Landover, MD - On Thursday, September 26, the House Committee on Government Reform, chaired by Representative Dan Burton (R-IN), will conduct a hearing entitled "Attention Deficit/Hyperactivity Disorders - Are Children Being Over Medicated?"

Four of the five witnesses -- invited by Representative Burton -- are reported to be spokespersons for or persons associated with the Citizens Commission on Human Rights (CCHR), an affiliate established 1969 by the Church of Scientology. CHADD is concerned that four witnesses associated with the hearing share the belief that AD/HD is a lie and a fraud.

They include:

* Lisa Marie Pressley

* Bruce Wiseman

* Dr. Mary Ann Block

* Patricia Weathers

As further context of the CCHR's philosophy, among their publications currently in circulation are "Psychiatry Betraying Families: The Hoax of ADD/ADHD and Other Learning Disabilities," "Psychiatry: Shattering Your World with Drugs," and "The Hoax of Learning and Behavior Disorders."

The fifth witness, invited at Mr. Burton's request, is Mr. Neil Bush, the President's brother, whose son was incorrectly diagnosed with AD/HD.

Through the efforts of Representative Henry Waxman (D-CA) to ensure a balanced discussion, Clarke Ross, CEO of CHADD and Dr. David Fassler, representing the American Academy of Child and Adolescent Psychiatry (AACAP) and the American Psychiatric Association (APA), also have been asked to testify. It is expected that the National Institute of Mental Health will also send a witness.

ACTION REQUESTED

Please review the testimony below and share your concerns with Rep. Burton about the lack of balance in this hearing. You are also encouraged to cc a copy of the letter to your own U.S. Representative.

Mr. Burton can be contacted at:

Dan Burton

Indiana-6th, Republican

2185 Rayburn HOB

Washington, DC 20515-1406

phone: 202-225-2276

fax: 225-0016

No e-mail address available

Contact information for representatives from your own state can be obtained through the THOMAS database at: http://clerk.house.gov/members/index.php

FULL TESTIMONY OF E. CLARKE ROSS, CHIEF EXECUTIVE OFFICER, CHADD

Statement to the House Committee on Government Reform September 26, 2002

"Attention Deficit/Hyperactivity Disorders - Are Children Being Over Medicated?"

Statement by E. Clarke Ross, Chief Executive Officer, CHADD (Children and Adults with Attention- Deficit/Hyperactivity Disorder) 8181 Professional Place, Suite 201, Landover, Maryland 20785

Mr. Chairman and Members of the Committee: My name is Clarke Ross. I am the Chief Executive Officer of CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder).

Headquartered in the greater Washington area, CHADD is the nation's leading advocacy organization serving individuals and families dealing with AD/HD. Under the guidance of the world's leading AD/HD experts, CHADD works to improve the lives of those with AD/HD and their families through advocacy, education, research and support. CHADD currently serves 20,000 dues-paying members in 246 chapters located in 37 states and Puerto Rico.

CHADD educates the public about AD/HD primarily through dissemination of practices, policies, research and published papers issued by the nation's leading scientific and medical institutions. This includes the publications and research of the United States Surgeon General, the National Institutes of Health, the National Institute of Mental Health, and the professional societies of physicians and other treating professionals and researchers in the mental health field.

Of utmost importance to CHADD are the evidence-based assessment and treatment guidelines of the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry. This body of evidence-based research emphasizes the importance of what is known as "multi-modal treatment."

Multi-modal treatment includes parent training in diagnosis, treatment and specific behavior management techniques, an appropriate educational program, individual and family counseling when needed, and medication when required.

Also of interest to CHADD are complementary interventions used in the treatment of AD/HD. While CHADD is not opposed to complementary interventions, it strongly believes further research is necessary and advocates that NIH, NIMH, and others in the research community conduct further investigation to determine the efficacy of these complementary interventions.

THE STORY OF ONE 11-YEAR-OLD BOY: ANDREW ROSS

Perhaps even more important than my role as CEO of CHADD, is my role as father to an eleven-year-old son, Andrew, diagnosed with the inattentive type of AD/HD, an anxiety disorder, and other related co-occurring learning disorders.

Like many families facing AD/HD and related conditions, my wife and I, over time, have employed a wide array of interventions, including several considered complementary in nature, which are described in greater detail further in this statement. None of the complementary interventions we employed were harmful. But perhaps most significant, none of them have demonstrated an impact. Moreover, none of them are supported by the evidence-based research to which we are firmly committed.

In short, the multi-modal approach described above -- parent training in diagnosis, treatment and specific behavior management techniques, an appropriate educational program, individual and family counseling when needed and, for us, medication provided and continue to provide the support that Andrew needs in order to thrive and flourish.

BACKGROUND

Andrew was born following a complicated delivery. When at age 11 months, he broke his ankle (which would not heal properly), follow-up assessments documented significant hypotonia and sensory integration challenges. At 21 months, he experienced his first unprovoked seizure with a pattern of seizures continuing for the next several years. Two EEGs later, many problems were confirmed. By two and still not speaking, Andrew's pediatrician referred him to the State of Maryland's Early Education Program. For the next several years he received intensive speech and language and sensory integration services. Andrew also has dysgraphia, which can best be described as a difficulty in automatically remembering and mastering the sequence of muscle motor movements needed in writing letters or numbers. Fortunately, with intensive assistance from the school occupational therapist, Andrew has largely overcome his dysgraphia.

By four, when Andrew entered a more formal education program, teachers began noting significant learning problems stemming directly from his inability to focus. He received numerous independent professional assessments, each affirming that his disabilities significantly impeded his ability to function at the level of his classmates. Andrew has always had difficulty with what now is referred to as "executive functioning" - brain actions of self control where he is unable to think ahead and consider "if-then" behaviors and their consequences.

My son does not have an occasional problem with distraction and attention. He has ongoing, continuous daily problems that result in overwhelming difficulties in many areas of his life.

No well-meaning parent sets out to medicate his or her child. Nor did we. But over time, given Andrew's learning and functional problems, we accepted the advice of child psychiatrists who felt our son would benefit from medication. Today, Andrew takes both a medication for attention issues and a medication designed to reduce his anxiety. A series of behavioral management and learning assistance programs also are used and are an essential part of his overall treatment program.

At age four, a child psychiatrist recommended that Andrew try a stimulant medication. We initially said no, as we wanted to first try other interventions. But by the time Andrew was seven, we said yes to stimulant medication. The other interventions had not worked in helping him pay attention. We now were ready to try medication.

We actually tried three medications before we found one that worked. The first two did not help his attention (nor did they have any side effects), but the third one did have significant results. To this day Andrew takes Adderall.

Andrew began using Prozac two and a half years ago because of a severe anxiety problem. He is anxious about many things. As one example of many, Andrew was so afraid of flying insects that three summers ago he would not go outside despite his love of baseball and basketball. A combination of behavioral interventions, cognitive training and medication has helped to reduce his anxiety. He remains uncomfortable with flying insects and bristles stiffly when they are around, but generally speaking he now can function quite normally. But his anxiety was not singularly confined to flying insects. Andrew is anxious about many things and many situations. As such, my wife and I are constantly developing behavioral interventions to deal with these varied anxieties.

Medication obviously is not perfect. For example, Andrew initially experienced a significant loss in appetite. Today, however, he only experiences a loss of appetite at lunch, proof that there are continual tradeoffs in the beneficial use of medication and side effects from such use. On the plus side, however, with the assistance of special education personnel and a multimodal treatment approach in place, including medication, Andrew can now better attend to learning in class, is less phobic, and demonstrates more socially appropriate behaviors with children his age.

As the parent of a child with multiple challenges, I resent those who suggest that my son needs only a little more discipline, structure, and learning. In direct contrast to the publications issued today by some of the hearing witnesses, I want to emphatically say that my son's problems are neither "lies" nor "frauds" nor the "failures of his parents." Andrew has a biologically based brain disorder that we and an extensive network of dedicated clinicians face and address on a daily basis. Andrew's life is filled with dedicated clinicians - from pediatrician, to child psychiatrist, to child psychologist, to neurologist, to speech pathologist, to a team of educators. Without their collective support, I cannot imagine where Andrew would be today.

As mentioned previously, we employ a variety of complementary approaches. These include visualizing and verbalizing training, sensory integration therapy, and visual tracking. Andrew responds best in small learning groups where constant feedback and support is provided. We use Dr. Thomas Phelan's 1-2-3 Magic approaches each and every day. And every day Andrew consumes fish oil supplements (Omega-3 Fatty Acids). But as noted above, while certainly not harmful, none of these interventions (other than 1-2-3 Magic) have yielded any immediate or even long-lasting positive impact upon Andrew.

The good news is that Andrew is making progress. The strides are slow yet steady. And like most families in similar circumstances, we are resolved to living life one day at a time. I share my wife's and my story with the hope that those unfamiliar with AD/HD will appreciate the complexity and difficulty of identifying and implementing key medical strategies designed to help children like our son Andrew.

THE EVIDENCE-BASED SCIENCE

In looking at the broader AD/HD picture - particularly with respect to the emergence of evidence-based science-it is essential to note the following key milestones:

* In 1998, the American Medical Association published an exhaustive review of the scientific literature concerning AD/HD, concluding that the disorder is real and that while there may be instances of over diagnosis, there is a greater problem of under diagnosis.

* In 1999, the National Institute of Mental Health (NIMH) published its first results from The Multimodal Treatment Study of Children with Attention-Deficit/Hyperactivity Disorder, a multicenter study evaluating the leading treatments for ADHD, including various forms of behavior therapy and medications, in nearly 600 elementary school children. The results indicate that long-term combination treatments as well as medication management alone are both significantly superior to intensive behavioral treatments and routine community treatments in reducing AD/HD symptoms.

* In 1999, the U.S. Surgeon General released the landmark Report on Mental Health, which devotes an entire section to the evidence-based science behind AD/HD. Among the important findings are that stimulants are highly effective for 75-90% of children with AD/HD, while the most effective interventions for AD/HD are multimodal treatment-which involves the use of medication with psychosocial, behavioral and related interventions. Finally, "recent reports found little evidence of over diagnosis of AD/HD or over prescription of  stimulant medications. Indeed fewer children (2-3% of school-aged children) are being treated for AD/HD than suffer from it."

* First in 2000 for assessment, and then in 2001 for treatment, the American Academy of Pediatrics (AAP) published clinical practice guidelines for AD/HD. These groundbreaking guidelines include endorsement of stimulant medications when appropriate monitoring and behavior interventions are also used.

* In 2002, the American Academy of Child and Adolescent Psychiatry (AACAP) published practice parameters for the use of stimulant medications in the treatment of children, adolescents and adults. The parameters rely on an evidence-based medicine approach derived from a detailed literature review and expert opinion.

SOME CHILDREN ARE TREATED INAPPROPRIATELY; SOME CHILDREN ARE UNDER-TREATED

In reviewing the developments above, it is simultaneously essential to note that both U.S. Surgeon General's reports on mental health (1999 on mental health research, and the 2001 report on race and culture) emphasize that some children are inappropriately identified while many children are never identified.

It therefore also becomes essential to comment upon public alarm that "AD/HD is over-identified and over- medicated" because of the over 700% increase in the use of stimulant medication in the school age population over the past decade. Before resorting to alarmist reactions, let us first examine the prevalence rate.

* The U.S. Surgeon General estimates the school-age prevalence of AD/HD to be between 3 and 5%. Even with the over 700% increase in stimulant medication use over the past decade, only 2 to 2.5 % of the school- age population currently receive stimulant medication. If medication is an appropriate component of multi- modal treatment intervention (as the  science informs us), then over half of those suffering the effects of AD/HD are not being effectively treated.

* The 3-to-5% prevalence rate may actually be a conservative rate. Two published studies by the Mayo Clinic of Rochester, Minnesota, one in the January 2001 issue of the Journal of the American Medical Association and the other in the March 2002 issue of the Archives of Pediatrics and Adolescent Medicine documented that 7.5% of all children presenting for any kind of medical treatment in Rochester over a seven year period had AD/HD.

* What is particularly alarming to CHADD is the tremendous variance of stimulant medication prescribing practices across the nation. While Dr. Julie Zito of the University of Maryland and Dr. Gretchen LeFever of Eastern Virginia Medical School have published studies about the significant variance within Maryland and Virginia, probably the single most informative published study was the May 6, 2001 Cleveland Plain Dealer article, "Ritalin Prescribed Unevenly in U.S." The paper's reporters studied for one full year the actual prescriptions written in every county in the nation. Some counties had 5% of the total school-age population and 20% of school-age boys on stimulant medication while other counties had practically no one receiving a stimulant medication. CHADD remains alarmed with this variance of practice.

CHADD believes that the single most important reason for such variance is the absence in clinical practice of the use of the AAP and AACAP evidence-based assessment and treatment guidelines. That is why CHADD is tirelessly working to educate the public about the AAP and AACAP guidelines and to advocate that physicians using such guidelines be financially reimbursed by health insurance payers at a higher rate than physicians not using such guidelines.

We also need better research about the prevalence of AD/HD and the number of children actually receiving such medication. While the Cleveland Plain Dealer and others have studied the numbers of prescriptions written, we really have no excellent database on actual numbers of children receiving such medications on a regular basis. Certainly, we must protect the confidentiality of individual children and their families, but we also need better aggregate data on overall usage.

For example, consider the data. The United States General Accounting Office in 2001 stated that there were 46.6 million public school students. Three-to-five percent of this total would be between 1.4 to 2.3 million children, not including students in both private school or home-school settings. If we use the Mayo Clinic 7.5 % prevalence rate, then 3.26 million school age children would be expected to have AD/HD - an appropriate number given such rates. CHADD commends the Centers for Disease Control and Prevention (CDC) for recognizing the need to better assess accurate prevalence rates, including funding for three prevalence studies.

CHADD REITERATES KEY ROLE PHYSICIANS, TEACHERS, AND FAMILIES PLAY IN RECOGNIZING AND TREATING AD/HD

CHADD is concerned that without proper context, and when sensationalized, alarmist statements and reports create confusion among the general public, patients and families, thus undermining the seriousness of AD/HD and the proven safety and efficacy of stimulant medications when properly administered by appropriate professionals.

CHADD believes that all families should have access to the best, evidence-based science in the diagnosis and treatment of AD/HD. We are therefore concerned when legislation is proposed that undermines this critical access-including the elimination of a teacher's freedom to recommend a comprehensive and complete medical assessment by persons licensed to perform such evaluations. Likewise, CHADD is appalled when children are inappropriately prescribed medication that they do not need. This is of particular concern when small subsets of children suffer significant side effects.

CHADD believes that legislation must not limit or undermine the ability of a medical professional, within their scope of practice, from treating AD/HD based on the most widely accepted evidence-based science. CHADD encourages all families and physicians to follow best practice assessment and treatment guidelines being uniformly implemented throughout the nation, specifically the current American Academy of Pediatrics (AAP) and American Academy of Child and Adolescent Psychiatry (AACAP) guidelines. Using the force of law and agencies of government-particularly criminal penalties-to monitor and enforce best practice treatment guidelines is an ineffective approach at best and disastrous approach at worst. Instead, ongoing training and education in the diagnosis and treatment of AD/HD should be encouraged among all physicians.

Teachers are frequently the first to recognize learning, functioning, and behavioral problems in the school setting and therefore should be able to advise parents of such observations. CHADD believes that professionals should act within their professional scope of practice. Thus, school personnel should not recommend the use of medication. Medication assessment and prescription is the role of the physician and- under limited circumstances-in a few states, other treating professionals too. However, teachers should be able to recommend a comprehensive and complete medical assessment by persons licensed to  perform such evaluations.

Because students spend a significant portion of their day in the classroom, the vital role that teachers play in providing observations to the diagnosing professionals cannot be underestimated. Effective communication among teachers, professionals and parents is essential and strongly encouraged. CHADD advocates a multi- modal approach to the treatment of AD/HD, including parent training in diagnosis, treatment and specific behavior management techniques, an appropriate educational program, individual and family counseling when needed, and medication when required. Medication is used to improve the symptoms of AD/HD. Research shows that children and adults who take medication for the symptoms of AD/HD attribute their successes to themselves, not to the medication.

DENIAL OF AD/HD REFUTED

The organized interests at this hearing claiming that AD/HD is a "biological lie" also state that there are no "biological imbalances" and "no laboratory tests established as diagnostic" for AD/HD. They go on to claim that AD/HD is a "100 percent fraud."

But science tells us a different story. The Surgeon General's report (page 144) concludes "AD/HD is the most commonly diagnosed behavioral disorder in childhood and occurs in three to five percent of all school-age children. The exact etiology of AD/HD is unknown, although neurotransmitter deficits (such as the dopamine transmitter), genetics, and perinatal complications have been implicated." The NIH Panel Consensus statement declares: "Although an independent diagnostic test for AD/HD does not exist, there is evidence supporting the validity of the disorder."

As previously stated, the NIMH MTA Study further documented that only 31% of the children with AD/HD have AD/HD alone with no other disorder. The study found that 40% of children with AD/HD had oppositional defiant disorder, 34% had anxiety disorder, 14% had conduct disorder, and 4% had a mood disorder. Those dismissing the existence of AD/HD repeatedly ignore these characteristics. A May 22 study by the Centers for Disease Control and Prevention (CDC) documented that half of the school age population with AD/HD also had a learning disability.

The existence of co-occurring disorders complicates assessment, complicates treatment, and increases the possibility of an inaccurate diagnosis. This only further reiterates the importance of the AAP and AACAP best practice guidelines.

CLOSING

I have devoted over 30 years of my professional life assisting individuals with cerebral palsy, schizophrenia, bipolar disorder, AD/HD, and other mental disorders. I find it frustrating and disheartening that I have to defend recognized science against science fiction. This is demeaning to those suffering from these disorders and to the millions of families who devote their lives caring for and supporting their loved ones.

The science speaks for itself. Even more important are the stories of untold millions who have either been helped by appropriate interventions - or worse, been denied access to the treatment they deserve. Instead of wasting precious time, energy and resources defending a disorder that clearly exists, why can't we simply move forward in applying the science to clinical practice and educational settings to make life better for those faced with these challenges? Why do some policy makers continue to play to those who claim that there are no mental disorders, that there is no science, and that anyone's science fiction is equivalent to the evidence- based science?

The reality that children and adolescents can and do suffer from AD/HD and other debilitating brain disorders, just as adults do, is finally being widely recognized. That is why we must continue educating others and ourselves about the broad spectrum of childhood mental disorders. We must continue joining forces with the scientific institutions and others. And we must do everything within our means to ensure that our children receive the tools they need to live a meaningful life, regardless of their disability, challenge or disorder.

E. Clarke Ross, September 23, 2002

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