Is Your ADHD Support Group a Front Organization for the Pharmaceutical Industry?

By Richard DeGrandpre, Ph.D.

On May 18, 1999, the New York Times reported that “social phobia ranks today as the third most prevalent psychiatric disorder in the United States……….affecting an estimated 19 million Americans, according to the Anxiety Disorders Association of America. Many are to bashful even to talk to therapists.” In the same week, the Boston Globe reported that “Epidemiological studies have found that acute social anxiety is the third most common psychiatric disorder in the United States………. affecting up to 13 percent of Americans. Jerilyn Ross, president of the Anxiety Disorders Association of America……she hopes a publicity blitz planned by………..SmithKline Beecham will raise awareness of social anxiety disorder and lead more people to seek help, which could include psychotherapy instead of drugs.” Why were the Boston Globe and the New York Times both writing about “social phobia disorder” in the same week, and why would a drug company spend its money to “raise awareness” of a mental-health disorder? The answer: the FDA had just approved a drug for the treatment of social phobia. As the Boston Globe put it, SmithKline Beecham makes the drug Paxil, which was “the first drug approved by the FDA specifically for treating social anxiety disorder.”

Notice how, in the media reports just quoted, the drug company isn’t claiming that the social phobia “disorder” affects millions of people. Rather, it’s an organization with a professional-sounding name, and one that appears to have nothing to do with the pharmaceutical industry: the Anxiety Disorders Association of America. If these claims were presented by a drug company they would likely appear to the public and news organizations as self-serving and biased. If, however, they are presented to the public by an organization that seems only to have the health and welfare of the public in mind, they seem objective and credible. This is certainly what drug-company executives believe, which is why they go great lengths to create and influence what are essentially front organizations for the pharmaceutical industry.

Consider the case at hand. The Anxiety Disorders Association of America, ADAA, receives so much funding and influence from the industry that it is misleading to suggest that they are not an intricate part of it. The Boston Globe and the New York Times both received much of their information for the above reports from an ADAA press release, treating it in just the manner that the industry would want: as objective information from an independent organization. As a reporter for the Chicago Sun-Times makes clear, however, the ADAA is neither neutral nor objective: “I recently received a press release from the Anxiety Disorders Association of America. It said if your child is afraid of going back to school, maybe it’s not normal, maybe your child needs drugs. The release says three children in every class have an anxiety disorder. The solution? Well, enclosed are details for a drug company-sponsored workshop showing the wonders of Paxil and similar drugs.”

With funding coming directly from Paxil’s maker, ADAA did much more than just send out press releases. The summer of ‘99 also saw a barrage of advertising by ADAA, which asked people to imagine being “allergic to people.” A poster they used had a picture of a young man staring despondently into a coffee cup while a happy “social” couple sat at the other end of the table. The implication is made clear by the caption, which reads: “Over 10 million Americans suffer from social anxiety disorder………the good news is that this disorder is treatable.” In addition to a toll free number and a website listed, the poster indicates support, not from a drug company, as it should, but from three nonprofit groups: the American Psychiatric Association, the Anxiety Disorders Association of America and Freedom From Fear, which together form what is called the Social Anxiety Disorder Coalition. Like ADAA, the other two organizations also receive substantial funding from the pharmaceutical industry. “Funding for their public awareness campaign comes from a far less visible partner: SmithKline Beecham, the pharmaceutical giant whose flagship antidepressant is Paxil,” writes Michelle Cottle in The New Republic (August 2, 1999.) Cottle also notes that the APA’s social phobia website is paid for by SmithKline, as is ADAA’s, and that, on July 19, 1999, ADAA would hold a press conference to announce the findings of a study, paid for by various drug makers, suggesting a huge impact of anxiety disorders on America’s productivity. Behind all this is ADAA’s corporate advisory board, which is made up of representatives from different drug companies.

The ties between drug companies and organizations like ADAA do not end with public ads and education. As front organizations, they also direct the public toward support groups that share their two-pronged bias, that the disorder in question is really a legitimate medical disorder in need of medical treatment, and that this treatment will most likely involve psychiatric drugs. The support group is in many ways the most important step in the process of getting people on the latest pharmaceuticals, since it is the support group that will come into direct contact with the individual or parent. At the ADAA website (www.adaa.org), for example, one finds the following description under “Self-Help Support Groups”: Self-help and support groups for anxiety disorders are a way of empowering people to help themselves, and others, on the path to recovery. Participation in a self-help group can end the painful isolation of suffering alone with a disorder that is disruptive and debilitating for the individual and those people around him/her. An effective group will help members achieve recovery through mutual support as well as provide them with updated information about causes and treatment, eliminating some of the myths about anxiety disorders. The ADAA Self-Help Support Group Network is available in nearly all states and various countries around the world. The list of support groups is provided as a service of the ADAA……….The ADAA is constantly listing new groups and updating information about current groups. Please contact– ADAA at 301.231.9350, or by email at self-help@adaa.org for additional information about self-help support groups, including: How to start a group of your own; Adding a new group to the ADAA network; Notification of any changes in a group’s status or contact information. What the ADAA website fails to disclose is that they are there first and foremost to serve the interests, not of the public, but of the pharmaceutical industry, and that the support groups they are recommending are likely to be doing this as well. Consider the case of CHADD.

CH.A.D.D., which somehow translates into “Children and Adults with Attention-Deficit/Hyperactivity Disorder,” asserts on its website (www.chadd.org) the following: With over 22,000 members in 225 affiliates nationwide, CHADD is the nation’s leading non-profit organization serving individuals with Attention-Deficit/Hyperactivity Disorder (AD/HD). Through collaborative leadership, advocacy, research, education and support, CHADD provides science-based, evidence-based information about AD/HD to parents, educators, professionals, the media and the general public.

Clearly CHADD is a powerful organization, and one that is likely to attract many if not most American parents confronting a possible diagnosis of “ADHD” in their child. What is not clear, especially to those who stray into the CHADD web of “support”, is what the organization is really about. Founded in 1987, CHADD, which estimates that 10 to 20 percent of school children have ADHD, organizes speaking events, publishes a monthly newsletter (Chadderbox) and a glossy magazine (Attention!), and operates an impressive website. CHADD claims that “No matter how many sources of information are out there, CHADD is the one you can trust.”

This “trust” depends greatly, however, on what you want from CHADD. If you want an organization that has longstanding ties with pharmaceutical interests, and that selectively recruits only scientists proven to be pro-drug to their advisory board, then you can trust CHADD; if you want an organization that unquestionably embraces ADHD as an inherited disease for which parenting and culture play no role, either as causes or solutions, then you can trust CHADD; and if you want an organization that acts as a powerful lobby for the growing population of ADHD parents and children, then you can trust CHADD. If however, you want an honest organization that acknowledges its pro-drug and pro-disease agenda to its prospective (and current) members, then you cannot trust CHADD; and if you want an organization that carefully considers, or even considers at all, the findings of scientific and epidemiological studies showing that ADHD has strong social and cultural inputs, that psychostimulants may very will cause brain damage, and that psychostimulant drugs work more for parents and teachers than they do for children, then again you cannot trust CHADD.

In October of 1995, the US public television network, PBS, aired a critical “Merrow Report” on CHADD, ADHD, and Ritalin called “Attention Deficit Disorder: A Dubious Diagnosis?”, anchored by John Merrow. The program documented in detail the deception used by the organization, including the concealment of its ties to the drug industry. Starting in 1988, more than $1 million has poured into the organization from the maker of Ritalin (then Ciba-Geigy, now Novartis); CHADD received $748,000 for Ciba/Novartis just in the years 1991-1994. The Merrow Report documented this and showed how, in turn, CHADD did the dirty work of the drug company. They do this by policing media coverage on “ADHD” by propping themselves up as “the” independent, national support organization for “ADHD”and by lobbying the US Government, including the Department of Education, on behalf of Ciba/Novartis. In one instance, CHADD worked vigorously to have Ritalin reclassified by the US Drug Enforcement Administration (DEA) as a less dangerous drug. As a Schedule II drug, Ritalin is considered a potentially addictive drug, with restrictions placed on its annual production quota and with certain states monitoring who and how much the drug is prescribed. Getting it reclassified as a Schedule III drug would mean that it could be touted as being benign and could be obtained more easily. It would also mean that prescription refills could simply be called into the pharmacy, rather than requiring a new prescription each time.

When a senior person at the US Department of Education was interviewed for this program by John Merrow, he was asked whether he knew CHADD received considerable funding from Ciba/Novartis, to which he replied that he had no awareness of such monies. By that time CHADD had obtained a several hundred thousand dollar grant from the Department to make a video about ADHD, and was also helping to author materials for the Department of Education. Yet the Department of Education had no idea of CHADD’s significant ties with the industry. The Department’s spokesperson was then asked if he thought he had been mislead by CHADD, and that the organization was doing the work of the drug company. Indeed he did.

In part because of the Merrow Report, the DEA decided against softening the classification of Ritalin. Instead, it published a report that was highly critical of CHADD. Mary Eberstadt summarizes the report in her 1999 Policy Review article “Why Ritalin Rules: Backed by scores of footnotes and well over a 100 sources in the medical literature, this report amounted to a public excoriation of CHADD’s efforts and meticulous description, alarming for those who have read it, of the realities of Ritalin use and abuse. ‘Most of the ADHD literature prepared for public consumption and available to parents,’ the DEA charged, ‘does not address the abuse liability or actual abuse of methylphenidate [Ritalin]. Instead, methylphenidate is routinely portrayed as a benign, mild stimulant that is not associated with abuse or serious effects. In reality, however, there is an abundance of scientific literature which indicates that methylphenidate shares the same abuse potential as other Schedule II stimulants.’ Ciba-Geigy, the DEA observed, ‘stands to benefit from a change in scheduling of methylphenidate.’ It further observed that……..‘abuse data indicate a growing problem among school-age children,’ that “adhd adults have a high incidence of substance disorders,” and that “with three to five percent of today’s youth being administered methylphenidate on a chronic basis, these issues are of great concern.” Eberstadt also describes how the DEA was contacted by the International Narcotics Control Board (INCB) of the United Nations, which expressed concern to them about the financial ties between CHADD and Ciba/Novartis. According to the DEA, the INCB charged CHADD with being a vehicle for marketing a controlled substance directly to the public, which is a isolation of the Controlled Substances Act of 1971, an international statute to which all signing countries, including the US, are bound.

Despite the dubious nature of CHADD, the organization continues to have enormous power. In 1998, for example, the US National Institutes of Health (NIH) convened a Consensus Conference on whether “ADHD” was a legitimate disorder and whether drugs like Ritalin were effective in treating it, whatever it was. The Consensus Conference consists of a panel of scientists who, after hearing testimony from invited “experts” on the subject, assemble a report that is then published by the NIH. When the Conference was organized, CHADD played a significant role in deciding who would and would not be on the panel. As a result, the report was strongly biased in favor of the disease model of childhood, as well as the use of drugs to “cure” it. With the use of Ritalin and other stimulant drugs rising sharply in the 1990’s, people often wonder if, or believe that, drug companies are conspiring on a continual basis to put more and more kids on Ritalin and other drugs. The actual truth is a bit more complex than this. As the example of CHADD illustrates, as well as the case of “social phobia disorder,” drug companies have a more nuanced method of promoting their interests, which pay off in big dividends long after the money has been spent. Drug companies spend money in a targeted fashion, early on, planting seeds that will grow into an institutionalization of the “problem” and the “treatment” that they are so anxious to sell. Specifically, drug companies realize that they do not really need to push their drugs directly, knowing that once the so-called medical disorder–“ADHD” or “ADD”–is treated as a real medical disorder or disease, drug sales will follow.

As psychiatrist and historian David Healy remarks in his book, The Anti-Depressant Era, “When we stop by the pharmacy to pick up our Prozac, are we simply buying a drug? Or are we buying into a disease as well? Drug companies obviously make drugs, but less obviously they make views of illnesses.” In an early example of this, Healy describes how, in the 1960’s, the drug company Merck, maker of the antidepressant amitriptyline, marketed the idea of depression by buying and distributing 50,000 copies of a book that encouraged the “recognition” and “treatment” of depression in medical settings. A more recent example is a book on obsessive-compulsiveness by psychiatrist Judith Rapoport called The Boy Who Couldn’t Stop Washing. The book was a strong seller and, as Healy points out, Rapoport was featured on various television shows, essentially selling the “disorder.” Rapoport, who was also chief of the US National Institute on Mental Health’s Child Psychiatry Branch, has strong ties with the drug industry. As Peter Breggin, M.D. points out in Talking Back to Prozac, Rapoport was receiving, via a private organization called The Foundation for Advanced Education in the Sciences, considerable funds from at least two drug companies, Eli Lilly and Ciba/Novartis. The method of the pharmaceutical industry madness, David Healy suggests, is now clear: a relatively rare psychological problem is known to exist (such as depression, social phobia or hyperactivity), a drug is “discovered” to have an effect on the problem, the problem is defined as a pervasive and well-defined disorder, and from that moment on, the prevalence of the problem and the use of the drug expand exponentially. Two examples: the rate of depression in the 1950’s was estimated at about 50 million, whereas today it is estimated at 100,000 per million; in 1975, 150,000 American children were said to be “ADD” (or “ADHD”), whereas today it is estimated at about eight million children.

Drug companies sell psychiatric drugs by promoting the “awareness” of so-called mental diseases. Thus, when looking at CHADD and other support-group organizations, the first thing to notice is not how the pharmaceutical drugs are being pushed, but rather how the disorder, “ADHD,” is being sold. Few parents realize what exactly they are buying into when they accept a diagnosis of “ADD” or “ADHD”; nor do they realize that this is what CHADD-like organizations are asking them to do. What is obvious is that the labels of “ADD” and “ADHD” are applied to a diverse group of children who are viewed as having problems with attention, hyperactivity, and/or impulsivity (or are showing poor academic performance.) The label means much more, however, as is shown in casual statements like “my child has ADHD.” Here the label goes from being a loose description to a hard explanation, suggesting that “ADHD” is a physical thing–a problem existing within the child–that is the cause of the behavioral or cognitive problems. This has the effect in turn of isolating the problem within the child–it’s biological and thus a medical problem–setting the stage for the pharmaceutical solution. To be sure, this is exactly what organizations like CHADD mean by “ADHD,” arguing as they do that the problem is physiological one that can be treated but not cured. Notice, however, that there are no medical tests, and there is no proof there is anything biologically wrong with the child. All that exists are the so-called “symptoms,” which are as likely to be symptoms caused by the world of the child as they are evidence of a problem existing with his or her brain. Indeed, how else can we explain relative to earlier generations, why so many children are viewed today as being either impulsive and inattentive?

All this boils down to the following: If you’re a parent wanting unconditional and uncritical support of your choice to give Ritalin or other drugs to your child, then a group like CHADD may be right for you. And if you live in the United Kingdom rather than in the United States, all you need to do is look for the “ADD” or “ADHD” label in the name of the organization, as, for example, in ADDERS, ADDISS, LADDERS, ADDCONTACT, or ADDNET. Unlike UK organizations like Stimulants Are Not The Answer (http://www.santa.inuk.com), OVERLOAD or Successful Learning, these organizations embrace the “ADD” or “ADHD” diagnosis. In doing so they lock themselves within the assumption that “ADHD” is a thing located inside the body, like a disease–a medical disorder–rather than realizing and acknowledging that it is really a diagnosis pushed by the medical and pharmaceutical industries as a means to an unjust economic end, the selling of powerful stimulant drugs. As such these organizations are best viewed as part of the institutionalization of the medical model, whether they know it or not, grown out from root organizations like CHADD, the seeds of which were planted by the pharmaceutical industry.

If, on the other hand, you are someone who’s concerned with the future of your child (or grandchild), knowing that a quick-fix drug solution only masks the problem, then “ADD” support groups may not be for you. Trust not in “ADD” labels and organizations but rather in the belief that all children have the potential to live well-adjusted lives.

Richard DeGrandpre, Ph.D., is a psychologist and independent science writer and has been published in a great variety of both professional and popular publications, including American Psychologist, The Sciences, Common Knowledge, Psychology Today, Cerebrum, and Adbusters. He is the author of RitalinNation: Rapid-Culture and the Transformation of Human Consciousness and Digitopia: The Look of The New Digital You. He is an Associate Editor of AdBusters and resides in Vancouver, British Columbia.