 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Diabetes / November 2005Big Brother and vested interests?
This article really made me angry. It seems to me like a blatant abuse of human rights. What do you think? http://www.medscape.com/viewarticle/513392 Making Research A Requirement of Treatment Annette > This article really made me angry. It seems to me like a blatant abuse of > human rights. What do you think? > > http://www.medscape.com/viewarticle/513392 > Making Research A Requirement of Treatment Actually, this could be a benefit for us patients. Right now, in the U.S., anyway, doctors can prescribe just about any approved drug, and they often prescribe them "off label". Once the drug is prescribed, there is NO follow up as to how the drug performed. In fact, none of my doctors has ever asked me about how a drug worked for me. The only time the subject comes up is if I tell them I have had a bad reaction or if the drug is completely ineffective, but even then, that information isn't collected. For example, I recently got a copy of my medical records from an appointment where my doctor found that three weeks on Avandia had caused edema bad enough to trap rings on my fingers and had pushed my blood pressure up to 170/95--much higher than usual. However, all that appears in the medical records is the notation that I was stopping the Avandia--with no reason why. None of the many harmful side effects I've suffered from approved drugs have ever been reported, either--including things like facial swelling, permanent tinnitus, or an increase of pulse to 120 bpm that lasted for a week. If patients taking newer drugs were in studies, all this information would have to be logged and reported. We'd learn a lot more about whether these newer, expensive drugs are helpful or harmful, and maybe even who they help and who they harm. I'd certainly be willing to participate in effectiveness studies for any drug prescribed to me! --Jenny http://www.geocities.com/lottadata4u/ Type 2 Diabetes info http://www.geocities.com/jenny_the_bean/ Low Carb info > > This article really made me angry. It seems to me like a blatant abuse of > > human rights. What do you think? [quoted text clipped - 6 lines] > they often prescribe them "off label". Once the drug is prescribed, > there is NO follow up as to how the drug performed. The latter is not true unless you choose NOT to inform your doctor about whether the medication has provided any benefit or not. > In fact, none of my > doctors has ever asked me about how a drug worked for me. If this were true, would suggest you change doctors. > The only time > the subject comes up is if I tell them I have had a bad reaction or if > the drug is completely ineffective, but even then, that information > isn't collected. If your doctor(s) write down what you tell them in your medical records, the information has been collected. > For example, I recently got a copy of my medical records from an > appointment where my doctor found that three weeks on Avandia had caused > edema bad enough to trap rings on my fingers and had pushed my blood > pressure up to 170/95--much higher than usual. However, all that > appears in the medical records is the notation that I was stopping the > Avandia--with no reason why. If this were true, then your doctor is not adequately documenting your conditions in your medical records. > None of the many harmful side effects I've suffered from approved drugs > have ever been reported, either--including things like facial swelling, > permanent tinnitus, or an increase of pulse to 120 bpm that lasted for a > week. Again, if this were true, then your doctor is **consistently** falling short of adequate documentation. > If patients taking newer drugs were in studies, all this information > would have to be logged and reported. That should already be the case even for the older medications. > We'd learn a lot more about > whether these newer, expensive drugs are helpful or harmful, and maybe > even who they help and who they harm. > > I'd certainly be willing to participate in effectiveness studies for any > drug prescribed to me! You would be wise to consider changing doctor(s) if what you have written is true. Would be more than happy to "glow" and chat about this and other things like cardiology, diabetes and nutrition that interest those following this thread here during the next on-line chat (12/08/05): http://tinyurl.com/cpayh For those who are put off by the signature, my advance apologies for how the LORD has reshaped me: http://tinyurl.com/bgfqt In Christ's love always, Andrew http://tinyurl.com/b6xwk This post not CC'd by email On Fri, 25 Nov 2005 08:02:02 -0500, Jenny <lottadatacarbs@hotmail.com> wrote: >I'd certainly be willing to participate in effectiveness studies for any >drug prescribed to me! > >--Jenny G'day G'day Jenny, Our own willingness to participate voluntarily isn't a particularly compelling argument to suggest others should be coerced into participation. Let's take the particular example where a doctor would withdraw their medical treatment and leave a patient to find another doctor if they did not participate. What could possibly be wrong with that? Well, from my own experience of serving on an ethics committee I formed the general impression that doctors participating in trials were often the best and brightest of their profession. (Sometimes they were the ONLY specialist in the field in our area. The next one would be a hundred kilometres away.) There are several reasons for this. Firstly they are the sort of people who are building and maintaining a reputation by publishing. In order to publish, PRIOR ethical approval must be obtained from an appropriate ethics committee for the research that generates the article. Secondly they are the sort of people who don't have something to hide so are happy to have their actions, decisions etc closely scrutinized. The bottom line is that many patients recognise that the person doing the research is the "top" man/woman in the field. To go to someone else is to go to someone less qualified or less skilled or far, far away. Ethics committees are a mixture of lay, legal and medical people. To gain a quorum the committee must have certain minimum of medical and legal people. Some of the best researchers have on occasions served on the ethic committee as medical people and one gets to know where they stand on various issues. I never once came across them supporting attempts to coerce patients into an experiment. The informed consent sheets, where applicable HAD to contain clauses stating that treatment would NOT be withdrawn or downgraded if the patient decided not to participate. Other meaningful phrases asserted that the patient could withdraw at any time and was not obliged to give a reason for their choice. Best wishes,  SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin Having worked in a physician's office where studies were being conducted, I developed some strong opinions on the matter (I was NOT his study nurse). I'll try to be concise-- 1. All patients in the study CHOSE to participate and were paid for their participation. 2. MDs participating in studies often get their best profits from participating in studies, not in their day to day patient care (at least here in the US, esp. with the low cost of reimbusement w/HMOs). 3. I saw evidence of the MD "cheating" in order to keep patients in the study. If too many patients drop out, he is not able to continue his participation, thus he loses income. 4. Because of what I saw occurring, I do not believe studies to be reliable. I really don't believe that the situation described in the quoted article will ever come to pass. But if it does, the patient's only choice is to find another physician no matter how difficult that may be. I wouldn't want to be the patient of an MD who required me to participate in studies. Mary > This post not CC'd by email > On Fri, 25 Nov 2005 08:02:02 -0500, Jenny [quoted text clipped - 51 lines] > > Best wishes, Study or not, I reserve my right to refuse any drug. In the hosptal that is difficult. Studies are to be questioned since money is involved. The factr there is a small chance you may be harmed dictates you know the people you are dealing with and their ethics. I am aware of a study of dangerous rocket chemicals and animal studies. Allegedly one "reseaercher" said he did not understand why they took so many expensice orecautions. Why is the study being done is another thing a person should consider. Is it under the control of an ethic committte? I can never recover from some harm done by one medication. It only cost me a lot. No one else. Guy. > Having worked in a physician's office where studies were being conducted, > I developed some strong opinions on the matter (I was NOT his study [quoted text clipped - 61 lines] >> that the patient could withdraw at any time and was not obliged to >> give a reason for their choice. Best wishes, This post not CC'd by email On Fri, 25 Nov 2005 12:20:52 -0800, Mary <imnotthere@bogus.com> wrote: >Having worked in a physician's office where studies were being >conducted, I developed some strong opinions on the matter (I was NOT his >study nurse). I'll try to be concise-- > >1. All patients in the study CHOSE to participate and were paid for >their participation. G'day G'day Mary, Thank you for replying. Over time I have come to put a lot of trust in nurses in one particular respect. They often have to pick up the bits as it were from medical misadventures so have a surprising amount of knowledge that is frequently hidden from public view. You raise the interesting point of "inducements". Often we had to decide what was fair recompense for participation in a trial. If the fee is excessive poor people especially are likely to be seduced into participation in trials. >2. MDs participating in studies often get their best profits from >participating in studies, not in their day to day patient care (at least >here in the US, esp. with the low cost of reimbusement w/HMOs). Yes. There have been a few classic cases where this aspect has been taken to the extreme. In one case a pharmaceutical company wanted to increase it market share of about 15% for a blood pressure lowering medication. They proposed a trial similar to the one that started this thread. Doctors would prescribe for their patients one of three drugs including the one marketed by the company. Some suspicions were raised when the amounts to be paid to doctors came to light. These suspicions were largely confirmed when it was discovered that the company intended recruiting vastly more patients than were required to statistically assess the relative merits of the three drugs. Put simply it was an exercise in conditioning GPs to write increased numbers of prescriptions for their brand. It didn't get ethical approval. >3. I saw evidence of the MD "cheating" in order to keep patients in the >study. If too many patients drop out, he is not able to continue his >participation, thus he loses income. Sad but true. >4. Because of what I saw occurring, I do not believe studies to be >reliable. And yet we need to be reliable. >I really don't believe that the situation described in the quoted >article will ever come to pass. But if it does, the patient's only >choice is to find another physician no matter how difficult that may be. > I wouldn't want to be the patient of an MD who required me to >participate in studies. Neither would I. >Mary Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin >> This article really made me angry. It seems to me like a blatant abuse of >> human rights. What do you think? [quoted text clipped - 10 lines] >the drug is completely ineffective, but even then, that information >isn't collected. I see your point. However, Jenny, with all due respect I disagree with you profoundly on this issue! For me, the passage that best clarifies my opposition is this one: "Now assume one change in the trial. In the actual study, cardiologists invited patients with atrial fibrillation to enter the AFFIRM trial. Patients who chose to enroll were assigned to one of the treatment strategies randomly. If a patient declined enrollment, then the cardiologist provided one of the two treatment strategies according to the cardiologist's usual practice. But suppose instead that some cardiologists told their patients that they would treat the atrial fibrillation only if the patients enrolled in the study. IF A PATIENT DID NOT WANT TO PARTICIPATE IN AFFIRM, THE CARDIOLOGIST WOULD DECLINE TO ACCEPT THE PATIENT FOR CARE or would end the patient-physician relationship and instruct the patient to obtain care from another cardiologist. Participation in AFFIRM would have been a condition of receiving care from these cardiologists." (above emphasis mine) So, under these proposed rules, the patient would be refused care and need to seek out another cardiologist if the patient was unwilling to participate in a study involving a RANDOM selection of treatment, not their own choice?!?! Often, different treatment methods are very different in efficacy, theory, and in administration. For example, some may require hospitalization for a few days while others can be done on an outpatient basis. There are also often vast differences of opinion regarding medical theory on which treatment options are based. For example, I think we might both agree that the diagnostic criteria for DM are somewhat flawed? Would either of us be comfortable accepting randomly assigned treatment of one of the potential treatments was predicated upon that flawed assumption? >For example, I recently got a copy of my medical records from an >appointment where my doctor found that three weeks on Avandia had caused >edema bad enough to trap rings on my fingers and had pushed my blood >pressure up to 170/95--much higher than usual. However, all that >appears in the medical records is the notation that I was stopping the >Avandia--with no reason why. >None of the many harmful side effects I've suffered from approved drugs >have ever been reported, either--including things like facial swelling, >permanent tinnitus, or an increase of pulse to 120 bpm that lasted for a >week. Here, I agree with you. I see no reason whatsoever why a patient's reactions to a drug cannot be disclosed, PROVIDED that it is done in such a way that it is not personally identifiable data. For example, omit the patient's name. For example, I'd certainly like to see more reporting and investigation on drug side effects in drugs such as Statins. There have been a great many reports of permanent, irreversible side effects, yet I don't see these mentioned in the prescribing info or studies. This would IMHO be very helpful data to gather. >If patients taking newer drugs were in studies, all this information >would have to be logged and reported. We'd learn a lot more about [quoted text clipped - 3 lines] >I'd certainly be willing to participate in effectiveness studies for any >drug prescribed to me! I certainly would not, under these circumstances! Implicit in this proposal is the possibility that the patient has to agree to the study and then be ASSIGNED a treatment, which might even include a placebo. To me, that is unacceptable. I, and not the Doctor (and certainly not some study designer) am the one with the final say-so on accepting what drugs I will take, and what treatments I will have. It is also I who will evaluate and choose between treatment options. I'd also never accept a treatment that might be a placebo if it was for a life-threatening or major disability causing condition. However, I'd have no trouble at all letting my Doc share non personally identifiable data if the goal was medical science (and not marketing!). I currently take one drug "off label", Altace, and ACE inhibitor normally prescribed for high blood pressure. I take it for Kidney protection as I have never had high BP. Under these proposed rules, I could face coercion to participate in a study involving placebos or other treatment options of which I do not approve, because "off label" does not fit the normal approved guidelines. Short version: I believe our rights as patients are already compromised, and I could not support a further erosion of our rights. >>> This article really made me angry. It seems to me like a blatant abuse of >>> human rights. What do you think? [quoted text clipped - 36 lines] >participate in a study involving a RANDOM selection of treatment, not >their own choice?!?! that would be a blessing beyond compare for those seeking another doctor and looking to get insurance to pay. because this cuts through all the red tape and may even get that idiot pulled from the insurance company's approved list. and makes it easier to get approval to go see another one on the list. if you are paying out of pocket, any doctor will see you. SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, is not only unpatriotic and servile, but is morally treasonable to the American public." ...Theodore Roosevelt (o o) --ooO-(_)-Ooo-------------------- "I don't know half of you half as well as I should like; and I like less than half of you half as well as you deserve." Jesus never hated anyone. > >Often, different treatment methods are very different in efficacy, [quoted text clipped - 63 lines] >Short version: I believe our rights as patients are already >compromised, and I could not support a further erosion of our rights. > This article really made me angry. It seems to me like a blatant abuse of > human rights. What do you think? > > http://www.medscape.com/viewarticle/513392 > Making Research A Requirement of Treatment Not only is it likely that patients will balk... ... their physicians will likely balk too. This is an attempt to shift the exorbitant costs of doing research onto already overly-burdened primary care physicians. Would be more than happy to "glow" and chat about this and other things like cardiology, diabetes and nutrition that interest those following this thread here during the next on-line chat (12/08/05): http://tinyurl.com/cpayh For those who are put off by the signature, my advance apologies for how the LORD has reshaped me: http://tinyurl.com/bgfqt In Christ's love always, Andrew http://tinyurl.com/b6xwk Yes, Annette, it is a blatant abuse of medical patients, and many could be harmed. Pages 5 and 6, which proport to deal with the common reasons patients refuse to participate in studies, really just do a lot of fiddly word games that remind me of legalese. The sort of structure of the treatments described Might work in certain circumstances, but would be very easy to be used for more and more risky and uncertain treatment methods. I would not do it. If the doctor was the only specialist in my area, or that my insurance would cover, I would certainly feel abused and threatened by the practice. A common patient fear - that doctors care more about the research than the patient - would certainly be a factor in any reseach of this kind. I would have no objection for a doctor to report my reaction to any precribled drug to some kind of central record source that could collect information that might in time be used for research into what certain drugs do and how well parts of the population do with them, which is what Jenny suggests. But the kind of reseach in the article would give the patient no information about what was going on, no right to stop the treatment immediately if problems arose, and no real choice in their treatment. I think it is a horrible idea, and really classist, as well, because I'll bet most of the people to whom this would be suggested would be people with little money, limited insurance, and quite possibly little experience or ability to do any research on their own about their conditions and treatments. Mad as hell Susan Adair This post not CC'd by email On Fri, 25 Nov 2005 12:55:32 GMT, "Annette" <acianthus@bigpond.com> wrote: >This article really made me angry. It seems to me like a blatant abuse of >human rights. What do you think? [quoted text clipped - 3 lines] > >Annette G'day G'day Annette, It took six pages to advance a hypothesis that is basically flawed. The writer emphasises the patient has freedom of choice ie they can go to another doctor. This freedom has to be illusory for the proposal to be mooted. IMHO the proposed practice is clearly coercive. Let us take the null hypothesis, ie that the proposed action is not coercive. This would mean patients were truly free to change doctors and so opt out of the experiment. If the freedom were indeed true and not illusory as many patients would opt out as a present. There would be exactly the same delays in getting the required numbers for valid research. Put simply, the very act of putting forward the proposal implies the writer believes that freedom of choice has been curtailed in some fashion. Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin >This post not CC'd by email > [quoted text clipped - 26 lines] > >Best wishes, Hi Q and A :-) Completely agreed. On the opening page (I must admit I stopped there, the temperature was rising): "Patients decline invitations to enroll for a number of reasons. Some people are uncomfortable with the idea of being part of a testing process, or with the possibility that which treatment they will receive will be decided randomly.[9] Many of these patients are concerned that the physicians are more interested in the research study than in the patient's care.[10] Patients also cite concerns about the burden of extra tests and appointments and the uncertainty of the consequences for their health from participation.[1" This ignores the possibility that the patient declines because they do not want to risk their own health to further medical science. By definition, if it is a trial then it is an unproven treatment and there is an element of additional risk. The implied threats in the document, and the assumption that the doctor must know better than the patient what is good for both them and the wider patient community is straight out of Orwell's Big Brother, as Annette implied. "Conditioning treatment on a patient's willingness to enroll in a trial is thought to constitute unacceptable coercion. But in fact, linking treatment to participation in research could be a valuable and ethically sound way to increase patient participation, as long as the clinical trial involves a comparison of alternative, established therapies." I don't agree there is a remote chance that a non-research doctor could consider that "could be ... ethically sound". What's in a word? There is a vast difference in the implications of "Conditioning treatment on a patient's willingness to enroll in a trial" and "linking treatment to participation in research". In the latter, the best available approved treatment can be performed as normal, with the patient being advised of a trial and possible benefits and then being asked whether they wish to participate - with no implication that their continuing treatment is jeopardised in any way. In the former, I see a direct or implied threat. The author appears to specialise in medical ethics. That is a scary thought, if he is listened to by those in power - and he may be. I have to admit he's prepared to address the tough ones. Below is a selection of the titles of some of his recent papers: Feeding tubes, slippery slopes, and physician-assisted suicide. D Orentlicher and CM Callahan Universality and its limits: when research ethics can reflect local circumstances. D Orentlicher Placebo-Controlled Trials of New Drugs: Ethical Considerations David Orentlicher Can assisted suicide be regulated? D Orentlicher and L Snyder Beyond cloning: expanding reproductive options for same-sex couples. D Orentlicher Legislation and end-of-life care D Orentlicher and A Caplan The implementation of Oregon's Death with Dignity Act: reassuring, but more data are needed. D Orentlicher Advertising policies of medical journals. D Orentlicher Cheers, Alan, T2, Australia. SignatureEverything in Moderation - Except Laughter. > Completely agreed. On the opening page (I must admit I > stopped there, the temperature was rising): [quoted text clipped - 9 lines] > uncertainty of the consequences for their health from > participation.[1" Well, let me just add that my response to this proposal was made knowing there isn't a snowball's chance of it ever happening. But, that said, in the U.S. right now, patients participate in very poor "research" every time they take a brand new pill. It's research because the real effects of the drugs are often unknown when the drug hits the market, and because their doctors "enroll" them, without consent, in the research to see what the drugs really do, every time they write a prescription. I didn't put a lot of attention into the article, but it seemed to me that it was talking about situations where a new drug was being prescribed where there were already proven existing treatments, so the goal of the study was to see if the new drugs were more or less effective and at what side effect cost. So let me amend my statement. It seems to me that it would be a very good idea to legislate that any time a patient decides to take a new drug (especially one heavily promoted on TV and in magazine advertisements) they would have to be enrolled in a study for which the doctor was not compensated beyond the modest amount needed to pay for clerical staff time. This would have the effect of causing doctors to STOP pushing every brand new drug on their patients, using them instead for those patients for whom older effective treatments no longer work. It would have the effect of putting patients on notice that this exciting new drug might harm them and that the drug company will take no responsibility for that harm should it happen. All in all, an excellent state of affairs. I suspect those of you in countries with more enlightened health care establishments cannot imagine the climate here in the U.S. where doctors in many cases do earn more from pushing new and untested drugs on patients than from the appointment itself, and where a typical doctor's office may be festooned with posters, calendars, coffee cups, pens, pads, and a host of other drug company promotional materials, all promoting the latest, most hyped, and not so coincidentally, most expensive, drug treatment! --Jenny http://www.geocities.com/lottadata4u/ Type 2 Diabetes info http://www.geocities.com/jenny_the_bean/ Low Carb info This post not CC'd by email On Fri, 25 Nov 2005 19:00:05 -0500, Jenny <lottadatacarbs@hotmail.com> wrote: >> Completely agreed. On the opening page (I must admit I >> stopped there, the temperature was rising): [quoted text clipped - 12 lines] >Well, let me just add that my response to this proposal was made knowing >there isn't a snowball's chance of it ever happening. G'day G'day Jenny, I'm not so sure it couldn't happen. US ethics committees appear to permit trials where a new drug is tested against a placebo. Generally speaking these weren't permitted in NZ as it meant a patient who was being treated could without knowing it be left untreated. We have some dark history here ... a trial of minimal treatment of cervical cancer. History like that hardens the resolve of ethics committees for it never to happen again. >But, that said, in the U.S. right now, patients participate in very poor >"research" every time they take a brand new pill. It's research because >the real effects of the drugs are often unknown when the drug hits the >market, and because their doctors "enroll" them, without consent, in the >research to see what the drugs really do, every time they write a >prescription. Very sadly true if the revelations concerning the efficacy and side effects of SSRIs are anything to go by. >I didn't put a lot of attention into the article, but it seemed to me >that it was talking about situations where a new drug was being >prescribed where there were already proven existing treatments, so the >goal of the study was to see if the new drugs were more or less >effective and at what side effect cost. Actually no. The hypothetical they gave was for two established treatments where it was not known which gave the better recovery rates and fewer side affects. The difference probably isn't all that important. >So let me amend my statement. It seems to me that it would be a very >good idea to legislate that any time a patient decides to take a new >drug (especially one heavily promoted on TV and in magazine >advertisements) they would have to be enrolled in a study for which the >doctor was not compensated beyond the modest amount needed to pay for >clerical staff time. OK. A reasonable proposal. The aim would be to collect more follow up data on side effects so that drugs don't continue to be used for years and years when serious side effects that should have been recorded aren't. >This would have the effect of causing doctors to STOP pushing every >brand new drug on their patients, using them instead for those patients >for whom older effective treatments no longer work. It would have the >effect of putting patients on notice that this exciting new drug might >harm them and that the drug company will take no responsibility for that >harm should it happen. In all trials the company must provide insurance cover. FWIIW many patients in New Zealand are better off than they would be if they weren't in a trial. Put simply the recompense they would receive from the New Zealand ACC is much, much less than they would receive from US companies. >All in all, an excellent state of affairs. > [quoted text clipped - 6 lines] >promoting the latest, most hyped, and not so coincidentally, most >expensive, drug treatment! I don't think it is confined to the US. Yes, it could be worse in the US, I simply don't have the experience to make a judgment. >--Jenny > >http://www.geocities.com/lottadata4u/ Type 2 Diabetes info >http://www.geocities.com/jenny_the_bean/ Low Carb info Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin Hi Jenny-- A couple of things--drugs that MDs are prescribing have already gone through testing involved in receiving FDA approval. Patients need to take responsibility for what they consume, but I realize that's idealistic and not always possible. Because new drugs and medical devices are approved, many MDs fear litigation if they don't prescribe the "best" drug in every case (of course, that doesn't mean that the newest drug is always the best for all patients). To make an extreme example, if your child was dying of cancer and the treating doctor didn't use what is currently considered the "best" cutting-edge anti-cancer drug, and your child died, wouldn't you ask why? Also, participation in studies will never be legislated. And the cost of record-keeping for studies is not modest, it's rather high. Study nurses in our area work a 40-hr + week earning probably $60-75,000/yr. Mary >> Completely agreed. On the opening page (I must admit I >> stopped there, the temperature was rising): [quoted text clipped - 55 lines] > http://www.geocities.com/lottadata4u/ Type 2 Diabetes info > http://www.geocities.com/jenny_the_bean/ Low Carb info >Hi Jenny-- >A couple of things--drugs that MDs are prescribing have already gone >through testing involved in receiving FDA approval. Patients need to >take responsibility for what they consume, but I realize that's >idealistic and not always possible. ah well that explains viox and all those other drugs that got tested, approved and then pulled because they were found to harm and even kill people after they passed testing and FDA approval. Don't put the burden on the patient for the safety of meds prescribed by their docs. SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, is not only unpatriotic and servile, but is morally treasonable to the American public." ...Theodore Roosevelt (o o) --ooO-(_)-Ooo-------------------- "I don't know half of you half as well as I should like; and I like less than half of you half as well as you deserve." Jesus never hated anyone. Because new drugs and medical >devices are approved, many MDs fear litigation if they don't prescribe >the "best" drug in every case (of course, that doesn't mean that the [quoted text clipped - 68 lines] >> http://www.geocities.com/lottadata4u/ Type 2 Diabetes info >> http://www.geocities.com/jenny_the_bean/ Low Carb info > ah well that explains viox and all those other drugs that got tested, > approved and then pulled because they were found to harm and even kill > people after they passed testing and FDA approval. > > Don't put the burden on the patient for the safety of meds prescribed > by their docs. I doubt if there is ANY drug which has not had a bad effect on some people.....Rezulin was pulled a few years ago because, of all the millions of people who took it, 69 died of liver complications.....How many of those 69 would have died of liver complications if they had NOT taken Rezulin???......nobody knows!!! I'm sure people who take aspirin have died from allergies, etc. yet I don't see it being pulled from the market...... If peanuts were subject to the same scrutiny as drugs, they would have been made illegal years ago....... Bottom line is that there is probably NO drug which does not have an adverse effect on some small percentage of the population..... >> ah well that explains viox and all those other drugs that got tested, >> approved and then pulled because they were found to harm and even kill [quoted text clipped - 14 lines] > Bottom line is that there is probably NO drug which does not have an >adverse effect on some small percentage of the population..... your reasoning is flawed. get back with me, when you get some facts. SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, is not only unpatriotic and servile, but is morally treasonable to the American public." ...Theodore Roosevelt (o o) --ooO-(_)-Ooo-------------------- "I don't know half of you half as well as I should like; and I like less than half of you half as well as you deserve." Jesus never hated anyone. >>Hi Jenny-- >>A couple of things--drugs that MDs are prescribing have already gone [quoted text clipped - 8 lines] > Don't put the burden on the patient for the safety of meds prescribed > by their docs. Indeed! If Mary had read my message carefully, she would have seen that I specified that the point of these studies would be to save new drugs that have been tested only over a short period for those patients who don't have an effective alternative--her child with cancer, for example. Just this week I saw a specialist who, after speaking with me for five minutes prescribed a beta blocker drug which would have almost certainly caused me serious side effects, perhaps even death. Is prescribing information states that this drug builds up to possibly toxic levels in "slow metabolizers." I have a long history of severe reactions to normal drug doses, which I mentioned to this doctor, and which suggests very strongly I am part of the 7% of the population who are "slow metabolizers" and lack the enzyme needed to remove this drug from the body. I also mentioned my tinnitus problem to the doctor and was assured this drug did not worsen tinnitus. The PI stated that this drug did worsen tinnitus, and I found quite a few online postings from people who had suffered this effect from the drug. Even worse, stopping this drug without warning can also cause death--a fact that was NOT mentioned by this doctor. Had I not been the paranoid bitch that I am, I would have taken my new drug in blissful ignorance of the harm it could have done me. The only bright spot in the story was that the appointment confirmed that my smart family doctor had made a correct diagnosis (in contradiction to what the endo has said) and that, because he knows of my propensity to react badly to drugs, he had been intelligent enough NOT to prescribe the drug the specialist came up with--which was not meant to treat the condition he diagnosed, and which, from everything I read in the PI, was more likely to worsen, not improve, my presenting symptom. I have a grad degree, a good background in science, and a lot of experience decoding medical publications. So I could read the Prescribing Information and figure out that this drug had a high probability of harming me. There is no chance at all that the average person with no understanding of medical terminology would have been able to extract this information from the Prescribing Information. --Jenny http://www.geocities.com/lottadata4u/ Type 2 Diabetes info http://www.geocities.com/jenny_the_bean/ Low Carb info That's exactly what I was saying, Jenny. People need to be their own advocate. Unfortunately, not all are as educated or willing as you. But the MDs can't be held responsible for knowing everything about every patient--it is simply NOT possible given the amount of people they see each day. Keep in mind that even the patients, themselves, can't keep their own meds and diseases straight, so if the MD gets his information from them can you expect him to be all-knowing in each situation? MDs are not superhuman. Record-keeping has its limitations. I can't tell you how many patient interviews I've conducted prior to surgery, in which the patient ensures me they've informed me of all information, only to have them begin to talk about their testing for HIV, or Hep B, or their past heart bypass surgery, which I wasn't aware of until I had them on the operating room table. Now how can I be held responsible for information that the patient has either forgotton or withheld from me? But your ideas of requiring MDs to be in studies to prescribe a drug just WON'T happen. It's very idealistic, unrealistic. At least not in this world. >>> Hi Jenny-- >>> A couple of things--drugs that MDs are prescribing have already gone [quoted text clipped - 57 lines] > http://www.geocities.com/lottadata4u/ Type 2 Diabetes info > http://www.geocities.com/jenny_the_bean/ Low Carb info This thread shows the limitation of current medical care and some of it excesses. This group is here because we do not have the wonderful medical programs in the ads. We must educate ourselves as much as possible. The doctors should quit overselling themselves and quit passing out pills like candy. They need to quit running a cartel and to allow several levels of medical care. This would give enough tine for better care and should lower the cost significiently. We do not use millionaire assemblers on our factory production lines. There is a problem with those defending their good deal they may become self deluded. Urtimately the closed system will self destruct. then the doc will take orders from some MBA. Like the facdtory production line. If you did not make your quota . you are fired. And "I will make sure you cannot get another job" ' Just to point the other side of the story. Sure glad I never wanted to be a doctor. I would have flunked out. It is so important that you learn and do your part in your medical care. Then you can bitch. Guy ry" <imnotthere@bogus.com> wrote in message news:Haadnd-3L8f9IBXenZ2dnUVZ_vudnZ2d@comcast.com... > That's exactly what I was saying, Jenny. People need to be their own > advocate. Unfortunately, not all are as educated or willing as you. But [quoted text clipped - 77 lines] >> http://www.geocities.com/lottadata4u/ Type 2 Diabetes info >> http://www.geocities.com/jenny_the_bean/ Low Carb info >That's exactly what I was saying, Jenny. People need to be their own >advocate. Unfortunately, not all are as educated or willing as you. [quoted text clipped - 12 lines] >responsible for information that the patient has either forgotton or >withheld from me? that's funny, every time I've gone in for surgery I specifically questioned in writing about HIV, all forms of hep, prior heart surgeries and a whole list of things. That's standard procedure. It's also standard procedure to be asked in writing and verbally about all these things several times in several different ways. you don't do this as a matter of SOP? why the f&^k not? SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, is not only unpatriotic and servile, but is morally treasonable to the American public." ...Theodore Roosevelt (o o) --ooO-(_)-Ooo-------------------- "I don't know half of you half as well as I should like; and I like less than half of you half as well as you deserve." Jesus never hated anyone. > >But your ideas of requiring MDs to be in studies to prescribe a drug [quoted text clipped - 62 lines] >> http://www.geocities.com/lottadata4u/ Type 2 Diabetes info >> http://www.geocities.com/jenny_the_bean/ Low Carb info You are again so rude. I AM NOT the nurse who does the pre-op phone calls and I AM NOT the MD who does the pre-op history & physical. I AM NOT the person who designed the checklist. I AM NOT the patient who, even when questioned, may or may not choose to answer the questions correctly. I AM the OR nurse who has approximately 3 minutes prior to surgery to assess the patient, question the patient according to the information that has already been placed on their chart. I often pick up on things that haven't been found--such as, "why are you on prednisone?" since I see that the patient has no diseases listed that would require it. But I have no control over what information the patient offers. You obviously DO NOT understand protocol and some of your comments show your lack of experience in the area. How do you benefit and how do you promote good will on this ng by using profanity and being so offensive? >>That's exactly what I was saying, Jenny. People need to be their own >>advocate. Unfortunately, not all are as educated or willing as you. [quoted text clipped - 24 lines] > > why the f&^k not? >You are again so rude. I AM NOT the nurse who does the pre-op phone >calls and I AM NOT the MD who does the pre-op history & physical. I AM [quoted text clipped - 14 lines] >How do you benefit and how do you promote good will on this ng by using >profanity and being so offensive? it's obvious that there is a serious flaw in the medical chain where you practice. If these basics are not being correctly researched and reported before they get to you and your 3 minutes worth of interviewing, God help everyone involved. SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, is not only unpatriotic and servile, but is morally treasonable to the American public." ...Theodore Roosevelt (o o) --ooO-(_)-Ooo-------------------- "I don't know half of you half as well as I should like; and I like less than half of you half as well as you deserve." Jesus never hated anyone. > >>>That's exactly what I was saying, Jenny. People need to be their own [quoted text clipped - 25 lines] >> >> why the f&^k not? The most serious flaw is in what the patient fails to disclose to us. We can't hold a gun to their head to tell us everything. What percentage of patients with HIV will honestly disclose that to us even if directly asked (that's why we practice universal precautions)? How many elderly patients even come close to remembering their long list of meds or their medical problems? We can't administer Chinese water torture to get patients to be thorough when answering our questions. Also, there are a certain percentage of patients who can't be reached by phone prior to surgery, so the only information we get is what they happen to remember during their admission. There are definitely flaws in every system, but believe me, where I practice is more careful than most. MDs that don't follow the rules are taken aside by our directors. There again, we can't FORCE every surgeon to be as thorough as the next (I wish all the H&Ps were as thorough as the podiatrists'--they do the BEST job). Some fight the system and I have no respect for them, but yet there's nothing I can do about it. How many times have I see a patient vomit food or drink when waking up from surgery--despite having been told to refrain from eating or drinking after midnight? They think we won't know, but we do eventually, and it's unfortunate for them. I do the best that I can do with what information I've been given, and occasionally I pick up on something important, which I'm thankful for. Most ORs allow 15 minutes between cases, which includes cleaning the room from the previous case, setting up for the next case, interviewing the next patient and getting that patient into the room. If I have a patient with a complicated health history, I take extra time for my interview so that I understand thoroughly, even though I slow things down and might hear about it later. The patient is priority. >>You are again so rude. I AM NOT the nurse who does the pre-op phone >>calls and I AM NOT the MD who does the pre-op history & physical. I AM [quoted text clipped - 19 lines] > reported before they get to you and your 3 minutes worth of > interviewing, God help everyone involved. G'day G'day Mary, Thank you for giving such patient explanations. As someone who has been through general surgery I know how difficult it is to remember every condition relevant to the situation. The pre-admission form here for an anesthetist is four pages long. It contains many facts that I'd already stated on other forms for the surgeon etc. Put simply when one has stated something once it is sometimes assumed that everyone in the network will be updated with this factoid and it ain't necessarily so. Best wishes and once again thank you, Quentin. This post not CC'd by email On Mon, 28 Nov 2005 16:01:06 -0800, Mary <imnotthere@bogus.com> wrote: >The most serious flaw is in what the patient fails to disclose to us. >We can't hold a gun to their head to tell us everything. What [quoted text clipped - 28 lines] >interview so that I understand thoroughly, even though I slow things >down and might hear about it later. The patient is priority. SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin Thank you Quentin. I'm just here to help. > G'day G'day Mary, > [quoted text clipped - 49 lines] >>interview so that I understand thoroughly, even though I slow things >>down and might hear about it later. The patient is priority. > The most serious flaw is in what the patient fails to disclose to us. We > can't hold a gun to their head to tell us everything. What percentage [quoted text clipped - 53 lines] >> reported before they get to you and your 3 minutes worth of >> interviewing, God help everyone involved. heck, I can't always remember all my prior surgeries! :) Dave > heck, I can't always remember all my prior surgeries! :) I had none. I think. :-) SignatureWes Groleau Heroes, Heritage, and History http://freepages.genealogy.rootsweb.com/~wgroleau/ Nevertheless, MDs won't be REQUIRED to be in additional studies after a drug has already passed the FDA. I didn't say I agree--didn't give any opinion on the matter. Did you read the last sentence in the paragraph you quoted? I did express that it is NOT likely that patients will take responsibility. I don't put ALL the burden on them, but don't you, in this ng, recommend that people educate themselves as to what is being prescribed to them? I know I've seen this recommendation by many here, so I'm not alone in this. Like I said, it's best, but NOT likely or possible in many cases. Please don't read into what I say. I know you're always on the offensive at anything I offer. >>Hi Jenny-- >>A couple of things--drugs that MDs are prescribing have already gone [quoted text clipped - 8 lines] > Don't put the burden on the patient for the safety of meds prescribed > by their docs. > I suspect those of you in countries with more enlightened health care > establishments cannot imagine the climate here in the U.S. where doctors [quoted text clipped - 4 lines] > promoting the latest, most hyped, and not so coincidentally, most > expensive, drug treatment! There is a table with various pamphlets published by drug companies crowded all over it, usually spilling onto the floor around it in the dr's waiting area. There is often also a smarmy type with a huge briefcase squeezed in between the runny nosed kids with their parents and the elderly wheelchair jockeys with their health care aides. SignatureNo Husband Has Ever Been Shot While Doing The Dishes > There is often also a smarmy type with a huge briefcase squeezed in > between the runny nosed kids with their parents and the elderly wheelchair > jockeys with their health care aides. I've met several drug company reps around a medical building I've spent far too much time in. None of them seemed smarmy -- just regular people doing a sales job. bj > I've met several drug company reps around a medical building I've spent far > too much time in. None of them seemed smarmy -- just regular people doing a > sales job. Fits my definition SignatureNo Husband Has Ever Been Shot While Doing The Dishes We have some great reps that spend a lot of time at our surgery center. >>There is often also a smarmy type with a huge briefcase squeezed in >>between the runny nosed kids with their parents and the elderly wheelchair [quoted text clipped - 4 lines] > sales job. > bj > medical science. By definition, if it is a trial then it is > an unproven treatment and there is an element of additional > risk. I vehemently oppose the proposal and agree with your overall post. But one minor quibble is that the article (at least the first page) did say they were talking about trials to determine whether one proven treatment was more effective than another. SignatureWes Groleau http://freepages.rootsweb.com/~wgroleau/Wes >> medical science. By definition, if it is a trial then it is >> an unproven treatment and there is an element of additional [quoted text clipped - 4 lines] >first page) did say they were talking about trials to determine >whether one proven treatment was more effective than another. I take your point. It doesn't change my overall detestation of the philosophy or disagreement with this writer's statement. Cheers, Alan, T2, Australia. SignatureEverything in Moderation - Except Laughter. > > medical science. By definition, if it is a trial then it is > > an unproven treatment and there is an element of additional [quoted text clipped - 4 lines] > first page) did say they were talking about trials to determine > whether one proven treatment was more effective than another. I want the final say on which treatment I go with, not a coin flip. SignatureNo Husband Has Ever Been Shot While Doing The Dishes > > medical science. By definition, if it is a trial then it is > > an unproven treatment and there is an element of additional [quoted text clipped - 4 lines] > first page) did say they were talking about trials to determine > whether one proven treatment was more effective than another. Your feelings are understandable. Would be more than happy to "glow" and chat about this and other things like cardiology, diabetes and nutrition that interest those following this thread here during the next on-line chat (12/08/05): http://tinyurl.com/cpayh For those who are put off by the signature, my advance apologies for how the LORD has reshaped me: http://tinyurl.com/bgfqt In Christ's love always, Andrew http://tinyurl.com/b6xwk > >This post not CC'd by email > > [quoted text clipped - 9 lines] > > Completely agreed. On the opening page (I must admit I stopped there, the temperature was rising): Hi there Alan, That was my reaction too. I did not read the rest. > The author appears to specialise in medical ethics. That is a scary thought, if he is listened to by those in power - > and he may be. I have to admit he's prepared to address the tough ones. Below is a selection of the titles of some of > his recent papers: > [quoted text clipped - 26 lines] > Advertising policies of medical journals. > D Orentlicher This extra work that you did on researching some of his previous work sheds a new light on things. As did certain comments by others who posted on the topic. It certainly led to the speculation that the author is actually deliberately and conciously intending to bring an unethical situation to the attention of those who read the article. After all, it *was* published in Medscape! Their main target group is the various medical professions. From what some posters said, in reality it is actually happening, but in a hidden and covert manner. Doctors are already prescribing medications to patients simply because; a) the product has been well promoted, and they believe the hype- they honestly believe that it is in your best interests. After all, it has been approved by the FDA, hasn't it? b) ignorance, due to laziness or overwork/lack of time, in doing their own independant investigation, ie keeping up with the current literature c) venality - one way or another, it is financially rewarding. A nice junket in a 4 star resort described as a "convention" perhaps? is the least of them. The only thing we need, that is really lacking, is a decent reporting system on side effects, adverse reactions, or superior results, from general practise, which might just end up creating a data base for providing the stats needed on established drugs, and make expensive trials unnecessary! Good grief! Pharmaceutical companies might lose money, researchers would lose grants, and who knows what it might do to the practise of medicine? Quite a few mentioned in their posts that the situation described in the article would never happen. I'm not so sure. I have seen, over the years, legislation being proposed and passed, that once would have been unthinkable to most Australians. Times change, and whether things change for the better or the worse in one's opinion, it can and does happen. Finally, I can give at least one example of why I would refuse to take part in such research if offered. A number of well established medications are available for lowering blood pressure. I certainly need such meds to help manage my own medical problems. However, over time, it was discovered that most that I tried up till then had unacceptable and serious side effects. I eventually was prescribed a suitable med by a cardiology specialist who took a WEEK to read up on all the data and study my individual case history, before choosing the one he believed was suitable in my case. No, it was not one that had been considered previously. I now have now taken this one for some time, without any problems or worry. My GP at the time was most unhappy about it, and was not keen to comply with the specialist's recommendation. Since *I* was not happy with *his* care anyway, for quite a number of reasons, I changed doctors, not an easy thing to do in a small, isolated country town. Now what if I had no other local doctor available, and I had to choose to either enter a trial and risk being given a "well-established" drug that caused an adverse reaction, or else lose all medical care completely? Scary stuff. The doctor I left was already a rather arrogant and unpleasant man to start with. I have documentary evidence that money was his main objective in practise anyway. (He bragged about it in a medical journal!) This is not the first "established" medication that is supposed to be safe that did not prove safe for me. Others here have reported similar experiences. At least at the moment I can simply refuse to take it, and still receive medical care. Money and position has always tended to corrupt some people. It's the human condition. But it is also our responsibility to strenuously fight against such things, the best we can, or suffer the consequences. Annette All it takes for evil to prosper is for good men/(women) to say/do nothing. <snipped, but read it all> >It certainly led to the speculation that the author is actually >deliberately and conciously intending to bring an unethical >situation to the attention of those who read the article. I considered that; unfortunately from reading further and considering some of his other articles, I doubt it. I share your fears. There are excellent positive reasons for patients voluntarily entering clinical trials in some areas; I daily read posts by members of my CLL group who can only afford some of the new treatments as part of a trial - and who have exhausted other options. When the costs exceed US$12K per infusion and the course is six infusions over six weeks, not many can do that if their insurance isn't adequate. However, all of the people I know in trials are true volunteers doing it after long investigations and discussions with their doctors, and usually after at least two seperate opinions from different specialists. The thought that coercion could be used (and the threat, open or implied, of refusing treatment is coercion) is abhorrent to me. I thought that could only happen in third-world prison systems. A doctor persuading a patient to enter a trial when the trial is honestly considered likely to benefit the patient directly, and unlikely to degrade treatment in any way, is quite a different matter. First do no harm. Cheers, Alan, T2, Australia. SignatureEverything in Moderation - Except Laughter. : > >This post not CC'd by email : > > [quoted text clipped - 11 lines] : > Completely agreed. On the opening page (I must admit I stopped there, the : temperature was rising): : Hi there Alan, : That was my reaction too. I did not read the rest. : > The author appears to specialise in medical ethics. That is a scary : thought, if he is listened to by those in power - [quoted text clipped - 30 lines] : > Advertising policies of medical journals. : > D Orentlicher : This extra work that you did on researching some of his previous work sheds : a new light on things. As did certain comments by others who posted on the : topic. It certainly led to the speculation that the author is actually : deliberately and conciously intending to bring an unethical situation to the : attention of those who read the article. After all, it *was* published in : Medscape! Their main target group is the various medical professions. : From what some posters said, in reality it is actually happening, but in a : hidden and covert manner. Doctors are already prescribing medications to [quoted text clipped - 7 lines] : in a 4 star resort described as a "convention" perhaps? is the least of : them. : The only thing we need, that is really lacking, is a decent reporting system : on side effects, adverse reactions, or superior results, from general : practise, which might just end up creating a data base for providing the : stats needed on established drugs, and make expensive trials unnecessary! : Good grief! Pharmaceutical companies might lose money, researchers would : lose grants, and who knows what it might do to the practise of medicine? : Quite a few mentioned in their posts that the situation described in the : article would never happen. I'm not so sure. : I have seen, over the years, legislation being proposed and passed, that : once would have been unthinkable to most Australians. Times change, and : whether things change for the better or the worse in one's opinion, it can : and does happen. : Finally, I can give at least one example of why I would refuse to take part : in such research if offered. A number of well established medications are [quoted text clipped - 7 lines] : considered previously. I now have now taken this one for some time, without : any problems or worry. : My GP at the time was most unhappy about it, and was not keen to comply with : the specialist's recommendation. Since *I* was not happy with *his* care : anyway, for quite a number of reasons, I changed doctors, not an easy thing : to do in a small, isolated country town. : Now what if I had no other local doctor available, and I had to choose to : either enter a trial and risk being given a "well-established" drug that : caused an adverse reaction, or else lose all medical care completely? : Scary stuff. The doctor I left was already a rather arrogant and unpleasant : man to start with. I have documentary evidence that money was his main : objective in practise anyway. (He bragged about it in a medical journal!) : This is not the first "established" medication that is supposed to be safe : that did not prove safe for me. Others here have reported similar : experiences. At least at the moment I can simply refuse to take it, and : still receive medical care. : Money and position has always tended to corrupt some people. It's the human : condition. But it is also our responsibility to strenuously fight against : such things, the best we can, or suffer the consequences. : Annette : All it takes for evil to prosper is for good men/(women) to say/do nothing. Annette, This is a most interestign post and I woudl say I mostly agree with it. I do, however, want to state wht is happening to me right now"as we speak" regardign my wet macualar degeration. I am currently beging given a medication on an off=label basis tht was fully explained to me and for which I had to sign a speial permission. This medication, avastin, ws developed for use in tretin metaxticised colon caner by constricting the blood vessels that feed the cancer. Itis givne systemically into the blood stream. It has the side effect of increasing chances of stroke and heary attack. An eye specialist in Florida had the thought to use a tiny dose of this med injected directly into the eye (topically) to constrict the blood vessels that are the cause of the macular degeneration, the swelling of the macula and the bleedign into the macula that results in central focus blindness. He sarted using this as an off-label use with great success last June with no raising of blood pressure or any other side effects (Not a long time I grant). Its use has spread wo a group of super macular specialists who have been using it with their patients, also with great success, gaining improvement in vision, not only olding it from gettign worse. All the doctours using this are curently in sommunication with each other, conparing results and none, so far, has found any complications. As the older treatment of PDT photodynamic treatment combined with a steroild shot had made little improevement in my vision on the sevenond treatment, asn, as my vision ws one mor deteriorating, I agreed to tis new avastin therapy. I go for my seciond monthly shot tomorrow adn am seeing much better than I wsa able to before my first tretment. I have hopes of cumulitive improvement. With something like this, I believe I had the choice of trying it or accepting that i woudl eventually loose the focus vision in my one remaining eye, becomeing legally blind and unable to red. I WA NOT REQUIRED to do this treatment and could have continued to receive the PDT and Steroid if I wanted to. Just another side of the coin. Wendy Actually I was in a several year's study of Vitamin C as a cancer deterrant. Physical, medical records, history, and the occasional follow-up plus delivery of regulal supply of ?. Never did find out whether I had the placebo or the C. I did it early in the 90's, 5 or 6 years after quitting smoking, and early in the diabetes. I do know they concluded that there wasn't a significant result. History of cancer in the family (which I don't have) was, in their opinion, along with smoking, something on which Vitamin C had no measureable effect. In a sense we're all guinea pigs. We live, or die, and join the statistics. 90% of x's will die 10 years earlier than Y's. After 5 years this prescription will save or help x percentage of people suffering with Q. In the same 5 years y percentage will have a fatal or nasty reaction to the same prescription. All statistics available eventuallyl As long as we know what we're getting into, why not find out a little earlier than the statisticians do? Nan, Type 2 since 1990 > This article really made me angry. It seems to me like a blatant abuse of > human rights. What do you think? > > http://www.medscape.com/viewarticle/513392 > Making Research A Requirement of Treatment I would suggest: 1. Patients may be offered free or reduced cost of the medicines being studied in return for participation but may never be coerced in any way (other than the fact that having to choose between free and expensive is a form of coercion!) 2. Doctors should get no additional income from assisting in studies, lest they be tempted to increase their income by some form of subversion of the study or the patient's care. This implies SEVERE penalties for switching meds and pocketing the difference! SignatureWes Groleau ---- The man who reads nothing at all is better educated than the man who reads nothing but newspapers. -- Thomas Jefferson >> This article really made me angry. It seems to me like a blatant abuse of >> human rights. What do you think? [quoted text clipped - 16 lines] > SEVERE penalties for switching meds and pocketing > the difference! Hi All The article I posted a couple of weeks ago may make it irrelevant in the USA when most of your trials go off-shore to the sub-continent. I'll re-post the link here - and also the other article commenting on trials that we discussed about that time. The three articles read as a set are food for thought. The article on poor oversight of trials is particularly pertinent to the ethics discussion. Business Thursday November 17, 10:06 PM http://in.news.yahoo.com/051117/137/6139g.html "Glaxo targets India for cancer drug research <snip> Western drug companies are shifting more clinical trials to emerging markets in a bid to save money, speed up research and educate a new generation of local doctors about their products. Glaxo said in October 2004 that it aimed to move 30 percent of its clinical trials to low-cost countries within two years. ... Drug Industry Human Testing Masks Death, Injury, Compliant FDA http://tinyurl.com/8b2yr or http://www.bloomberg.com/apps/news?pid=specialreport&sid=aspHJ_sFen1s&refer=news " Across the U.S., 3.7 million people have enrolled in drug tests sponsored by the world's largest pharmaceutical companies. The companies have outsourced 75 percent of experimental drug trials to centers like SFBC, a leader in a $14 billion industry. At the same time, the U.S. Food and Drug Administration has farmed out much of the responsibility for overseeing safety in these tests to private companies known as institutional review boards. These boards are also financed by pharmaceutical companies. So, the drug industry is paying the people who do the tests -- and most of the people who regulate those tests. And that combination can be dangerous, and sometimes deadly." Cheers, Alan, T2, Australia. SignatureEverything in Moderation - Except Laughter. As far as I know, patients in the U.S. that participate in studies are volunteers and their meds are free (provided by the drug company). Doctors won't ever put in the time, cost and effort required as well as the time taken away from their regular practice, if not reimbursed. >> This article really made me angry. It seems to me like a blatant abuse of >> human rights. What do you think? [quoted text clipped - 16 lines] > SEVERE penalties for switching meds and pocketing > the difference! >As far as I know, patients in the U.S. that participate in studies are >volunteers and their meds are free (provided by the drug company). many patients actually get paid. SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, is not only unpatriotic and servile, but is morally treasonable to the American public." ...Theodore Roosevelt (o o) --ooO-(_)-Ooo-------------------- "I don't know half of you half as well as I should like; and I like less than half of you half as well as you deserve." Jesus never hated anyone. >Doctors won't ever put in the time, cost and effort required as well as >the time taken away from their regular practice, if not reimbursed. [quoted text clipped - 19 lines] >> SEVERE penalties for switching meds and pocketing >> the difference! I understand that. They volunteer AND get paid. That's why so many, when signing the agreement, pass over important information. Their eye is on the $$$ being offered. >>As far as I know, patients in the U.S. that participate in studies are >>volunteers and their meds are free (provided by the drug company). > > many patients actually get paid. I'm missing a vital point somewhere along the line. When I go to the link below, I get a log in page. Do I have to be a member to read whatever it was? Judanne > http://www.medscape.com/viewarticle/513392 > Making Research A Requirement of Treatment >I'm missing a vital point somewhere along the line. When I go to the link >below, I get a log in page. Do I have to be a member to read whatever it [quoted text clipped - 4 lines] >> http://www.medscape.com/viewarticle/513392 >> Making Research A Requirement of Treatment Yep. You need to register. Medscape is an excellent site, registration is free and you will never get spam as a result of that registration. I thoroughly recommend it. http://www.medscape.com/pages/public/help/index/index-registration Cheers, Alan, T2, Australia. SignatureEverything in Moderation - Except Laughter. >>I'm missing a vital point somewhere along the line. When I go to the link >>below, I get a log in page. Do I have to be a member to read whatever it [quoted text clipped - 11 lines] > >Cheers, Alan, T2, Australia. Some people, such as myself, simply do not give our e-mail addresses online, to any organization for any reason, because policies can change and spam or other garbage can show up. So, the other option here is to use a great web resource called bugmenot http://www.bugmenot.com/ It gives you the login passwords and accounts to get into all kinds of sites that "require" registration. I use it a lot. BTW, the bugmenot passwords for medscape do work: they are what I use. This post not CC'd by email On Sun, 27 Nov 2005 10:08:46 -0700, Chris J. <chris@noadress.com> wrote: >Some people, such as myself, simply do not give our e-mail addresses >online, to any organization for any reason, because policies can [quoted text clipped - 6 lines] > >BTW, the bugmenot passwords for medscape do work: they are what I use. G'day G'day Chris, It sounds like a great solution though it does raise a few simple questions for which there are undoubtedly simple answers. 1. Why do you trust bugmenot more than Medscape? 2. If you register software, doesn't it mean that bugmenot now has the password for software you have registered and could be using it anywhere on this planet that is connected to the internet? Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin >This post not CC'd by email > [quoted text clipped - 15 lines] > >1. Why do you trust bugmenot more than Medscape? I don't, but I don't need to give Bugmenot my e-mail or any other info. The process there is simple: you just type or paste in the url of the site you want access to, and it gives you a user name and password. It asks for no other data, and makes no attempt that I have seen to leave cookies or other things on your system. >2. If you register software, doesn't it mean that bugmenot now has the >password for software you have registered and could be using it >anywhere on this planet that is connected to the internet? Bugmenot is just a web page, not software. As far as I know, it only gives out passwords for other websites, so software issues of any sort would not be relevant, unless I misunderstood your question. But, no, I don't register software any more than I fill in warranty cards when I purchase something. Those are all too often used for marketing purposes. I should mention that I'm a bit of a fanatic on this issue. I absolutely hate it when some marketing slime decides to use my property without my permission (which I define as theft), be it my computer (E-mail) or telephone, for their free marketing. Therefor, I don't give out my info to companies or organizations. >>This post not CC'd by email >> [quoted text clipped - 39 lines] >computer (E-mail) or telephone, for their free marketing. Therefor, I >don't give out my info to companies or organizations. bugmenot.com works safely and does not set off any of my security software, including cooky detection. It generates it's own user names and passwords for the urls you type in. it also clearly states that ANY you give bugmenot "will" be shared by "everyone." no tricks played here. So if you are trying to access your company's network from home, don't try it. if you are trying to access medscape, or any online newspaper or something like that, go for it. SignatureMâck©® Type 1 since 1975 http://www.alt-support-diabetes.org http://www.diabetic-talk.org http://www.insulin-pumpers.org "To announce that there must be no criticism of the President, or that we are to stand by the President right or wrong, |
Enable EMail Alerts
Start New Thread
Reply to this Message