There are many opportunities for collaboration between advocacy groups and pharmaceutical companies. However, three of the most common types of alliances involve pharmaceutical company support of advocacy group:

• convention presentations
• lobbying efforts to change policies
• collaborative programs with mental health care team members

NAMI’s presentation on Access to Medications at the NAMI 2001 Convention demonstrates how pharmaceutical companies can support the lobbying efforts of advocacy groups to change policies regarding mental illness. This presentation, which reviewed the advantages of atypical antipsychotics and discussed various fiscal and policy issues that can impact access to medications, was strongly supported by the pharmaceutical industry. Similarly, the NMHA has received support for policy statements on the dangers of restricting access to atypical antipsychotic agents Finallyother opportunities for support may arise when physicians and other mental health team members want to develop an educational program in their community. Advocacy groups are often interested in participating in such efforts, and they may receive pharmaceutical company support for such programs.

Local Advocacy Groups and Building Credibility in the Physician’s Office

As with advocacy groups, mental health care providers are not in the business of selling medications. Thus, the strength of your relationship with physicians may depend on the degree to which you are genuinely interested in the patient, rather than in selling medications. One way to establish your credibility with health care providers is through your knowledge of local advocacy groups. Understanding and displaying an interest in the objectives of advocacy groups will increase your credibility with physicians because advocacy groups are interested in patients’ overall needs.

On the other hand, keep in mind that blind acceptance of an advocacy group’s views can backfire because physicians usually do not embrace all of an advocacy group’s initiatives. For example, while an advocacy group may oppose managed care tactics that limit the physician’s decision-making abilities, it may also favor direct-to-consumer advertising, which many physicians do not like. nother area of communication that can impact your credibility relates to the terms used when referring to people with mental illness. Psychiatrists, having gone through years of medical training, are strongly focused on the doctor-patient relationship and hence usually prefer the term “patient.” Social workers, in contrast, often prefer the term “client.” Neglecting to use the preferred term with either professional may not be technically wrong, but it could be perceived as insensitive and lower your credibility.

Since the emergence of the advocacy movement in the 1980s, the pharmaceutical industry has worked to partner with advocacy groups by funding a variety of activities. Thanks to these ongoing relationships, pharmaceutical companies have played an important role in helping people with a variety of mental disorders.

Given the mutual benefits that can develop from advocacy group and pharmaceutical industry alliances, it is important to understand some of the factors that can positively or negatively affect such collaborations. For example, an advocacy group may have a favorable attitude toward such alliances if:

• it has previously had a good relationship with pharmaceutical companies
• the pharmaceutical company supports the group’s advocacy efforts to access medications
• the pharmaceutical company distributes educational material that patients find useful

Advocacy Groups and the Mental Health Market

Although advocacy groups receive support in various forms from pharmaceutical companies, they do not formally endorse specific medications. They can, however, lobby to have a medication funded by the government, as was the case with clozapine (Clozaril®; Novartis). During the past two decades, advocacy organizations have had widespread impact on the mental health market, not only based on their relationships with health care providers, patients, and legislators, but through the formation of alliances with a variety of market influencers.

Some of the groups and organizations that can influence the market and with whom advocacy groups have formed alliances include:

• Research institutes, such as the National Institute for Mental Health (NIMH) and the National Alliance for Research on Schizophrenia and Depression (NARSAD)
• Guild organizations, such as the American Psychiatric Association
• Commercial websites, such as Medscape
• Federal, state, and local legislative bodies
• Pharmaceutical companies
• Eeducational systems
• Employers
• Housing and social services
• The criminal justice system

Apart from interactions with these organizations, advocacy groups can also influence the mental health marketplace by:

• demanding responsiveness from the provider community to use, or stop using, specific treatments
• educating patients on how to communicate effectively with their therapists about interests or concerns
• educating patients about the importance of treatment compliance
• performing legislative advocacy work to change public policy

All of these areas of influence underscore the importance of partnering with advocacy groups. Forming such relationships is not only beneficial to promoting aripiprazole —advocacy groups will be interested in learning about new therapies — but also because partnering can foster additional relationships and opportunities (e.g., with physicians and other mental health care workers).

Advocacy groups can also impact the market by promoting “best practices” — that is, by spreading awareness of the views held by thought leaders on state-of-the-art approaches to treating mental disorders. For example, NAMI took an active position before Congress to curtail harmful restraint and seclusion practices, a position that gained support from many who had previously turned their back on mental illnesses because of the associated stigma.

In addition, both NAMI and NMHA have supported the schizophrenia Patient Outcomes Research Team (PORT) Treatment Recommendations. These recommendations were based on an exhaustive review of current scientific evidence documenting the most effective treatments for alleviating schizophrenia symptoms and improving recovery. The 5-year study, involving a team of more than fifteen scientists from three major researcher centers, was funded by the National Institute of Mental Health and the Agency for Health Care Policy and Research. The resulting recommendations were the first science-based guidelines for schizophrenia treatment.

In producing the PORT recommendations, researchers organized thirty possible treatments for schizophrenia into seven categories of intervention:

• antipsychotic medications
• additional medications for depression, anxiety, or hostility
• electroconvulsive therapy
• psychological treatments
• family interventions
• vocational rehabilitation
• assertive community treatment

Although the researchers found that many providers are not following these recommendations, advocacy groups have been rallying behind the report to promote a “best practices” approach to treating schizophrenia. Their supportive work, along with related attempts to promote recognition of illnesses, illustrate the powerful impact that advocacy groups can have on the health care market.

The advocacy movement has provided a mechanism for promoting cooperation, affirmation, and inspiration among patients and families of virtually all cultures and communities. For example, 10 years ago, pertinent information regarding side effects of antipsychotic medications was virtually unknown. Today, the brochure “Facts About Tardive Dyskinesia,” written and distributed by advocacy groups, is often given to people diagnosed with schizophrenia. Such educational efforts not only help reassure patients, but strengthen their therapeutic alliance with clinicians.

Because serious mental disorders such as schizophrenia can be alienating, the importance of advocacy cannot be overemphasized. For example, one patient wrote the following:

“Social isolation has to be one of the worst experiences of schizophrenia. People with schizophrenia can have no friends, no spouse, and sometimes no family. Two-thirds of patients with schizophrenia return to their parent’s house after discharge from a hospital the first time. Family members generally receive very little education about what to expect. They may not even know the importance of medication compliance.”

In addition to providing basic information about mental illness and treatment, educational efforts by advocacy groups have profoundly impacted the lives of patients and families by de-stigmatizing and demystifying mental illness, promoting a heightened sensitivity among the public, and fostering patient empowerment among those affected with mental illness. Finally, advocacy groups impact the lives of patients and their families every day through both large- and small-scale efforts, from lobbying at a national and local level to change policy, to such daily grassroots efforts as posting employment opportunities and organizing community programs.

Some former and current patients with mental disorders, frustrated by their personal experiences with the mental health system, refer to themselves as “survivors” rather than consumers. Because they feel disenfranchised from the mainstream culture, they support more radical beliefs and do not agree with the views of psychiatrists or advocacy groups. Survivor groups include the European Network of Ex-Users and Survivors of Psychiatry, the 12-Step Coercion Watch, the Campaign Against Psychiatric Oppression (CAPO), and Survivors Speak Out. Another survivor organization, the Antipsychiatry Coalition, is a nonprofit volunteer group that warns of “the harm routinely inflicted on those who receive psychiatric treatment.” This group questions whether psychiatric “diseases” should even be considered medical disorders and believe that psychiatric medications and psychotherapy are unnecessary and were ultimately created to feed an industry.

Although survivor movements often represent extreme views that run counter to scientific evidence, they should not necessarily be dismissed. For example, modern medicine cannot claim to fully understand the nature and cause of psychiatric illness. Despite many extraordinary medical and scientific gains in the past few decades, the causes and classifications of many mental disorders and even the exact mechanisms by which many medications work — are not yet well understood. Finally, it is important to recognize that many individuals in these movements have had genuinely traumatic experiences, often due to shortcomings in the field of psychiatry.