The appellation of ‘consumer’ of mental health services has come to be used in recent years to describe a fairly diverse interest group. Consumers divide into primary consumers, that is, patients or people in receipt of psychiatric treatment, and secondary consumers, usually meaning the relatives of patients. However, the patients themselves can also be divided into voluntary and involuntary patients. Involuntary patients sometimes complain they are held hostage within the collective description of ‘consumers’ and many former involuntary patients prefer to differentiate themselves by using the title 'psychiatric survivors'.
The importance of relatives as an interest group lies in their closeness to the problems that arise when a person manifests unusual thoughts and beliefs. It is usually the relatives who are the first to know when a family member begins to experience unusual mental phenomena. They are often alarmed at a sudden change in the person and frequently become confused and fearful about the situation—fearful both for themselves and for the person displaying the symptoms. The first inclination of relatives is to seek help and advice, and this is readily available from the medical profession. Relatives usually see themselves as managing a crisis situation, and medical treatment can be highly attractive because it quickly pacifies the person and provides a causal explanation of 'disease', which satisfies normal scrutiny.
In the United States the consumer lobby is well-organised and the National Alliance for the Mentally Ill (NAMI) operates nationally and has more than 210,000 members. NAMI’s enthusiasm for lobbying on behalf of the medical model is encouraged by large donations from drug companies: "The National Alliance for the Mentally Ill, which is pushing to have mental health laws rewritten so that people can be involuntarily hospitalised for refusing to take their medications, received nearly $1 million in 1995 from more than 13 drug companies."[11]
Since 1995, NAMI’s drug company funding has increased dramatically and the magazine Mother Jones recently did an exposé.
"According to internal documents obtained by Mother Jones, 18 drug firms gave NAMI a total of $11.72 million between 1996 and mid-1999. These include Janssen ($2.08 million), Novartis ($1.87 million), Pfizer ($1.3 million), Abbott Laboratories ($1.24 million), Wyeth-Ayerst Pharmaceuticals ($658,000), and Bristol-Myers Squibb ($613,505).
NAMI’s leading donor is Eli Lilly and Company, maker of Prozac, which gave $2.87 million during that period. In 1999 alone, Lilly will have delivered $1.1 million in quarterly instalments, with the lion’s share going to help fund NAMI’s ‘Campaign to End Discrimination’ against the mentally ill.
In the case of Lilly, at least, ‘funding’ takes more than one form. Jerry Radke, a Lilly executive, is ‘on loan’ to NAMI, working out of the organization’s headquarters. Flynn explains the cozy-seeming arrangement by saying, ‘[Lilly] pays his salary, but he does not report to them, and he is not involved in meetings we have with [them].’ She characterizes Radke’s role at NAMI as ‘strategic planning.’"[12]
In Australia, an organisation called Schizophrenia Australia was established some years ago to lobby governments and educate the public about the medical-model view of schizophrenia. The organisation also uses an alternative business name, SANE Australia. In 1998 the focus of their campaign was ‘Help for Families’.[13]
Schizophrenia Australia/SANE has a glittering array of entertainment, legal and business celebrities listed as patrons. However, like NAMI, the Australian organisation is largely funded by pharmaceutical companies. Its 1996 ‘Carers Handbook’ states that Schizophrenia Australia’s Community Education Program is ‘proudly supported’ by Janssen Cilag, Sandoz, ICI Pharmaceuticals and Eli Lilly. The drug company logos are all prominently displayed.[14] Successive editions of SANE News, the organisation’s newsletter, carry advertisements stating that ‘SANE News is proudly sponsored by Janssen Cilag—Supporting care of mental illness in the community’.[15] SANE letterheads state that it is sponsored by yet another drug company, Pfizer.
Laurie Flynn, the executive director of NAMI in the United States, summed up what she called the ‘synergy’ between relatives’ support groups and drug companies this way: ‘The drug companies want more and greater markets, and we want access and availability to all scientifically proven treatments. We don’t think drugs are everything, but for the vast majority they are important.’[16]
In both the United States and Australia in recent years organisations purporting to represent the interests of relatives have been in the forefront of campaigns which have successfully persuaded governments to alter mental health legislation so that involuntary commitment and forced drug treatment is made easier. Relatives’ groups often complain that civil liberties protections, which restrict unnecessary and unfair use of involuntary hospitalisation, interfere with the need to incarcerate schizophrenic relatives in times of crisis. But the revelations that these organisations have been funded by drug companies, which are seeking to expand markets, raises an important question: do these organisations only represent the interests of relatives or have they become unwitting front groups for the pharmaceutical industry?
A recent campaign by secondary consumers to modify the involuntary commitment procedures specified in the New South Wales (NSW) Mental Health Act might serve as a useful illustration of campaign tactics.
Next: The Campaign to Extend Involuntary Treatment in NSW
[11] Keith Hoeller, ‘Psychiatric Drugs Harm Children’.
[12] Ken Silverstein, ‘Prozac.org: an influential mental health nonprofit finds its “grassroots” watered by pharmaceutical millions’.
[13] Anne Deveson, ‘Help for Families’, p. 5.
[14] SANE Australia, Carers Handbook, p. 26.
[15] See for example, SANE News, Issue 9, Spring 1998, p. 8.
[16] Silverstein, op. cit.