tag:blogger.com,1999:blog-4826023149139426251.post151973889494352851..comments2024-01-30T08:28:45.764+00:00Comments on AntiCancer: Saatchi Bill and Medical AnecdotesUnknownnoreply@blogger.comBlogger36125tag:blogger.com,1999:blog-4826023149139426251.post-6850979071186486182014-12-18T09:00:52.362+00:002014-12-18T09:00:52.362+00:00Sorry, the URL for the article "When Doctors ...Sorry, the URL for the article "When Doctors Throw their Hands in the Air" mentioned above didn't show up so here it is:<br />Http://is.gd/Saatchi<br />Angelhttp://is.gd/Saatchinoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-1228213258630034232014-12-17T20:26:29.129+00:002014-12-17T20:26:29.129+00:00"I work with three different charities that s..."I work with three different charities that support patients with late stage cancers. The problem crops up in patients from all three organisations - the fact that it doesn't show up in official sources is puzzling and is perhaps symptomatic of the institutional cultures I mentioned."<br /><br />This chasm between the way Drs behave and the way they are reported as behaving is the subject of my article about the Saatchi Bill, URL attached. <br /><br />If you downgrade everything not said by a Dr to the level of "anecdote", evidence of all such embarrassing fears can easily be made to disappear.<br /><br />Then, if you point that out, it's "oh it's just education". <br /><br />So it's a lack of education that makes Drs THINK there are legal dangers for them in prescribing off-label? <br /><br />Such an unhelpful situation as Drs feeling unable to prescribe off-label treatments to people with no other option just because they are clueless about the law is then just glossed over.<br /><br />The lack of visibility of the problem isn't that puzzling when you realise that it IS the problem.<br /><br />Sadly, the "debate" is more like a mis-matched game of pool in which you can pick any ball as long as it's the red one. <br /><br />Another symptom of the same problem.<br /><br />Angelhttp://is.gd/Saatchinoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-48205284800219981892014-12-17T14:02:01.749+00:002014-12-17T14:02:01.749+00:00"I can only presume you don't actually kn..."I can only presume you don't actually know what "data" is, if you think a voluntary Excel sheet of random unstandardised uncontrolled experiments is it."<br /><br />Thank you for that unwarranted insult. I guess hiding as an Anonymous poster has certain advantages...<br /><br />Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-47783675740876758442014-12-17T13:33:59.411+00:002014-12-17T13:33:59.411+00:00Allowing untested treatments to be used on despera...Allowing untested treatments to be used on desperate patients is inviting quacks to take advantage. That's why quacks love this Bill so much. Doctors are already, and DO, use non standard treatments with no fear of litigation. All this Bill does is remove vital patient safety mechanisms. It gives NO data at all. I can only presume you don't actually know what "data" is, if you think a voluntary Excel sheet of random unstandardised uncontrolled experiments is it. To suggest that ANYONE has said it will mean the end of clinical trials is utterly dishonest. It will however, as Dr Wollaston ACTUALLY said, undermine recruitment to trials. That will make the amazing progress we have already made in treating cancer far more difficult in future. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-87545610285468667412014-12-17T12:43:39.622+00:002014-12-17T12:43:39.622+00:00What 'controlled and scientific manner' do...What 'controlled and scientific manner' does the Bill require?<br /><br />The Bill - as it currently stands - will not improve safety or knowledge. There is, as yet, no requirement to record details of any treatment. But even if it is mandated in some new version of the Bill somewhere down the line (and, given the apparent reluctance of the Bill's PR team to take on board previous criticisms, we need to wait to see what any such amendment actually says), recording of individual stories about individual patients will tell us virtually nothing about a treatment and will not drive innovation.Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-40156930541975902712014-12-17T12:37:52.721+00:002014-12-17T12:37:52.721+00:00Pan said:
"Killing the Bill would send out a...Pan said:<br /><br />"Killing the Bill would send out a very negative message to the medical community and would risk further entrenching the status quo."<br /><br />You - or at least the Bill's PR team - have first to show that the status quo can be improved (it can, but not by this Bill, of course) and that this Bill will do that and do less harm than good. This has not (yet) been demonstrated.Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-7842914402098607662014-12-17T12:36:48.923+00:002014-12-17T12:36:48.923+00:00I do not know if it is intentional or not, but it ...I do not know if it is intentional or not, but it is without question that risk is being transfered from the Pharma companies and doctors onto patients. The Bill is explicitly trying to remove the right of patients to ask courts to look at the decisions made by doctors. As such, the risk of the treatment falls firmly on the patient.Andy Lewishttp://ww.quackometer.netnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-39413300596858379762014-12-17T12:34:22.719+00:002014-12-17T12:34:22.719+00:00What's the evidence that legislation is the be...What's the evidence that legislation is the best way to drive institutional change or even that it will be effective in doing so?<br /><br />And what other avenues have been explored before pushing a Bill through Parliament that will drastically change the law, encourage irresponsible experimentation and remove tried and tested patient protections?Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-41049892115921957582014-12-17T12:26:59.905+00:002014-12-17T12:26:59.905+00:00I'm glad that we agree that we want a culture ...I'm glad that we agree that we want a culture where doctors are not afraid to provide such help to patients. By the same token, if the Bill is poorly constructed then the thing to do is help further amend and improve it. Killing the Bill would send out a very negative message to the medical community and would risk further entrenching the status quo.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-56991308300682696452014-12-17T12:24:15.255+00:002014-12-17T12:24:15.255+00:00Because very often legislation can help drive inst...Because very often legislation can help drive institutional change. That is not to say that there aren't other avenues to be explored in helping this process along.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-35864231627048234332014-12-17T12:17:42.225+00:002014-12-17T12:17:42.225+00:00How exactly is this post putting patients at risk?...How exactly is this post putting patients at risk? What is unforgivable is denying patients a chance to try non-standard treatments in a controlled and scientific manner. It's this denial that drives vulnerable patients into the hands of quacks selling miracle cures over the internet. Far from putting patients at risk, the Bill will improve safety by giving us the data to identify what works and what doesn't - ultimately leading to the prospective clinical trials which we need.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-50220708485642022942014-12-17T11:04:15.995+00:002014-12-17T11:04:15.995+00:00Wow, this post is yet another example of the misin...Wow, this post is yet another example of the misinformation being peddled by the Saatchi team and their misinformed supporters.You are putting vulnerable patients at risk. Unforgivable. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-30941163995970682102014-12-16T17:38:17.007+00:002014-12-16T17:38:17.007+00:00Pan said:
"There is a problem of institution...Pan said:<br /><br />"There is a problem of institutional culture at work here as well...The reasons are complex but are not to do with lack of evidence - they are to do with stepping out of the institutional comfort zone and taking a different route."<br /><br />So, to do with culture rather than fear of litigation?<br /><br />"The Bill sends a clear signal that this is legally OK to do and so encourages doctors to take the steps that they can do now but chose not to."<br /><br />It is legally OK to do that now and there are safeguards in place to protect patients. However, if doctors are not aware of the current legal landscape surrounding the provision of unlicensed and/or untested treatments, why do you believe it is necessary to introduce a new law to educate or encourage them rather than, say, providing information and guidance?Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-39712085379429442582014-12-16T17:27:34.494+00:002014-12-16T17:27:34.494+00:00I agree about the database, although I will reserv...I agree about the database, although I will reserve judgment until I see that reporting cases to it is compulsory. As those above have noted, that is not currently the case.<br /><br />But I guess that we'll have to agree to disagree about the culture. The 100 eminent oncologists who wrote to The Times also felt that there was no issue there. But where we agree is that the culture SHOULD be one where doctors are unafraid to provide such help to patients.<br /><br />But the elephant in the room is the Bill's unintended consequences. It is poorly constructed, could lead to more litigation and is not the answer even if we accept that the problem that it identifies is there.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-44054774589387572422014-12-16T17:20:16.565+00:002014-12-16T17:20:16.565+00:00I work with three different charities that support...I work with three different charities that support patients with late stage cancers. The problem crops up in patients from all three organisations - the fact that it doesn't show up in official sources is puzzling and is perhaps symptomatic of the institutional cultures I mentioned.<br /><br />Changing such cultures is hard - perhaps the BMA suggeston would be better, but the fact is that they are only discussing it because of the Bill. Furthermore, a legal change can help push that cultural change along.<br /><br />Finally, I would suggest the central patient database is a hugely important spin-off that promises a major advance in medicine.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-15474568893419843912014-12-16T17:10:23.278+00:002014-12-16T17:10:23.278+00:00Hi Pan
Thanks for replying. The problem is that ...Hi Pan<br /><br />Thanks for replying. The problem is that none of the research bodies (Wellcome, MRC, Cancer Reserch UK), medical protection societies (MDU, MPS) or either the GMC or BMA managed to find evidence of what you are saying. Nor have I read anything from anyone connected with the Bill that proves that this institutional culture issue is inhibiting doctors from providing what they want to provide.<br /><br />Even if there was, the fact is that the law does not actually inhibit them. If a patient had a form of cancer for which the standard procedure provided no hope, and after discussion with her the doctor provided something 'innovative', that's not negligence. The patient, should they sue in such circumstances, has a zero chance of success. Remember, nobody has been able to provide a single example of a doctor being sued for innovating.<br /><br />Given this, the BMA's suggestion that educating doctors to change the culture is better than legislation is sensible, wouldn't you agree?<br /><br />In particular since this Bill has a number of unintended consequences and vague language that would mean (as some of the bodies I listed above argue) more rather than less litigation.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-56308096318202522332014-12-16T17:01:34.432+00:002014-12-16T17:01:34.432+00:00@Anonymous - There is a problem of institutional c...@Anonymous - There is a problem of institutional culture at work here as well. I know from direct personal experience with my own family, and with families that I have since supported that very often doctors do not prescribe the non-standard treatments that they can prescribe. The reasons are complex but are not to do with lack of evidence - they are to do with stepping out of the institutional comfort zone and taking a different route. The Bill sends a clear signal that this is legally OK to do and so encourages doctors to take the steps that they can do now but chose not to.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-27115338395088706442014-12-16T16:46:03.004+00:002014-12-16T16:46:03.004+00:00Dominic,
you said: "You are right to raise ...Dominic, <br /><br />you said: "You are right to raise the issue of trials and to pose the question as to what happens to patients, with rare diseases, for whom the evidence base is thin and for whom standard treatment means only death. In their case, when there are no trials, objectors to the Bill have no clear nor convincing answer."<br /><br />I am an objector to the Bill, and I have an answer: they will use unlicensed drugs because as you will know they can already currently do that.<br /><br />The Bill does not allow doctors access to any drugs that they cannot currently access, funding to buy/use them that is not currently already in existence and it does not allow them to provide ANY procedure that they cannot currently provide.<br /><br />Am I wrong?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-16660482563003396222014-12-16T15:32:35.263+00:002014-12-16T15:32:35.263+00:00'Putting patients off clinical trials' isn...'Putting patients off clinical trials' isn't the same as 'doing away with clinical trials', is it?<br /><br />But I'm really not sure you want to raise the issue of the use of emotive language and scaring people.Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-91721937550553739592014-12-16T14:53:11.718+00:002014-12-16T14:53:11.718+00:00I specifically said: "One such argument is th...I specifically said: "One such argument is that the Bill will undermine medical progress by doing away with clinical trials, and that instead we will just have to rely on individual anecdotes that arise from doctors using innovative off-label treatments on patients." If you look at what various opponents of the Bill have been saying, it is that the Bill will 'undermine' or 'put patients off' from joining clinical trials. Effectively the charge is that the Bill will weaken the trials system. Futhermore, opponents have repeatedly claimed that the Bill will leave us with collections of anecdotes instead. Sarah Wollaston specifically used the phrase the 'medical anecdotes bill'. This is not a straw man of my invention but a very clear implication.<br /><br />Furthermore, Sarah Wollaston has twice now used a specific case of a constituent who has been sold a fake cure (GcMAF) as a convenient mechanism to attack the Bill, when clearly the case has occured under existing legislation. This is hardly a fair tactic - it's an emotive attempt to scare people.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-69393636664185156532014-12-16T14:52:31.431+00:002014-12-16T14:52:31.431+00:00'Undermining clinical trials' isn't th...'Undermining clinical trials' isn't the same as 'doing away with' them, is it?<br /><br />I also echo Rob's comment: why has the recording of treatments not been part of the Bill up till now? Pan said he understood it would simply be 'guidance notes that will be issued with the Bill', but you contradict this, saying it is the avowed intention that the recording of treatments in a database will be included in an amended Bill. Can you say at what stage this amendment might be published?Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-68519675078700601112014-12-16T14:28:54.821+00:002014-12-16T14:28:54.821+00:00You said it was the gist of what had been said, ci...You said it was the gist of what had been said, citing Dr Wollaston as an example when it clearly isn't. Also, I don't recall ever having seen any opponent of the MIB say this and it seems you can't provide any evidence for your straw man either, undermining the premise of your article.<br /><br />"And it is less of a strawman than Sarah Wollaston using a fake cancer cure like GcMAF (available now over the internet) and suggesting that the Bill will give carte blanche to scammers exploiting cancer patients."<br /><br />A straw man is a straw man. However, your new claim is that that Dr Wollaston suggests the Bill will give carte blanche to scammers with fake cures.<br /><br />It is perfectly clear that the MIB would at least protect patients from unqualified scammers (but it certainly does nothing to stop people falling prey to scammers on the Internet). Dr Wollaston did refer to those who might want to provide unevidenced treatments, but she made it perfectly clear (Column 842) that there are doctors who might like to provide treatments such as GcMAF. Of course, a doctor could provide GcMAF at present if he/she so wished: the MIB is not needed for that. What currently does act as a deterrent is the uncertainty of whether the doctor would be able to pass the Bolam and Bolitho tests in a court - tests that GcMAF would, IMHO, fail and deterrents that the MIB removes.Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-70517829580174411882014-12-16T14:01:15.497+00:002014-12-16T14:01:15.497+00:00Are you seriously suggesting that the Department o...Are you seriously suggesting that the Department of Health, the Saatchi team and the people at Oxford University are undertaking some sort of charade? Is this a conspiracy then to protect the drug companies?Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-28455312269621561222014-12-16T13:49:14.729+00:002014-12-16T13:49:14.729+00:00It looks to me like this 'guidance notes' ...It looks to me like this 'guidance notes' database is nthing but a fig leaf to hide the central embarassment of the Bill that all it does is transfer the risks of these unproven treatments from the Pharma Companies and the doctors who are prepared to use them firmly onto the shoulders of the sick and dying. Andy Lewishttp://ww.quackometer.netnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-80321462367046065632014-12-16T13:01:55.704+00:002014-12-16T13:01:55.704+00:00"Lord Saatchi has many times and publicly sta..."Lord Saatchi has many times and publicly stated he will put a mandatory obligation to register innovations under the aegis of the bill on a sharable database. He said this again on Dec 12 in the Lords."<br />In which case, why is a requirement to record treatments in a shareable database not been included in any version of the Bill, including the most recent post-Report one?Robhttp://twitter.com/pencilblokenoreply@blogger.com