Duty to Warn
The National Alliance on Mental Illness (NAMI): Just One of the Many Cunning Front Groups for Marketing Psych Drugs for Big Pharma
By Gary G. Kohls, MD
Excerpts from: https://www.cchrint.org/issues/psycho-pharmaceutical-front-groups/nami/
“He who pays the piper, calls the tune.”
In the late 1970s and 1980s, prominent American Psychiatric Association (APA) psychiatrists, who were also directors and researchers with the National Institute of Mental Health (NIMH), were in need of more government funding, so they devised a plan to create patient advocacy organizations (PAOs) with the intention of getting these groups to help lobby Congress for increased funding for psychiatric research. The groups that emerged first on the scene were: The National Alliance on Mental Illness (NAMI), the Anxiety Disorders Association of America (ADAA), the National Depression & Manic Depressive Association (NDMDA, and the National Alliance for Research on Schizophrenia and Depression (NARSAD).
“In an incestuous relationship, many of these groups were formed by the directors or researchers from NIMH—the very organization that needed mental health advocacy groups to make demands on Congress for increased funding. All of them had board or advisory board members with financial ties to Pharma and the majority of them were heavily funded by Pharma.
This cunning marketing/lobbying strategy is still going on to this day and few physicians – and fewer politicians and patients – have seen through the subterfuge.
This is the strategy in a nutshell: “Set up and fully fund PAOs to lobby for the governmental funding needed for Big Psychiatry and Big Pharma while pretending to be “advocates” for the mentally ill.
NAMI was founded in 1979 with tens of millions of dollars of start-up funding coming from Big Pharma companies that marketed psychotropic drugs. The group continues to rely upon pharmaceutical funding and has used up more than $41 million since 1996. A U.S. Senate investigation revealed that in just two years alone (2006-2008) Big Pharma funded NAMI to the tune of $23 million – about three-quarters of its donations.
Groups like NAMI were established by representatives of the National Institute of Mental Health (NIMH) and the American Psychiatric Association, all of whom had conflicts of interest that were not disclosed. They have successfully secured billions of tax dollars for NIMH and psychiatric researchers.
Here are some facts that reveal some aspects of what could be described as the unholy alliance between Big Pharma and Big Psychiatry:
- Between 1996 and mid-1999, 18 drug firms gave NAMI $11.72 million, including: Janssen ($2.08 million), Novartis ($1.87 million), Pfizer ($1.3 million), Abbot Laboratories ($1.24 million), Wyeth-Ayerst Pharmaceuticals ($658,000), and Bristol-Myers Squibb ($613,505).
- NAMI’s top donor was Eli Lilly. The company gave $2.87 million, $1.1 million of which was given in 1999 to help fund NAMI’s “Campaign to End Discrimination” against the mentally ill. This was a marketing scheme aimed at finding ways to force more insurance companies and government health care programs to quit “discriminating” against the psychiatry and Big Pharma’s mentally ill customers.
- In 2002 – 2003, pharmaceutical companies gave NAMI a further $4 million per year, according to a 2009 lawsuit naming NAMI.Eli Lilly donated at least another $3 million to NAMI between 2003 and 2005.
- In 2009, the US Senate Finance Committee investigated this conflict of interest and found that between 2006 and 2008, another $23 million had been given NAMI, representing about three-quarters of its donations. It included an AstraZeneca grant of $1.44 million in 2008.
- Documents The New York Timesobtained showed that drug makers had also given NAMI direct advice about how to advocate forcefully for issues that affect industry profits. For example, on December 16, 2003, NAMI leaders met with AstraZeneca sales executives. Slides from a presentation delivered by the salesmen showed that the company urged the alliance to resist state efforts to limit mental health drugs. “Solutions: Play Hard Ball,” one slide was titled. “Hold policy makers accountable for their decisions in media and in election,” another stated.
- NAMI also failed to disclose that Eli Lilly’s marketing manager Gerald Radke ran its entire operation. In 1999, Radke was a Lilly paid “management consultant,” then left Lilly and served as NAMI’s “interim executive director” until mid-2001.
- In September 2009, media exposed how Pfizer had funded NAMI “in order to turn the nonprofit into a ‘Trojan Horse’ that would promote the antipsychotic drug Geodon for non-approved use in children. The number of antipsychotic scripts written for children doubled to 4.4 million between 2003 and 2006.
- During the time he was president of NAMI, James McNulty received thousands of dollars for regularly speaking on behalf of Pfizer and other drug makers at various company sponsored events.
- The March, 2000 newsletter of the Washington State Association of Counties credited former Eli Lilly executive turned NAMI Washington lobbyist Brad Boswell, and NAMI’s director Tom Richardson, for getting the legislature to spend $1 million on atypical “antipsychotics”. A lawsuit against Lilly in which NAMI is named points out that in 2000, Lilly gave NAMI Washington State $91,000. “During the time, NAMI Washington State, in an effort led by NAMI lobbyist Brad Boswell lobbied the state legislature for $1 million specifically for atypical antipsychotic drugs….NAMI also joined a suit initiated by the Pharmaceutical Research and Manufactures of America (PhRMA) against the state of Michigan in order to increase physician access to higher cost pharmaceuticals—including atypical “antipsychotics”—under the state’s Medicaid program.” (Point 197 of the lawsuit).
- Between about 2001 and 2003 psychiatrist Rex Cowdry was Medical Director of NAMI. He spent 23 years at NIMHand was its acting director (1994-1996) during which time he told Congress—are for than 40 years of federal funding and while demanding millions more—“We do not know the causes [of mental illness.] We don’t have methods of ‘curing’ these illnesses yet.”
- On February 12, 2001, NAMI sent out a press release heralding the approval by the FDA of Geodon. When the drug had come up for approval in 1998 the FDA refused to approve it due to concerns about a heartbeat irregularity that can be caused by it, leading to sudden death. However, NAMI intervened directly, and soon the FDA was singing a different tune about Geodon. By April 2001, Geodon had already been approved for use in 46 state Medicaid systems. Pfizer may have received an assist on this from NAMI in their “grass roots advocacy” lobbying of the federal Health Care Finance Administration (HCFA Medicaid and Medicare oversight agency) to force Medicaid to pay for atypical (new) antipsychotics.
- In a 2006 lawsuit filed by the “Local 28 Sheet Metal Workers,” a union health and welfare fund, against Eli Lilly it is alleged that the drug company’s funding of and partnership with NAMI in the late 90s/early 2000s was “designed to accomplish through a non-profit organization what it could not on its own: giving the appearance of independent analysis and a grassroots movement encouraging the use of atypical antipsychotics by state and private insurers.” According to the lawsuit: “The scheme worked and Lilly certainly benefited from its significant donations to NAMI. Zyprexa was the leading “antipsychotic” in the world in 2000, capturing nearly 40% of the global antipsychotic market. A year later, Zyprexa was sixth highest selling pharmaceutical product in the world, with $3.2 billion in sales.” 
- It also reports that in 2001 the “Access to Effective Medications” brochure produced by NAMI National for legislators and paid for by Eli Lilly—lays out a blueprint for nationwide NAMI lobbying of state governments to reduce or remove any limitations for atypical antipsychotics, again down playing the side effects of such drugs.” (Point 176)
- In April 2002, the Government Accounting Office issued a report entitled “VA Health Care: Implementation of prescribing guideline for atypical antipsychotic drugs generally sound.” The VA’s policy on antipsychotic drugs was simply to ask psychiatrists to use less expensive one, which the GAO found was a sound policy. The VA was trying to control costs, since the cost of antipsychotic drugs for the agency had shot up 29% from $123 million in 2000 to $158 million in 2001, and was eating up 7% of the VA’s total drug budget. NAMI and the National Mental Health Association (Mental Health America) were cited as the lone critics of the GAO policy. This was cited in a similar lawsuit to the Sheet Metals union, but filed in 2006 by the Sergeants Benevolent Association and Health and Welfare Fund on behalf of itself and others (Point 198 of lawsuit).
- Such a policy would have no effect whatsoever but to continue to drive up VA usage of the most expensive antipsychotics, sending greater and greater revenues to the drug makers who donate so generously to NAMI.
- No doubt unknown to the GAO was that both groups had helped Big Pharma devise a psychiatric drug plan (see TMAP below) that pushed the most atypical antipsychotics for states’ use.
- On December 18, 2003, The New York Times also reported how NAMI had bused scores of protestors to a hearing in Frankfort, Kentucky, took out full page ads in newspapers, and sent angry faxes to state officials, all protesting a state panel proposal to exclude the antipsychotic drug Zyprexa from Medicaid’s list of preferred medications. According to the article, “What the advocacy groups did not say at the time was that the buses, ads and faxes were all paid for” by the manufacturer of Zyprexa, Eli Lilly.
NAMI’s Many Faces
- The National Alliance for the Mentally Ill Children and Adolescents Network (NAMI-CAN)was formed in May 1990. It produced newsletters that ran initial articles touting the benefits of SSRI antidepressants, newly on the market in 1988, such as “Serotonin and the Neurobiology of Depression” Under its website, it is “extremely pleased” that the New Freedom Commission report (NFC) on mental health “calls for mental health screening” and particularly the use of TeenScreen, a non-scientific questionnaire that could label and stigmatize any child as “depressed” and requiring dangerous antidepressants. It calls on its members to report to NAMI national any “anti-screening attacks.”
- In 1995, NAMI formed the NAMI Research Institute (NRI) with E. Fuller Torrey (NIMH, APA) as president. Board members included Laurie Flynn and Dr. Robert Post (NIMH, APA).Its mission is to “drive national, state, and local debates on reforms and investments in the nation’s mental illness delivery and financing system”—more taxpayers’ dollars going into the biomedical approach to treating people’s problems. Dr. Post was Unit and Section Chief and then Chief of Biological Psychiatry at NIMH, a group that “won” research awards from NARSAD and NDMDA. He organized the Stanley Foundation Bipolar Network (1995-2002), now continuing as the Bipolar Collaborative Network that aims to increase studies in bipolar—and with his biological psychiatry background, most likely drug “solutions.” He has served on speakers’ bureaus for Bristol-Myers Squibb and GSK and as a consultant for Abbott Labs, AstraZeneca, GSK, Janssen, Novartis, Pfizer and UCB Pharma and Shire.
- The NRI recommends psychiatric drugs under Medicaid “be available without restriction for persons with mental illness include:
- “Antipsychotic” medications;
- Anticonvulsant medications;
- “Antidepressant” medications;
- “Antianxiety” (tranquilizer/sleeping pill) medications; and
- Any other medication that is cross-indicated as a central nervous system drug recognized to treat mental illness.”
- This is further Driving Up Healthcare Costs, as psychiatric drugs are among Medicaid’s most costly and commonly prescribed drugs.
- In 1996, NAMI set up the “NAMI-Anti-Stigma Foundation” with Laurie Flynn as a Board Member and said its campaign to end discrimination “accepts unrestricted contributions from pharmaceutical companies and others.”While it claims an altruistic motive of dispelling stigma against and stereotyping of mental illness, it has a near neo-Nazi approach in reporting anyone the group considers opposed to its agenda. Not even Halloween escapes them as the group scare heads a campaign against ghoulish “insane asylums” being a theme of the night—although many patients in these asylums would argue it is like a “Halloween nightmare” being locked up and treated in one.
- In 1996, NAMI started a five-year campaign marketed as “Campaign to End Discrimination” that pushed for insurers to pay out unlimited funds for psychiatric treatments. “The “Founding Sponsors” of this campaign were eight pharmaceutical companies that manufacture psychiatric drugs—Pfizer, Abbott Labs, Bristol-Myers Squibb Company, Eli Lilly, Janssen, Novartis, SmithKline Beecham, Wyeth-Ayerst Labs.
- 1997:NAMI formed the “Treatment Advocacy Center” with Dr. E. Fuller Torrey and Laurie Flynn as Board Members. Torrey was a NIMH researcher and between 1987 and 1991 had received more than $780,000 in grant awards from NIMH for research on “schizophrenia.” He is the chairperson of the Stanley Foundation “Research Program on Serious Mental Illness.” The NAMI Research Institute oversees at least one Stanley Foundation program, “The Stanley Scholars program” and supplies money to 29 psychiatric research centers at Universities in the U.S. and Canada. According to Torrey, the Stanley Foundation has been supporting psychiatric research since 1988 and “provides a NAMI staff person to evaluate and oversee NIMH research efforts.”
- On April 18, 1997, NAMI commended Janssen for its “Person-to-Person” initiative—a program Janssen and the APA launched “to link people who use Risperdal for schizophrenia to an array of community support systems.”
- December 1997:NAMI touted the benefits of the “new generation of atypical antipsychotic drug therapies,” quoting psychiatrist Jeffrey A. Lieberman, who receives funding from makers of antipsychotics. NAMI’s press release stated: “An additional benefit of atypical antipsychotics is increased patient compliance due to a decrease in potential side effects and severity of subsequent episodes.” And in light of the revolutionary new drugs, NAMI was quick to reiterate is policy that there should be no limitations on their availability—a “philosophy,” it says is supported by the APA.
- 1998:Eli Lilly (of Prozac infamy) invented the “Welcome Back Award” to “fight the stigma associated with depression and promote understanding that it is treatable” [with Prozac and other antidepressants.] In 2004, Lilly awarded this to the Consumer Services Director of NAMI-DE (NAMI-Delaware), for serving the “depression community.” Winners will share a total of $55,000–$15,000 each—to be donated to the not-for-profit organizations of their choice.
- 1998:NAMI released its “PACT Model of Community-Based Treatment for Persons with Severe and Persistent Mental Illnesses: A Manual for PACT Start-Up” as part of its Anti-Stigma Foundation. The PACT manual and standards outline what NAMI considers to be the most effective treatment—drugs—with the plan to get it implemented by every state by 2002. Part of this is the Assertive Community Treatment (ACT) that includes patients being forced to take psychiatric drugs in the community and increases psychiatrists’ powers to force and coerce patients in taking drugs made by those companies funding NAMI. The program endorses greater involuntary commitment powers for psychiatrists.
- Patricia Spindel and Jo Anne Nugent of Humber College of Applied Arts and Technology who researched PACT also voiced concerns about its stigmatizing effects by trampling on patients’ rights: “The PACT model would seem to be a throwback to a time when the rights of those being ‘treated’ were not of much concern to mental health practitioners.” Further, “The emphasis placed upon medication management and ‘managing difficult clients’ points to a process which stigmatizes and labels people for not following the wishes of society in general, and their doctors and workers in particular….”
- A February 8, 2001 article about the dangers of the PACT program published on the website of the Sutherland Institute—a Public Policy Research Institute based in Utah noted that based on these PACT standards, admission criteria included “significant functional impairments” such as “inability to be consistently employed at a self-sustaining level or inability to consistently carry out the homemaker role (e.g. household meal preparation, washing clothes, budgeting, or child-care tasks and responsibilities.” Further, “Lack of good personal hygiene, not obtaining medical care, and not meeting one’s nutritional needs are other indicators that a person might need PACT’s services. If one in 15 people are in need of care, a lot of bad housekeepers could find themselves subject to involuntary psychiatric treatment, which can include the administration of psychotropic medication.”
- And showing NAMI’s further hypocrisy about stigma, “PACT standards do not require that a patient’s consent be obtained before he is admitted to the program,” with calls from NAMI to loosen existing involuntary commitment laws to enforce treatment. Yet no medical patient could be stigmatized in the same way and be forced to undergo medical treatment. As the Sutherland Institute pointed out, “Loosening the standard for involuntary commitment would allow PACT to treat patients presenting a marginal danger to themselves or others and would open the door to involuntarily treat people, who like the bad housekeeper, merely differ from society’s accepted norm. …”
- A review of 27 clinical trials on PACT programs done by Tomi Gomory, Ph.D. in 1999 found, “The current promotion of PACT appears to be based more on professional enthusiasm for the medical model than upon any benefit to the clients.” A negative effect of the PACT model found in Dr. Gomory’s review was an increased incidence of suicide in PACT settings. One study found that during an 8-month period in one hospital doing the program 10% of the PACT client group attempted suicide while none of the other group of patients had done so (Hoult, et al. 1983). Another study noted that several PACT patients were judged improved by PACT experts immediately before they committed suicide.
- Sarah Thompson, M.D., a policy specialist, authored another article for the Sutherland Institute on PACT stated, “Once a precedent is created for incarcerating and drugging people for minor deviations from ‘normal’ thoughts and behavior, how far are we from creating a system such as that used by the former Soviet Union, where people were incarcerated and drugged for politically incorrect beliefs?”
- 1999:Laurie Flynn, director of NAMI worked on the “Expert Consensus Guideline Series: Treatment of Schizophrenia 1999” to establish uniform “medication guidelines” for schizophrenia. Pharmaceutical companies involved in the development of TMAP generously funded the development of the guidelines.
- 2002: NAMI’s “Living With Schizophrenia & Other Mental Illnesses”educational program was renamed “In Our Voice: Living With Mental Illnesses.” Funded by a grant from Eli Lilly, the program was implemented into 10 states. The “program also serves as a gateway to other NAMI programs, including the organization’s 12-week Family-to-Family curriculum.”
- Other campaigns were NAMI C.A.R.E. (Consumers Advocating Recovery through Empowerment), NAMI Provider Education Program, NAMI Family-to-Family Education Program, (as of 2003 in 45 states and the District of Columbia), Peer to Peer, and Hearts and Minds.NAMI C.A.R.E. announced it would significantly expand due to “an exclusive multi-year partnership with AstraZeneca, LP.” “We look forward to enhancing an already successful partnership with AstraZeneca through the expansion of NAMI-C.A.R.E,” said Suzanne Vogel-Scibilia, M.D., president of the NAMI national board.
- October 2002:The catch-sounding “Campaign for the Mind of America” pushed for an all-out mental health screening of all ages, stating: “The Campaign highlights the need to build a comprehensive, efficient system to screen, evaluate, diagnose and treat mental illnesses at every stage of life.” [Emphasis added]
- In the third and fourth quarters of 2008, Pfizer gave NAMI a grant of $357,000 for “Campaign for the Mind of America.” Marketingis also funding the Campaign for the Mind, with grants of $450,000 in both 2007 and 2008. Lilly also provides extra funding to NAMI groups all over the country for the “Walk for the Mind of America.” In 2007, walking money totaled $41,500 and in 2008, $50,000. 
- In 2007, NAMI presented a $50,000 “Mind of America Scientific Research Award” to Dr. A John Rush who was under Senate investigation for his failure to disclose drug company dollars he’d taken as a researcher. 
- November 2007:NAMI established an online Veterans Resource Center to help support active duty military personnel, veterans and their families facing serious mental illnesses.
On April 6, 2009, Senator Charles Grassley of the Senate Finance Committee sent a letter to NAMI asking for the disclosure of all funding from drug makers and industry created foundations over the past few years.
Sally Zinman of the California Network of Mental Health Clients summarized the primary omission made by most mainstream media when crediting NAMI as a valid source of information on mental illness: “NAMI is seen by the media as the voice of the mental health community, but the integrity of its work is called into question by its sources of funding.”