NAMI Submits Testimony To Congressional Subcommittee On Hearing That Questioned The Legitimacy Of Mental Illnesses
American Academy Of Neurology (AAN) Sends Letter To Chairman Hoekstra Stating That Member Dr. Fred Baughman Did Not Represent AAN At The Hearing
On Behalf Of
The National Alliance For The Mentally Ill
On Behavioral Drugs In Schools: Questions And Concerns
Submitted To The
Subcommittee On Oversight And Investigations,
Committee On Education And The Workforce
U.S. House Of Representatives
September 29, 2000
Chairman Hoekstra, Representative Roemer and members of the Subcommittee, I am Rex Cowdry, M.D., Deputy Executive Director of Research and Medical Director for NAMI-The National Alliance for the Mentally Ill. On behalf of NAMI, a grassroots organization of over 220,000 consumers of mental health services and their families, I submit these comments for the record. At the outset, I would like to express NAMI's appreciation to the Subcommittee for convening this hearing on a very important topic -- prescribing medications to treat attention deficit hyperactivity disorder in school age children. In NAMI's view, this is an important issue for clinicians, policymakers, school officials and parents. We believe it is vital that public policy on health issues be shaped by scientific evidence. Congressional oversight and legislative action should be guided by the best research and the most knowledgeable experts about the diagnosis and treatment of psychiatric disorders in children. To date, the Subcommittee has heard from a very unrepresentative range of witnesses; we would like to encourage a more balanced examination of these issues.
My own background is as follows: I received my M.D. degree from the Harvard Medical School and trained in psychiatry at the Massachusetts Mental Health Center in Boston. From 1976 through 1999, I served in the Intramural Research Program of the National Institute of Mental Health. I have been the Clinical Director, the Acting Deputy Director, and the Acting Director of the Institute. On leaving government service, I joined NAMI as its Medical Director.
Frankly, I was first astounded and then outraged that the subcommittee would schedule a series of witnesses who are so clearly unrepresentative of the great majority of dedicated, concerned, and conscientious parents and professionals working to find the best treatments for children with attention deficit hyperactivity disorder. In addition, I was amazed that two of the subcommittee's three physician witnesses would represent fringe opinions about the disorder and about psychiatry. Finally, I found it remarkable that the subcommittee was apparently not interested in the decades of research about attention deficit disorder conducted by the federal government -- or in the opinions of either the Director of the National Institute of Mental Health or the Surgeon General of the United States about these medical issues. Because of the extraordinarily biased selection of witnesses, it is perhaps understandable that the Chairman might reach the conclusion that there is no professional consensus about even the existence of attention deficit hyperactivity disorder. Nothing could be further from the truth.
Attention deficit hyperactivity disorder is a relatively well-defined disorder in which a child shows cognitive deficits (particularly difficulties attending to an activity long enough to function successfully) and hyperactive behavior. When the appropriate, careful evaluations are performed by trained professionals, the disorder can be diagnosed with good reliability. Unfortunately, our children often do not receive this kind of careful evaluation. Lack of insurance coverage, limitations under managed care, a shortage of trained professionals, poor training of gatekeepers such as teachers and primary care practitioners - these and other factors produce poor care for our children.
These failures lead to two types of problems: inappropriate treatment and failure to treat. Some children are inappropriately begun on medications -- and because of inadequate evaluation of the effects of the medication, they may be maintained on medication they do not need. Often children and their parents should be taught behavioral strategies for home and school in addition to or instead of medication, but do not receive the training for the reasons noted above. Equally disturbing - and more common - is the failure to identify children whose lives would be dramatically changed for the better if their ADHD were identified and treated. The subcommittee could have heard a long parade of witnesses about the ways effective treatments, including medication, allowed them to change a pattern of failure in school, at home, and in friendships, into a success story.
Dr. Baughman's challenge to provide proof that ADHD is an illness cannot go unanswered - but first we would have to figure out what he means. If he means, show me the cause, much of medicine would fail - we can identify relatively few true causes.
If he means, show me a picture, we could point to the MRI brain imaging study of 57 boys with ADHD demonstrating changes in the right prefrontal cortex, caudate, and globus pallidus.
If he means, there's no lab test and no obvious pathology, it is difficult to see why a disorder of our most subtle, complex, intricately wired, and inaccessible organ, the brain, should have a simple indicator. But then again, syphilis, Alzheimer's dementia, porphyria, heavy metal poisoning, and numerous other illnesses were also "vague psychiatric illnesses" at one time.
In fact, there is broad scientific agreement that ADHD is a disorder, based on decades of NIMH-sponsored research. Certainly that is the conclusion of the Surgeon General's Report on Mental Health, the most recent and definitive statement of the research and the science underlying mental disorders. The Surgeon General devotes eight pages of the report to a review of ADHD research.
More importantly, there is broad scientific agreement that there are effective treatments for ADHD. The most recent and most definitive study of the treatment of ADHD, the NIMH Multimodal Treatment Study of ADHD, compared 14 month outcomes of 579 children randomly assigned to one of four treatment conditions - medication management alone, behavioral treatment alone, a combination of medication and behavioral treatments, and standard treatment in the community. The study demonstrated once again that medication has a substantial positive impact on symptoms and behavior at home and at school. The study also demonstrated once again that behavioral strategies have a useful role in effective treatment. These results are completely consistent with the evidence from decades of study.
Unfortunately, our knowledge about accurate diagnosis, effective treatment, and appropriate follow-up is often not applied in the community. This is not an indictment of the disorder. It is an indictment of how we diagnose and treat -- or fail to diagnose and treat -- our children with these illnesses.
I would suggest that anyone interested in the facts read the Surgeon General's report on mental health and visit the NIMH web site (www.nimh.nih.gov). Perhaps more importantly, anyone interested in the human side of these facts should talk with parents and children whose lives have been changed for the better by effective treatment. I would respectfully suggest that the subcommittee focus its attention on why our children with this illness are not receiving the evaluation and treatment they need to succeed in school - and ultimately in their lives.
AMERICAN ACADEMY OF NEUROLOGY LETTER TO THE CHAIRMAN
The American Academy of Neurology (AAN) sent a letter on October 5 to the Chairman on the Subcommittee on Oversight and Investigations, Representative Peter Hoekstra, to clarify misreprensation of the AAN at the September 29 hearing. The letter referred to the participation of AAN member Dr. Fred Baughman. As NAMI readers will recall from previous E-News and the testimony above, Dr. Baughman, described by the subcommittee in its press release announcing the hearing as a child neurologist with a career studying "real, bona fide diseases," called AD/HD "the biggest fraud in America." He called both AD/HD and mental illnesses "a neuro-biological lie." Later he called "psychiatry as a profession," a "fraud." The Academy letter acknowledges that Dr. Baughman is a member of the AAN, but clearly stated that he was not representing the AAN when he appeared before the Subcommittee. The letter goes on to state that this separation should be observed "in case Dr. Baughman addresses your subcommittee in the future."