to put my faith and comfort in them than some experimental drug that's but a couple years old.
  • by hey! (33014) on Monday May 16, 2005 @01:10PM (#12545489) Homepage Journal
    Y'know, this is an interesting article, but it is classic case of "burying your lead". It starts of almost as if it is about the new NIH regs. I had to read it several times to make positively sure I understood what was going on.

    Here is the original article:


    ghostlibrary writes "Even while NIH is getting new ethics regs, patientINFORM is being evangelized as a way for ordinary citizens to look up experimental treatment online, in essence circumventing their doctor, and the FDA long ago the tacitly approved this. /. debated Wikis in hospital. RSI fans track risky or untested procedures from the Typing Injury FAQ and Health-Hack covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google. Any other sites out there for those willing to dictate their own medical course? Does this mean Internet users will become test subjects moreso than the usual college students and elderly?"


    Let me suggest this as a better rewrite:

    ghostlibrary writes "People who are interested in obtaining information about experimental treatments for health conditions can turn to a new web site called patientINFORM [patientinform.org], which is being evangelized [libraryjournal.com] by a collective of publishers and medical groups. This site is controversial because it in effect allows patients to circumvent their doctors in the search for unconventional and unapproved therapies. While the FDA has tacitly approved [fda.gov] this kind of information service in the past, the NIH is about to issue new regs [nih.gov] covering the conflicts of interest this kind of service raises. This site joins other sites that disseminate information about risky or untested procedures, such as the Typing Injury FAQ [tifaq.com], which covers RSI (repetitive strain injuries) or Health-Hack [health-hack.com], which covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google, and past Slashdot articles have even discussed the advisability of using wikis in hospitals [slashdot.org].

    Are there other sites out there for those willing to dictate their own medical course? Does this mean Internet users are joining the usual college students and elderly as experimental subjects for untested therapies?"


    I think this is a bit clearer. A general word of advice -- try to put what an article is about in the first clause of the first sentence if possible
  • Be involved! (Score:5, Interesting)

    by Pedrito (94783) on Monday May 16, 2005 @01:31PM (#12545739) Homepage
    Whoever described doctors as "techs" was right on. Anyone who isn't actively involved in their own treatment is being absoutely careless. I decided this years ago, but it came crashing home when I got misdiagnosed by 3 doctors who said I had asthma based on very sketchy evidence. I was promptly put on a steroid inhaler for daily treatment and an albuterol inhaler for emergencies.

    Now, the reason I went to 3 other doctors (the 4th being the one who correctly diagnosed my problem), is that the albuterol (a stimulant that opens the airways) was making my attacks WORSE, not better. But the second and third doctor said it was all in my head and to stick with it.

    It turns out I was actually having panic attacks. So the last thing I really needed was to be sending a stimulant directly into my lungs which is just shy of injecting one right into your veins. I actually stopped taking the albuterol shortly after the second idiot doctor and just kept going back saying the same thing until I finally got a doctor who was willing to actually check if I really had asthma.

    Now this is just a single example, but it's also not the first misdiagnosis I've had. I've been prescribed antibiotics for flu. I've been told I had food poisoning when I didn't.

    There are some good doctors out there. There are a number of really, really, bad doctors out there. And most doctors, good or bad, are rarely willing to take the time to really investigate their patients' problems these days. You simply can't count on doctors to do the homework on your condition. Someone should be doing the homework. The doctor can run tests, but what if they're not running the right tests? You need to do at least some homework and be willing to make suggestions to your doctor. And if that bugs your doctor, find a new one.

    I know we can't all get medical degrees and it should be the doctors' job to figure all this crap out, but the fact is with HMOs and the like, doctors aren't doing their jobs. They're working on a factory line and getting through as many patients as they can as quickly as they can.
  • by b0s0z0ku (752509) on Monday May 16, 2005 @03:37PM (#12547251)
    Well, about a year ago, I was bitten in the head by a tick. Developed joint pain, characteristic rashes in several places on my body, headaches, frequent bouts of feeling like shite, wierd urinary issues, etc. In short, all the symptoms of Lyme Disease.

    Went to my usual doc; he tested me for it using the (quite flawed) ELISA test. Came back negative and all other bloodwork was fine. Two months later, I has a bad case of sinusitis, and was given an antibiotic which just happened to be effective against Lyme.

    After experiencing a worsening of symptoms (known as a Herxheimer reaction) on the third day of treatment, I started feeling much better. Joint and back pain was reduced almost to zero, headaches were gone for the first time in 10 months or so.

    Of course, the doctor said: "you can't possibly have Lyme, you tested negative for it." I told him that I read that the test is not 100% accurate and the NJ state health depertment had even advised doctors not to use it as the sole diagnostic criterion. "Well, ... stop reading so much and worrying about your health. The fact that antibiotics helped you is probably just the placebo effect." (stupid fucktard, as if it isn't known that joint pain is often caused by bacterial infections.)

    So far, after 10 days of that antibiotic (Omnicef) and a week more of self-administered amoxicillin, my symptoms are 90% gone, but since 2 and a half weeks of antibiotics isn't enough to treat Lyme, they'll undoubtedly come back.

    Fortunately, I was given the name of a good specialist, whom I'm seeing in two weeks, and there is still a faint mark from one of the rashes, so there is evidence that I was infected. I suppose that if I were desperate, I could always go to Mexico and get antibiotics or order them through a pharmacy site like Master's Marketing, which is reputable but isn't too particular about prescriptions for non-narcotic drugs.

    -b.

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