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Brain Atrophy - Amphetamine based DrugsIf you get overwhelmed with the length of this document just do a word search for Brain Atrophy and see what it says - Rae70 EDUCATION AND HEALTH STANDING COMMITTEE INQUIRY INTO ATTENTION DEFICIT DISORDER AND ATTENTION DEFICIT HYPERACTIVITY DISORDER IN WESTERN AUSTRALIA TRANSCRIPT OF EVIDENCE TAKEN AT PERTH ON WEDNESDAY, 2 JUNE 2004 Members Mrs C.A. Martin (Chairman) Mr M.F. Board (Deputy Chairman) Mr R.A. Ainsworth Mr P.W. Andrews Mr S.R. Hill Co-opted Member Mr M.P. Whitely Education and Health Wednesday, 02 June 2004 Page 1 Committee met at 10.10 am BAUGHMAN, DR FRED Paediatric Neurologist and Author, examined: CARLISLE, MR RON Chairman, Citizens Committee on Human Rights, PO Box N1079, Perth, examined: The CHAIRMAN: Good morning. I am the member for Kimberley and Chair of this committee.Before we commence, I am required to advise you that a committee hearing is a proceeding of the Parliament and warrants the same respect that proceedings in the House itself demand. Even though you are not required to give evidence on oath, any deliberate misleading of the committee may be regarded as a contempt of Parliament. I remind those in the public gallery that at no time during the hearing can they interject or interfere with these proceedings. Have you completed the “Details of Witness” form and do you understand the notes attached to it? The Witnesses: Yes.The CHAIRMAN: Have you read the information for witnesses briefing sheet regarding givingevidence before parliamentary committees? The Witnesses: Yes.The CHAIRMAN: On behalf of the committee, I take this opportunity to thank you for appearingbefore us today. As you are aware, the committee is conducting an inquiry into attention deficit disorder and attention deficit hyperactivity disorder. Before we ask any questions, are there any particular issues that you would like to bring to the committee’s attention? Mr Carlisle: I would like to read from a prepared statement. I will then leave it to Dr Baughmanto give his evidence. The Citizens Committee on Human Rights is the local chapter of an international organisation called the Citizen’s Commission on Human Rights. CCHR was founded by professor of psychiatry Dr Thomas Szasz and the Church of Scientology. CCHR is an independent organisation set up to investigate and expose violations of human rights within the psychiatric industry. I am the chairman of CCHR here in Perth. We consider the false labelling and consequential drugging of children a violation of their human rights. Also, the lack of factual information given to parents about the dubious nature of the ADHD label stigmatising children and the dangerous nature of the drugs is a violation of their right to fully-informed consent. Since 1991, CCHR has said that antidepressants are dangerous and could cause suicidal thoughts. Earlier this year, the British Medicines and Health Care Products Regulatory Agency banned SSRI antidepressants bar one from being prescribed to children because of the risk of suicide. It has taken 13 years for the Australian Therapeutic Goods Association, along with the US Food and Drug Administration, to finally agree with this and choose to review the use of antidepressants. CCHR has also been saying this about the drugs to treat so-called ADHD. How many more years and how many more children are we to lose to these drugs before we do something? Are we to find out later, at a terrible cost to future generations of children, that it was a bad mistake? The Monthly Indexed Medical Subscriptions, or MIMS, is the manual doctors use to prescribe drugs. The 2003 MIMS states under the drug dexamphetamine that some of the adverse reactions Education and Health Wednesday, 02 June 2004 Page 2 are psychotic episodes at recommended doses, aggressiveness, anxiety, confusion, delirium, hallucinations, panic attacks and suicidal or homicidal tendencies. It further states that there is no specific evidence which clearly establishes the mechanism whereby amphetamines produce mental and behavioural effects in children. Remarkably, the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders No 4 - Text Revision - states that there are no specific physical features associated with ADHD. It states also that there are no laboratory tests, neurological assessments or attention assessments that have been established as diagnostic in the clinical assessment of ADHD. Additionally, it states that signs of this disorder may be minimal or absent when a person is receiving frequent rewards for appropriate behaviour, is under close supervision, is in their normal setting, is engaged in especially interesting activities or is in a one-to-one situation, e.g. the clinician’s office. So, a psychiatrist diagnosing a child cannot see it and cannot test for it, and it will probably not be there when the psychiatrist sees the child in his office. From the earlier evidence that the committee has been given, WA appears to be going the way of the trends in the United States. It is patently obvious that legislation is required to protect the rights of children and their parents. Schools, school administrators and personnel, and teachers specifically, should be excluded from the promotion and unqualified pseudo-diagnosis of ADHD. CCHR is aware that in Western Australia we are remote from the rest of the world and that it is not possible for this committee to visit the United States to become informed of the latest information. As such, we have brought paediatric neurologist Dr Fred Baughman to the committee so that he can update the members on the latest and historical data on ADHD. I have brought with me copies of the most recent Bills and resolutions passed and proposed throughout the United States, which are also available on the CCHR web site, fightforkids.com. Dr Fred Baughman has given me other information that I will provide to the committee later. If members want any further information, please ask. The CHAIRMAN: Will you table your prepared statement and the other documents you havementioned? Mr Carlisle: Yes; certainly. There is a copy for each of the committee members. Dr Baughmanhas also prepared videos on a national conference on ADHD in America - I believe one is 55- minutes long and the other is 3.5-minutes long - which address the specific issues he would like to raise. The CHAIRMAN: Documents tabled.Dr Baughman: I am very pleased to have the opportunity to be here to voice my concern aboutthis issue. I am a retired physician, neurologist and child neurologist. I have a research background. I have discovered and described real diseases. Throughout the late 1970s and early 1980s, I began to see in my practice a growing number of children labelled hyperactive child syndrome, minimal brain dysfunction and ADD. I would take a careful history and do a comprehensive examination, as with all patients, and I grew increasingly alarmed about this epidemic in light of the fact that I was not able to adduce evidence of physical abnormalities in these children. In other words, I was unable to determine that they were other than normal. Increasingly, when sending these children back to their schools and teachers, I was told by such personnel that if I could not find the ADHD, they would, or they knew someone who would, and that if I would not write the Ritalin prescription, they knew someone who would. I took to writing and speaking about my concerns throughout the last decade of my practice and then, as of retirement in 1993, I was able to devote full-time to this issue and to writing and speaking about it and to participating in medical legal cases bearing on this issue. I have testified in state legislatures in about nine states as we, in recent years, have passed legislation that would in effect ban teachers from participating in what are medical decisions to keep them from mentioning such diagnoses, such treatments and forcing parents to get their children to physicians. I testified Education and Health Wednesday, 02 June 2004 Page 3 before the US Congress in September 2000 and before the European Union in November 2001. I am in touch with persons here and all over Australia and have been sent items of concern on this issue from these colleagues. I mention a few of them. An article in the Sydney Morning Heraldrefers to Dr Kosteric of the General Practice Committee, whom I have had the pleasure of meeting, who said that he had great concerns about a 21-fold increase in the prescription of ADHD medication since 1990. He said that the diagnosis of ADD is entirely subjective. From the journal Paediatric Child Health , June 1996, J.J. Jureidini said that attention hyperactivity disorder is not adisease. He said that the symptoms of its three-dimensions - activity, attention and impulsivity - are normally distributed in the population with an arbitrary level of symptoms being designated as pathological; that is, being designated a disease. An article in the Melbourne Herald Sun ofFebruary of 1999 reported that the use of mind-altering drugs to treat hyperactive children has recently risen by more than 100 per cent in 50 countries. Australia is one of several countries in danger of seeing its use of Ritalin reach the very high levels of the US. The Sun Tasmania reportedthat one in four Tasmanian children in primary school is on drugs for behaviour problems according to a leading parent-support group. I am told that the rate of ADHD diagnosis and drug use here in Western Australia is four times the national rate and that the rate of prescribing is said to surpass that in the US, where I can tell you that currently the epidemic stands at six million to seven million, or roughly 11 to 12 per cent of our public school population. I will read some of the criteria from the Diagnostic and Statistical Manual No 4 of the American Psychiatric Association. It is these criteria authored by the APA that provide the diagnostic tool - the parent and teacher behaviour check lists. It calls for checking any six of nine items pertaining to inattention, which are as follows - (a) has to do with making careless mistakes (b) difficulty sustaining attention (c) does not listen appropriately (d) does not follow through (e) is not organised (f) cannot sustain mental effort (g) often loses things. Finally, there are criteria such as: is distracted, is forgetful, fidgets, leaves seat, runs and climbs excessively, is not quiet, is often on the go and talks excessively. If six of nine of these items are checked in the inattention or hyperactive categories, a diagnosis is made of a brain disease, and the parents of such a child are asked to believe that a brain abnormality, due to a chemical imbalance of the brain, has been diagnosed. I submit that if we do not abandon our commonsense and we read and re-read the criteria that psychiatry puts forth, and that increasingly other specialties have coopted into their practices, this does not meet the commonsense test and one should be immediately doubtful. I testified in hearings in the State of Tennessee in 1997, during which a young father testified about meeting his son’s psychiatrist for the first time. He had just gained custody of his boy, a 10-yearold, I believe. He asked his psychiatrist why his son was on Ritalin. The psychiatrist said that it was for his chemical imbalance. The father said, “I would like to see the laboratory results that designate that he has this chemical imbalance.” The psychiatrist said that he did not have the records at hand. The father persisted, and the psychiatrist said the records were in storage. The father persisted, and the psychiatrist became flustered and banished the father and son from his office - because there was no chemical imbalance; there were no tests. There never are. All physicians, even psychiatrists, go to medical school. We all study normal anatomy, biology, physiology and chemistry and then we study abnormalities or diseases. Abnormalities or diseases Education and Health Wednesday, 02 June 2004 Page 4 are those that are grossly evident, such as a mass or a growth from the shoulder or felt in the belly. They might be microscopic, as with the cells taken in a pap smear from a woman at her annual physical, or they might be biochemical, as with the testing that must be done to diagnose diabetes. Very simply, until any physician has demonstrated an objective physical abnormality, gross microscopic or chemical, they have not demonstrated the presence of disease and should not say that there is a disease present. In ADHD, there is no tangible gross microscopic or biochemical abnormality; yet this diagnosis virtually always leaves the diagnosing physicians to tell the parents and all concerned in the life of the child that there is a brain disease present and that it, indeed, needs treatment almost always with methylphenidate or an amphetamine, all of which are schedule 2 drugs, which means they are highly controlled substances under the International Narcotics Control Board, or, in the United States, under the Drug Enforcement Administration. Attempts have been made by CHADD in the United States and my own organisation, the American Academy of Neurology, to lessen the addictive classification of this group of drugs, but those attempts have all been turned back by the INCB and the DEA, attesting to the high degree of addictiveness of these drugs, not to mention their other dangers. All physicians have this duty of diagnosis of determining whether there is a disease or not. They then have a duty of informed consent, which is to tell parents and patients all the facts about their condition and about the drugs that might be used in their treatment. I submit that, in saying ADHD is a disease, they totally abrogate informed consent with that one statement alone. If they go on to categorise these drugs as non-addictive or hardly addictive, they defeat informed consent on yet another score. There is a line of research that organised psychiatry in the United States offers as its proof that ADHD is a disease. This research has mainly been done at our National Institute of Mental Health. This involves brain scans of a kind that we all have in our major hospitals at least - so-called magnetic resonance imaging scans. People who have had an automobile accident and a head trauma or who have mounting headaches, possible brain tumour, subdural haematoma and things of that sort, commonly get what is called a structural MRI brain scan. Back in 1986, a study was done - this one was not with an MRI; it was with the MRI predecessor, a CT scan - by the group at Ohio State University and it did CT scans on 24 young adult males, all of whom had had hyperactivity, all of whom had been drugged - that is, had been treated. They scanned 27 matchedcontrol subjects. They found that 58 per cent of the ADHD subjects had shrunken brains - brain atrophy - that was evident to the naked eye of the radiologist, whereas in the control group - the normal controls, never treated or diagnosed as ADHD - only one of 27 had such brain atrophy. These authors, Nasrallah et al, suggested that it might be that the drugs were causing the brain atrophy, not the never-proved entity ADHD. Beginning in 1990 up to the present time there have been a total of roughly 14 studies that similarly, though using MRI technology, have looked at populations of ADHD subjects and compared them with matched normals. In all instances, as reported in 1998 by Swanson and Costellanos at the consensus conference, which is the substance of the tape I have submitted, the ADHD groups had brain atrophy or shrinking. James Swanson was the presenter of the review of that brain imaging literature. He presented it, and concluded that it was clear that ADHD was causing this on average 10 per cent brain shrinkage and that this was the proof that ADHD was a brain disease. I was an invited presenter at that consensus conference. I took a floor microphone and asked Dr Swanson why he had not told the audience that all of the ADHD cohorts in this research had been drugged - every last group, which is true to this present day - and that the only physical variable was the drugging. That these drugs cause brain atrophy or shrinkage has been proved time after time - as I said, a total of approximately 14 studies, which are all summarised and reviewed in a review article by Johnathon Leo and David Cohen that I will leave with the committee. However, here they were prepared to represent this as the “always needed proof” that ADHD was a real disease. From 1990 to 2004, they have continued to do the studies, knowingly always on treated populations of ADHD subjects, always down-playing the drug exposure, and always concluding that this was due to ADHD - the proof that ADHD was a disease. However, the fact of the matter, as shown by the Education and Health Wednesday, 02 June 2004 Page 5 Leo-Cohen Review, and others, is that there has never been any proof and there is no proof that ADHD is an actual brain disease. There is irrefutable proof that these drugs are causing, among other things, brain shrinkage, which is a gross abnormality of the brain. The committee will have the videos and they will see my encounter with Dr Swanson. You will hear the consensus conference panel conclude that we have no evidence that ADHD is a brain disorder or brain dysfunction. We have no test to diagnose it. I conclude by urging that, if it is contended that this is a brain disease and that so many of the children here in Western Australia have it, the committee write to the Australian and/or the Western Australian neurological association and ask it for proof that this is a disease and what tests are available to diagnose it objectively. I also ask that the committee write to the Australian and Western Australian pathological association and ask it whether there is any proof in the form of biochemical tests or if there is any histologic confirmation at post mortem or in any way during life by which to diagnose this entity. With that, I will close and entertain any questions members wish to ask. The CHAIRMAN: Do you have any documents that you would like to table? You said you havean article. Dr Baughman: Yes. It is the article of the recent review. It was written in winter of 2003. I haveleft 30 documents that I have submitted. Many of those are letters from officials or from scientists at the NIMH. One is from the director of the NIMH, Stephen Hyman, of about September 2000 confessing that as of that time there was no proof and so on. The CHAIRMAN: Thank you very much for your presentation.Mr M.F. BOARD: Good morning, Ron and Fred. Welcome, and thank you for taking the time topresent to our committee. This committee has been established to try to resolve what is now a difficult and complex issue and to give some direction to state policy in Western Australia, because there are mixed opinions that we are hearing, and there are also a lot of parents who seek to do the right thing by their children but are confused about what is the correct thing to do and what is not. You are obviously fairly definite in your views, which is fine. However, you base your views on the fact that there is no evidence for the existence of ADHD. To me that is fairly clear, because if there was evidence, we would not necessarily be having this inquiry, nor would there be as much confusion in the community. It seems to me that there is not a lot of evidence for a range of “mental illnesses”, and for people who seek psychiatric attention or who seek support from psychiatrists or psychologists or other people involved in mental health there is very rarely evidence. There might be physical evidence as a result of an outcome, but in terms of the existence of their particular mental illness it is often difficult to diagnose. Therefore, for the majority of the community we rely heavily on the advice of psychiatrists and I guess history of events and similar activity and so forth. You base your evidence on the fact that there is no proof for ADHD. We could apply that to many other so-called mental illnesses as well. Why single out ADHD for a situation for which there is no proof when there are many other areas of mental illness - if it is a mental illness - in which we would find it very difficult to apply a given test and get some evidence that it exists? Dr Baughman: The topic at hand is ADHD - attention deficit hyperactivity disorder - which hasnot only become a psychiatric entity but also in the States the American Academy of Paediatrics has reprinted the DSM 4 criteria for use in diagnosis by the academy. That so-called guideline for diagnosis of ADHD was co-authored by the Academy of Paediatrics, the Child Neurology Society and the American Academy of Family Practice, so it is not just a matter of psychiatric practice and psychiatric criteria. The other reason for concern is that this entity is uniformly represented to be a brain disease due to a chemical imbalance of the brain. This almost uniformly is what parents in the US are told. They are not told that these are just troublesome behaviours, which is what I feel they are. In fact, at the ADHD consensus conference in 1998, eminent paediatrician William Carey reviewed these vague subjective criteria and said that these do not constitute anything abnormal and Education and Health Wednesday, 02 June 2004 Page 6 that one would look at these criteria and have to conclude that the children are normal, even if troublesome, but they are normal. So a treating physician would tell a naive trusting parent or patient that the child has six out of nine of these behaviours; therefore, this is a brain disease and the child is not normal any more but is abnormal. That is what they are being told. They are being told that this is a disease that is urgent to treat. In the States, increasingly parents are being told that it is essential that they treat, and if they do not they are negligent parents and they will lose custody of their child. It concerns me when the basic requirements of informed consent drafted at the Nuremberg trials following World War II are flagrantly violated and when parents have the nature of the behaviours so misrepresented to them, for whatever motivation. I cannot say why given physicians do this. Is it to make patients out of normals, which is what happens? Normal children become patients, and then when they are drugged that really affirms that they are patients. They do not get off these drugs. They are on them in the long-term until either they rebel as teens and take themselves off; or, if they succumb, they stay on these drugs, and others, in addition, as other diagnoses are done. I would have no problem at all if these were represented to be troublesome behaviours, which we would say are our parental responsibility, or our teachers’ responsibility, to deal with in commonsense, talk, therapy and counselling ways. However, instead, what are nonspecific subjective behaviours are undoubtedly generally being framed as a disease - as a physical abnormality that must be treated medically. Mr M.F. BOARD: If, in your opinion, ADHD was not a mental disorder or disease, yet it is clearthat there are levels of extreme hyperactivity among some people, particularly some children, and when some drugs - Ritalin or dexamphetamine - from the evidence we have been given have a clear effect in being able to provide what appears to be a better outcome for those children in terms of their studies, social behaviour and so forth, would you feel that would be a reasonable result? In other words, if it is not a disease any longer - let us say we have assumed that - but it is an extreme case of hyperactivity, which is caused by whatever, but it becomes so antisocial and so difficult for the individual and his family that their life suffers, in your opinion would that be a case in which people would be entitled to seek some medical attention that included drugs? Dr Baughman: In the informed consent risk benefit analysis in medicine, one always has a diseaseon the one hand, and treatment, surgery or a drug on the other hand, which always have to be balanced. In ADHD there is no discernible disease on the one hand, and there are drugs with multiple and very tangible risks on the other hand. As a matter of fact, even ADHD advocates at the National Institute of Mental Health point out that a diagnostic trial is never valid and that normals are always changed by these drugs, so practitioners say we are going to try a child on this drug, and if they are better and more quiet, more subdued and more attentive, that makes the diagnosis. There was a paper in 1978 authored by Judith Rapaport of the NIMH that debunked that notion, so it is not appropriate practice to conduct a trial of a drug and to think that that is a diagnostic trial. Secondly, about long-term outcomes, the ADHD literature is full of trials and of studies that average a few weeks in duration. Among the longest of such studies was that of Gillborg a couple of years ago, which was an 18-month study. I have forgotten exactly what it was. There are almost no long-term studies, so there is almost no research or empirical literature to guide us as to what happens with these kids when they are on these drugs for years. We just do not know. I have my own suspicions, but that is anecdotal as well. The empirical research literature does not guide us. Mr M.F. BOARD: To summarise what you are saying, even though you recognise the difficultiesassociated with hyperactivity and so forth, for you the downside of the prescription drugs that are given to deal with those issues is far worse than the perceived benefit? Dr Baughman: Yes. I think the risks - when we are talking about drugs in this category ofaddictiveness and of dangerous side effects, in the decade 1990 to 2000 the voluntary reporting system - the FDA medical watch program- reported that there were 186 deaths due to Ritalin alone, without any of the amphetamines. That is a voluntary reporting system thought to account for more Education and Health Wednesday, 02 June 2004 Page 7 than 10 per cent of the actual incidents. I am talking about children who are on the go, who are hyperactive and have these troublesome behaviours. There was an era not too long ago when I was in school, and much more recently than that, when there were no such diagnoses and no such drugs, and we did not see predictable grim outcomes for children said to have these behaviours, so when dealt with in commonsense, sympathetic and understanding ways by the adults in their lives - their parents and their teachers - they turned out to enter normal adult life. Mr P.W. ANDREWS: To take your point that ADHD is not a neurological disorder and that thebehaviours that are classified now as pertaining to ADHD are not neurologically caused, what are the causes of hyperactivity and impulsive behaviour? Dr Baughman: I think that if a child, for example, is in the third or fourth grade and is called uponto read aloud and reads only at first grade level, you will see that child sweat, become fidgety, and perhaps tremulous. You may have children in your grade schools who come to school underfed. You may have children coming from homes in which they are dealt with too harshly, perhaps physically or corporally punished. There are infinite unhappy situations in childhood, all of which can lead to these non-specific behaviours. It is the duty of the adults in their lives - their parents and teachers - to understand these possibilities and to try to know whether such things are at work or are not at work. However, there is nothing more specific than that going on in this list of behaviours that the American Psychiatric Association seeks to medicalise but that Dr William Carey says should not be medicalised. He made a heartfelt plea to just call them normal. Mr P.W. ANDREWS: I want to ask about the medication used to treat ADHD. For any drug inAustralia - I do not know about the United States - if you take out the little piece of paper that is usually attached to the medication it will give a long list of possible side effects, yet for the majority of people who are taking the particular medication it is quite safe. In other words, I am saying that in 99 per cent of cases a particular medication might be perfectly safe but it might affect one per cent. With the medication that is used to treat ADHD, could it be that in 99.9 per cent of cases the medication is safe? Dr Baughman: I have treated lots of patients who have epilepsy, and I have had lots of kidsreferred to me who have had the ADHD diagnosis and are on drugs. When you are talking about nervous system active drugs such as anticonvulsants, virtually all of them have some side effects. The patients do not feel right. They become tremulous, they have a rapid pulse and they have a rise in blood pressure. I think almost all patients going onto nervous system active medication have side effects, and this is part of the process of adjusting the dose as they go on these medications. There are many kids for whom the side effects continue, and they are kept on medications regardless because the adults in their lives want them on these medications. There are lots of kids who articulate when they are out of earshot of parents, doctors, teachers and so on that, “I don’t like this stuff. It makes me feel weird. It makes me feel odd”. I can tell you that the frequency of aggressive behaviour and anger that comes from going onto amphetamine and methylphenidate is very high. I would say such things are probably witnessed in greater than 50 per cent of kids. Mr M.P. WHITELY: There is a whole list of potential side effects listed for drugs such as dex,which I believe is the US brand name for dexamphetamine. They are mainly short-term side effects. To your knowledge have any long studies been done as to the effect of the use of amphetamines on a developing brain? Dr Baughman: As I say this, the MRI brain scan literature that I cited, which the ADHD researchcadre presents to the public as proof that ADHD exists, is in fact irrefutable proof that the grossly evident - radiographically evident - brain atrophy is due to these drugs. As I mentioned before, there is almost no real long-term empirical research literature. Some practitioners have a very glowing view of what these drugs do and never see side effects. I as a neurologist get these kids referred to me when they have side effects. I would see them developing so-called Tourette syndrome or tics. It is Tourette syndrome if the tics develop out of the blue with no drug in the Education and Health Wednesday, 02 June 2004 Page 8 picture. If they never had tics before they went onto Ritalin or onto amphetamine, then it is Ritalininduced or amphetamine-induced tics. If the exposure to the drug is kept up long enough, the tics can become a permanent fixture. Tics will be things like shoulder hiking and neck turning. There are patients who have first seizures on these medications. For patients who have a seizure disorder and are on anticonvulsant medication, their seizure threshold is lowered; so in my opinion no patient with a seizure disorder should be put on these drugs, because it makes the likelihood of seizures increase. Some patients on therapeutic doses become frankly psychotic, confused and delirious. Cardiac side effects are notable, because they are the cause of most of the deaths. I have been consulted on 11 deaths, most of which were cardiac deaths. Matthew Smith from Detroit had been on Ritalin for five years. He did not like being on it, and his parents did not want him on it, but the school coerced the continued use of drug. He fell over and died at age 13. He had a grossly enlarged heart - what we call cardiac hypertrophy, or hypertrophic cardiomyopathy. The coronary arteries were markedly narrowed. The medical examiner said this was the heart that you would usually see in chronic amphetamine addicts and that Ritalin had unquestionably been the cause of death. Most cardiac deaths are due to cardiac arrhythmia and cardiac arrest, as in the case of Stephanie Hall of Canton, Ohio. Her Ritalin was increased, because her grades had fallen and she was unhappy about that. The first night of the increase, she bid her parents good night and went to bed, and she died in bed. She had an autopsy, and that was a cardiac arrest, I have no doubt, due to Ritalin. Several of the other of the 11 cases were cardiac arrests as well. If you look at the physicians desk reference and at the side effects, there are side effects for virtually every organ system. You must always remember that on the disease side, there is no proven disease. The risk benefit ratio under the circumstances in my view is not justifiable. Mr M.P. WHITELY: I will read something from Glaxo Smith Kline’s web site. It is themanufacturer of dexamphetamine. It lists a whole range of side effects, and at the end it says - Individual patient response to amphetamines varies widely. While toxic symptoms occur as an idiosyncrasy at doses as low as 2 mg, they are rare with doses of less than 15 mg; 30 mg can produce severe reactions, yet doses of 400 to 500 mg are not necessarily fatal. That would tend to indicate that the response is highly individual; that is, it varies across individuals. Is that your experience? Dr Baughman: I think it would be very variable. Some patients might have a flagrant psychoticepisode on a relatively low dose of methylphenidate or one of the amphetamines, and the majority going onto these drugs would not, so I do agree with that. Speaking of manufacturers, I would point out that Novartis, the manufacturers of Ritalin, has come out and been quite forthright in saying that ADHD is a neural-biological disorder - a disease. A statement like that coming from the manufacturer I think is fraud, because as will you see in the review of the literature, there is no proof that it is a disease. The CHAIRMAN: In your opening remarks you discussed suicide as a result of over-medication.I have a personal interest, because I am the member for the Kimberley. The Kimberley has the highest suicide rate in Australia. The second highest, of course, is in Mandurah. They are both regional centres in Western Australia. We do not actually have a high level of medication in relation to ADHD. However, to assume that there is suicide if people medicate is a bit of a problem for me. Can you explain that a bit more? Dr Baughman: I do not recall mentioning suicide.Mr Carlisle: I think that was me. I can address that.The CHAIRMAN: That is fine.Mr Carlisle: The statement comes directly from the Diagnostic and Statistical Manual No 3. Itspecifically states that withdrawal from the drug can produce suicidal tendencies. The other statements that I read came directly from the manual that doctors use to diagnose all forms of drugs. Education and Health Wednesday, 02 June 2004 Page 9 What I read was directly from the drug dexamphetamine. There is nothing in those books that correlates specifically that ADHD will produce a higher suicide rate in a given area if prescribed as a drug. What it states is that suicide and homicidal tendencies, aggressive behaviour, are adverse reactions to these drugs. What the causes may be in your area may be some other issue. The CHAIRMAN: It is just that it pricked something for me.Mr Carlisle: I understand what you are saying. If you address the drug and those who take them,and the literature with regard to that, then all we are doing is stating what has been established to be fact. This is established within organisations such as the International Narcotics Board, the Drug Enforcement Agency, the Food and Drug Administration overseas and here in Australia - the various government organisations which acknowledge that. The CHAIRMAN: The other assertion that I have heard here today is that the rights of childrenare not being upheld within the whole process from diagnosis to medication. The issue I have then is that if the parents are not provided with all the information, then there is no process of informed consent, yet suicide is something that becomes a problem at the other end when you are trying to get the kids off the medication. The issue for me is that if there is no informed consent, and, as you assert, the rights of the child are not paramount, then at the other end parents are not aware of the threats and the real issues of children suiciding. Mr Carlisle: The issue to look at here is whether the information is true and factual, and whetherknown information throughout the medical profession, and specifically psychiatry, is made available to parents when they are given this diagnosis, and obviously also information of the drug and treatment. Parents have complained to us about being coerced, although certainly not to the degree that is happening in America. When I or any members of our organisation discuss the possible side effects of these drugs, they indicate that they were never made aware of some of them. They are often made aware of mild symptoms, but they are certainly not made aware of the possibility of what Fred mentioned; namely, tics, otherwise known as dyskinesia. A mother asked me about what was going on and in discussion she mentioned that her son had developed tics. I mentioned that perhaps she should go back to her physician and address this issue, because that was possibly a result of the drugs. She then talked to me some months later and said she had taken the child off the drugs and the tics had disappeared. What was of concern was that she was not aware that they could develop, and she was not aware that they could become permanent. Dr Baughman: On the subject of suicide, and talking about the amphetamines, of whichmethylphenidate can be put in that category, the Drug Enforcement Administration background paper of 1995 discussed methylphenidate and the amphetamines as one, saying they all shared essentially the same addictive potential and essentially the same side effects. It has long been known that deep, unremitting depression is a side effect of chronic amphetamine abuse and of trying to withdraw from amphetamine, so suicide is very much a risk of chronic use and abuse of this group of medications. One other thing I would like to mention is that when a normal child is said to be brain diseased and have a chemical imbalance of the brain, this is invariably stigmatising. In the United States I can tell you that once this label is applied there is almost always an automatic application of one of these drugs and that further affirms in the self-image of the child that they have something abnormal about them that requires a pill for them to be able to control themselves and behave normally. There is invariably a stigmatising effect. A normal child has his self-image changed, and it also changes the parents’ image of the child, their peers’ image and the community’s image. In the United States once you have a diagnosis of a health condition like this your insurability is diminished. The cost of health care insurance increases for you. You are suddenly no longer able to consider a career in the armed forces nor in many jurisdictions in the United States in police and Education and Health Wednesday, 02 June 2004 Page 10 fire work. The diagnosis has very grave implications. If you do not have objective evidence of an abnormality of disease, it is truly unfortunate to label or brand a person a abnormal or diseased. Mr M.F. BOARD: I am sure you have been asked this question many times throughout the courseof the inquiries that you have done throughout the world. However, so that we can get it on our record, obviously many people in the medical fraternity have a different opinion. Many paediatricians prescribe these prescription drugs. Your opinion is that the drug has a down effect which is worse than the benefit, yet we have heard evidence, and in fact I have visited a number of heroin-type clinics at which those doctors say that, according to them, the majority of their patients, who are in the main ADHD affected, are undiagnosed, and had they been diagnosed earlier it might not have led to their illicit drug use. They are very firm in that opinion. Their opinion is that the dangers of not being prescribed are far worse than the outcomes for some. I am sure there are down sides for some, as there would be for many other drugs. I imagine there is likely to be an effect. How do you answer that sort of thing? It is hard to believe there are that many ill-informed paediatricians and others who are doling out prescription drugs solely because it is an easy out or solely because they will get repeat attendances and they will make money or they are tied up with a drug company that will make money out of the issue. I do not believe that to be the case. What makes these people ill-informed or go down that path? Is there any legitimacy in these people who say unprescribed diagnoses of ADHD are an even worse effect? Dr Baughman: I cannot begin to explain their motivation. I come at this in a rather onedimensionalway - as a neurologist and diagnostician, whose first obligation to my every new patient was to determine whether there was an abnormality or not. If there is not, there is no need in that patient to ask which disease. The patient goes out the door to a mental health provider or psychologist or something like that. If there is some abnormality, it becomes my duty to define that abnormality, what we in medicine call differential diagnosis. What I have told you here today is that ADHD has not yet met the criteria for a tangible, objective abnormality or disease. That being the case, here on the risk side, there is no proven disease, but on the treatment side, there are real risks such as addictiveness, cardiac problems, central nervous system side effects and so on. I would not be justified in starting chemotherapy in a patient before having biopsy confirmation of a malignancy. I would not be justified in starting insulin before knowing full well what the blood sugar range was. I would not be justified in starting radiotherapy for an intracranial tumour without a good idea of what the histology or microscopy is. This is the point of concern that I hope I have been able to share with you today. Why other practitioners do what they do, I cannot say. I can only tell you that the fact that we in the United States have six million to seven million children, all of whom were said to be normal when they were born, and who walked and talked on time, and who were normal when they walked down the school house path, and all of whom have been labelled and drugged thusly with these dangerous drugs, has me mightily alarmed. I sense a degree of alarm in this community. The motivation of health care professionals in doing this when they have access to no proof other than what I have articulated to you, you will have to sort out. Mr M.F. BOARD: That is what we are trying to.Mr Carlisle: I will address the second aspect of your question regarding whether untreated ADHDdiagnosed patients have a tendency to become drug abusers. I am unaware of any valid scientific proof that that is correct. There is one study - a Californian study, which we put in our submission - that indicates that adults who had been diagnosed and treated as children were three times more likely to become cocaine abusers. That does not indicate necessarily that ADHD is a cause but quite potentially that the drug they were on leads them on to further drug abuse. The drug itself is chemically similar to cocaine insomuch that when they do drug trials on cocaine they often replace the cocaine with methamphetamine. It is still a valid cocaine trial but they use methamphetamine instead because humans and animals cannot tell the difference between cocaine and methamphetamine. Education and Health Wednesday, 02 June 2004 Page 11 Mr P.W. ANDREWS: I heard there was a correlation between illicit drug use and the prescriptionof ADD medication. Is that correct? Dr Baughman: Yes. Also at the 1998 consensus conference at our National Institute of Health, DrNadine Lambert of the University of California, Berkeley, presented her ongoing prospective controlled follow-up study of more than 400 children with ADD-ADHD diagnoses drugged, and with a control group - matched controls - of normals not drugged. This is by far the biggest, most valid such study addressing the issue of addictiveness of these drugs. She concluded at the analysis of the data as of 1998 that there was no doubt that there was an increased rate of the use of addictive substances generally and of cocaine in particular in children who were ADHD treated and that there was an increased incidence of smoking on the short-term end of lifetime smoking up to that point. Since 1998 and near the end of 1998, several small studies have been rushed into print that have, I think, attempted to counter the conclusions of Dr Lambert. The first of those was by Dr Joseph Bederman and associates from Harvard University. I think they presented 29 subjects and concluded that ADHD children not treated with these substances of addiction are much more likely to become addicts. So they maintain not only that ADHD is a disease but also that it is a disease a feature of which is an addictive propensity. They concluded in rationale that is truly amazing that the sooner and more comprehensively these ADHD children are treated with substances of addiction, the less subsequent addiction they manifest in later life. I personally think that and other small studies like it, often cited by Novartis, even in ads, are merely attempts to counter the study of Lambert. Mr M.P. WHITELY: It is interesting to hear your comments on the relationship between drug useand use of ADHD medications. In Western Australia, the rate of legal prescription for amphetamine for ADHD is four times the national average and the rate of abuse of illicit amphetamines is actually twice the national average. That tends to fly in the face of the argument that unmedicated ADD leads to drug abuse. It in fact indicates that there may be some sort of nexus - some sort of black market trade - in amphetamines. I have certainly heard lots of anecdotal evidence to that effect. Is that something of which you are aware from your experience? Dr Baughman: We are seeing these drugs everywhere among our youth. I have a niece who isnow in college in Florida and she tells me that seven out of 10 fellow students are using Ritalin or adderall or something of the sort to help them prepare for tests. It is no longer unusual to hear of kids in grade school - under 12 years of age - pedalling these drugs in the schoolyard or immediately outside the schoolyard or of teachers pilfering the nurse’s supply in the schools, or of school coaches passing out the drugs or urging kids to take them. Their availability has become truly alarming. Further, with regard to drugs of addiction, I think your observations thus far tend to support the research of Dr Nadine Lambert, for which I will happily provide references as soon as I return home. Among the other systems of tracking drugs of addiction are what we call the DAWN system - the drug abuse warning network system - which is run by a government mental health agency. The DAWN system tracks emergency room visits for complications of drug use or abuse. The number of emergency room visits across the United States for Ritalin and amphetamine use has just skyrocketed, almost surpassing that for cocaine. I think as of 1996 it was on a level with cocaine. The CHAIRMAN : Thank you for that. You have referred a couple of times to “normals”. Canyou define for me what normals means? Dr Baughman: A normal child?The CHAIRMAN: Yes. You said normals. I am wondering, when you say normals, whether youmean a normal child; and, if that is the case, what is a normal child? Dr Baughman: I am talking about my reality with regard to that term and my reality as aphysician. All physicians have a reality. All physicians, when they go to medical school, study pathology, which means disease, which means abnormality, and then we are all taught to Education and Health Wednesday, 02 June 2004 Page 12 distinguish diseased patients from normals. We are all taught that, even those who subsequently go into psychiatry. The CHAIRMAN : I am actually a social worker in a previous life, so I am curious about why thatdefinition was made. That is why I have asked the question. Dr Baughman: Social and psychological and mental normalcy and abnormality is another system -another definition entirely - but the medical definition requires a gross microscopic or biochemical abnormality. It has to be an objective abnormality. That is what medicine requires. If you were to come to my office as a physician, I should not call you diseased or abnormal medically unless I could find an object of abnormality defined in one of those ways. The CHAIRMAN : I mean psychologically. You were talking earlier about a diagnostic tool anddifferent sorts of behaviour. Dr Baughman: The diagnostic criteria that I read to you before do not just mean that if you comein with your child and say he does not sit still, he blurts out, he jumps up out of his seat - The CHAIRMAN : Is this where the diagnostic tool comes from - the American PsychiatricAssociation’s Diagnostic and Statistical Manual? Dr Baughman: Yes. I think it is on about page 78.The CHAIRMAN: I actually have it here. I was listening to you earlier. It mentions inattentionhyperactivity. I have had 17 children come through my house over the past 15 years, and every one of them has done these things, so I am wondering: are these kids normal, or what? Dr Baughman: I am not the one trying to tell you that this constitutes an abnormality - a medicalabnormality. The CHAIRMAN: I know.Dr Baughman: If someone wants to give a child a powerful drug, and if they use the term “thischild has got a neurological or biological abnormality of the brain”, and you look at this list, if you are a parent, your antennae should go up. The CHAIRMAN : That does not count for the biological ones. My two biological children areworse! Dr Baughman: I think that is why you have to keep coming back to that page, because they areusing that page, and they are saying that if you are the parents, or you are the teacher, and you have checked six out of nine of those, that is a brain disease. The CHAIRMAN : Then my kids are all brain diseased!Dr Baughman: That is what is being said throughout the United States, not just by psychiatristsbut by paediatricians, general practitioners and neurologists - who should know better - and so on. Parents have to have their wits and commonsense about them. The CHAIRMAN: I am obviously an Aboriginal woman, and part of my electorate comprisesremote Aboriginal communities. Every single kid in those communities is hyper - I mean, really hyper. You have to run to really keep up with them. There must be other reasons. I understand your point that children have the rights of other human beings, even though they do not necessarily have the representation. You are asserting that there needs to be informed consent, and at the moment there is no evidence, so I take that on board too. However, the one little thing that I am a bit concerned about is that there is something that obviously exists that causes these children to behave in that way. I understand that in the cultural context that I come from, that is normal behaviour for children in a remote community. I understand in my own home, from a cultural context, that their behaviour is as normal as breathing, because that is the context that they are brought up in. However, from what we are talking about here, we have these poles, and, in the middle, judgments seem to be made. My concern is that I do not think any of us has the right to do Education and Health Wednesday, 02 June 2004 Page 13 that, based on the tools that we have right now. What we want to do is get the information. I really appreciate what you have said, because you have been quite candid, but I still do not have an answer. I am hoping that we will get somewhere. I will leave it at that. Mr M.F. BOARD: Doctor, just as another point of view, evidence has been given to us by adultswho have said that they were never diagnosed with ADHD at school, but they have realised that they have had a difficult social situation, a lack of attention - a range of activities that you have described, but probably in an exaggerated sense - and they have gone through life dealing with this. They have then been diagnosed by someone as having ADHD later in life, and they have taken some prescription drugs, and they have indicated to the committee that life has then become very clear. They indicated to the committee that it was like having blurred vision and it suddenly becoming very clear, and for them their life changed significantly. They gave clear evidence that they felt as though something had been wrong with them all this time that had been undiagnosed, and that they now feel that they are coping better, their social situation is under control, they can deal with pressure situations, they can deal better with their jobs, and so forth. A lot of evidence was given along those lines. For us as a committee, obviously these people have some difficulty, whether it be a brain disorder, a mental disorder or something else, but they felt they had this abnormality, and it is now under control. What would you say to that? Dr Baughman: Well, I would say that I too hear from people and get e-mails or phone calls frompeople who are angry with me for the stand that I take because they believe that they have got this entity - this disease - and that the amphetamine that they are living on is a medical treatment without which they would not be able to function. However, those are in the realm of individual reports and anecdotes. There is no long-term evidence to buttress the regular lifetime prescription of these entities, and, more fundamentally, there is no proof and no test that determines that they have got an actual disease that needs such drugging as treatment. I have met many a drug abuser who swears that he or she has been very happy to have the ADHD label appended and has been very happy to have his or her situation get a medical stamp of approval, but there is no empirical long-term literature to support the people who give you those glowing reports and who are really very difficult, if not impossible, to deny. They make a very compelling case, but that is not in the realm of proof in the medical literature. Mr P.W. ANDREWS: Michael virtually asked the same question that I was going to ask, but Iwas going to give a specific example of an 18-year-old girl who had struggled through primary school and was then diagnosed as having ADHD and was medicated, and she said her life had changed after she was medicated. Given the answer that you have just given, is a possible explanation that she has just matured or some other factor has changed rather than the medication? Dr Baughman: Yes.The CHAIRMAN: Individuality.Mr P.W. ANDREWS: Some things are happening here as well, but in the United States foruniversity entrance there are dispensations for people with learning disabilities. Is ADHD one of those? Dr Baughman: I believe so. If patients have had what is considered an appropriate psychologicalor psychiatric assessment to validate a diagnosis - a specific reading disability, dyslexia, or ADHD - then yes, the person may be allowed to take an untimed test. This happens even for the LSAT - the law school admissions test - and the MSAT - the medical school admissions test. These entitlement have been legislated for. Our Congress I feel has been listening to and believing testimony from US psychiatrists since 1970 that ADHD is a disease. Mr R.A. AINSWORTH: My apologies for not being here at the start of your presentation, andyou may have already covered this, but I have been looking at recent reports from both the United States and Australia about the growing levels of obesity in young children. A lot of that is brought Education and Health Wednesday, 02 June 2004 Page 14 about by dietary changes that you and I might not have been subjected to in our youth. There is now more use of artificial colourings and all that sort of thing. How much research are you aware of in the United States that has been done on the effects of the changing dietary habits of children and how that might be correlate to their behaviour and hyperactivity? Dr Baughman: Back as far as the 1970s there was a debate about food colourings being a causalfactor in so-called hyperactivity or brain dysfunction, and there was a series of pretty well-authored controlled studies. I have forgotten the name of it, but there was an elimination diet, and a man’s name was attached to it, that serially removed various food groups and colourings. However, that did not hold up under research scrutiny. Similarly, there was a careful controlled study of children whose parents viewed them as rendered hyper by sugar content. Mark Wolraich at Vanderbilt University authorised a very careful large controlled study of children whose parents thought they responded in that way to sugars, and he found under objective observation that they could not validate that. I do not know if there have been any more recent studies. There have been a lot of blind alleys in research so far as ADHD and learning disabilities are concerned. Most of the blind alleys have to do with the fact that there is limited proof of a specific physical abnormality or marker by which to objectively identify the entity at hand. The CHAIRMAN: That concludes today’s hearing. The standing committee will send you atranscript of the oral evidence that you have presented today, along with a letter that explains the process for making any corrections. Any alterations must be confined to the correction of errors. It is not an opportunity to add bits and pieces, or whatever. If there are any parts of the evidence that you would like to expand on, you can make a supplementary submission. You will be given 10 working days in which to return the corrected transcript to the committee office. If the transcript is not returned within that time, it will be deemed to be correct. I take this opportunity, on behalf of the committee, to thank you for addressing the committee. We really appreciate all of the information that you have provided to us. Mr Carlisle: Dr Baughman is leaving on Friday and is planning to go to Sydney. He has thenchosen to have five days in Fiji to relax. That may make it a little tight to meet that 10-day time frame. Is there some way in which we can address that? The CHAIRMAN: We will negotiate that. That is not a problem.Dr Baughman: We arrive home on 12 June, so if we could perhaps make that 10-day period -The CHAIRMAN: A 20-day period!Committee adjourned at 11.43 am Education and Health Wednesday, 02 June 2004 Page 15 |
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