Public Perceptions, Public Policies
This short chapter summarizes some of the key discussions concerning how drug abuse is viewed in the society and the implications of those views. These discussions occurred throughout the committee's deliberations, but received special attention at the committee's March 1996 workshop (Appendix A; see also Appendix I).
Although there have been many scientific advances in knowledge of drug addiction, the public's perceptions and understanding lag far behind (see time line in Appendix E). If the goal is to increase interest in and support for careers in addiction research, it is essential to communicate current scientific knowledge effectively to the public at large. Educating the public begins in schools and is carried further through the media and other mechanisms.
Even after years of public statements that drug addiction is a disease, many continue to subscribe to a moralistic view of addiction (Miller, 1991) and to see addicted people as immoral, weak-willed, or as having a character defect requiring punishment or incarceration. This stigma may serve a useful function to the extent that it may discourage some individuals from starting to use these drugs. However,
stigmatizing any disease keeps some afflicted individuals from getting help for themselves and often prevents family, friends, and employers from knowledging the existence of a problem and urging a loved one or colleague to seek treatment.
The stereotype that drug abusers could change their behavior if they were sufficiently motivated is inconsistent with understanding the complex multiple factors involved in addiction. When policymakers view drug abusers as untreatable or undeserving of public support, treatment programs, insurance coverage, and research and training programs may be underfunded or abolished.
Undervalued Area of Research
The stigma associated with drug addiction has directly deterred young investigators who might otherwise be interested in pursuing careers in addiction research and treatment. Their frustration was expressed forcefully and consistently at the March 1996 workshop. For example, one of the new investigators in attendance said, "The biggest problem specific to drug abuse is one of public perceptions. Many times in my career, I have been asked by people outside science, 'Why are you studying drug abuse? Why don't you study something important like cancer?'"
In addition to the discouraging words of friends, families, and colleagues, addiction researchers described concrete reminders of the low status of their field. One new investigator described the "rusting trailer" where their research offices were located; another described how addicted patients were relegated to outbuildings because they were considered undesirable and not wanted in the main medical facility.
As a result of stigma, the realities of studying often difficult and sometimes frightening patients, and the lack of public funding and support, addiction research is often an undervalued area of inquiry with low visibility, and many scientists and clinicians choose other disciplines in which to develop their careers (IOM, 1995). In addition, many believe the field suffers from a lack of prestige stemming from what is seen as a lower quality of some of the research. These perceptions stem from several factors, including a lack of understanding about the complexities arising from multiple determinants of addiction, the difficulties involved in conducting clinical and behavioral research in this field, and other research issues, such as the regulation of drugs and confidentiality requirements (IOM, 1995, 1996). Investigators in drug abuse research are often paid less than their peers in other fields (IOM, 1995).
In considering the importance of advocacy groups to growth of other fields, the role of anti-tobacco groups, treatment providers' groups, and others that advocate better drug and alcohol abuse prevention and treatment should not be underestimated. Yet, unlike other fields in which patient groups provide a strong voice for research, there is very little heard from people who suffer from addictive disorders, particularly if illicit drugs are involved, and a certain hesitancy on the part of families to speak out because of stigma.
The National Alliance of Methadone Advocates (NAMA) is one advocacy organization that encompasses methadone maintenance patients, health care professionals, and other supporters of high-quality methadone maintenance treatment. NAMA's goals are to eliminate discrimination against methadone patients, create a more positive image about methadone maintenance treatment, help preserve patients' dignity and their rights, make treatment available on demand to every person who needs it, and empower methadone patients with a strong public voice (NAMA, 1996). NAMA is one organization composed of individuals with addiction problems and their supporters that provides a working example of how those most affected by addiction can become advocates for themselves.
The willingness to expose oneself to public scrutiny is a critical part of the formation of strong advocacy groups. The willingness to "go public" and organize is severely inhibited by the stigma resulting from the behavior changes induced by intoxicating drugs, the assumption of willful self-destruction associated with drug abuse, and the public perception of addicts as disreputable and hopeless. Further, for those addicted to drugs that are illegal, there are both real and perceived dangers in becoming involved in an advocacy organization that could bring one to the attention of law enforcement officials.
Celebrities often provide important visibility and access for an advocacy agenda, such as AIDS and spinal cord injuries. Although some high-profile persons, including Betty Ford and Carroll O'Connor, have spoken out about addiction and worked to increase public understanding, openness from a variety of celebrities about these problems and how they affect individuals and families will be a continuing need and potent force for changing public attitudes.
Many disease-oriented advocacy groups are able to mobilize behind the hope for a vaccine or a cure, even though research tends to produce only small, incremental improvements in the management of a chronic disease. Because many people see addiction as a defect of will, it is often difficult for advocates to rally behind a "race for the cure" or vaccine.
One difficult problem is that other advocacy groups with similar interests have refused to align themselves with the field of drug addiction. For example, the dual diagnosis of drug dependence and depression is quite common, but advocacy groups for depression are reluctant to form coalitions with advocates supporting
treatment and research for persons with addictive diseases. Instead, these groups often end up competing for research and treatment dollars.
A MODEL FOR UNDERSTANDING THE EDUCATIONAL AND PUBLIC BARRIERS
The committee examined the relationships among the barriers to determine their effect on the field of addiction research. A model showing the relationships among the individual barriers is depicted in Figure 8.1. The figure illustrates, for example, the connection between negative perceptions and advocacy efforts; it shows that stigma can ultimately influence research integration and collaboration. Finally, the figure identifies the barriers and their relationships, which in turn provides a basis for articulating the strategies necessary to overcome those barriers.
Inadequacies in education about addictive drugs and addiction and the pervasive stigma attached to those involved in careers in addiction research as well as those who have problems of abuse and addiction pose serious barriers for careers in addiction research and treatment. The lack of opportunities for integrative and collaborative research, the inadequacy of training and education opportunities, and limited funding levels are also significant barriers. The committee has identified these barriers and strategies to overcome them based on members' own judgment, information gleaned from the workshop, and additional information acquired in the course of this study.
Informing the Public
New approaches should be adopted to help the public in general and educators and policymakers in particular to better understand the neurobiological and behavioral basis of addiction and the effectiveness of treatment. These approaches should focus on providing a basic vocabulary and a basic level of understanding about brain reward circuitry and the behavioral systems that are relevant to the actions of addictive drugs and treatment strategies.
Toward this end, the committee recommends that:
Public education campaigns should be based on an interdisciplinary view of addiction and emphasize treatment effectiveness, as well as include descriptions of the role of brain physiology and function (e.g., pain systems, anxiety circuits, mood systems, and behavioral and psychosocial aspects).
A goal of the campaign could be to redefine drug addiction as a preventable and treatable brain disease influenced by a complex set of behaviors that may be the result of genetic, biological, psychosocial, and environmental interactions, and to emphasize the ways drugs can fundamentally alter neural or brain function. A key to increased understanding of the kinds of changes associated with repeated drug use may be the concept that these drugs can capture control of brain mechanisms that control motivations and emotions (i.e., basic drives, such as anger, fear, anxiety, pain, and depression). Information should focus on the idea that drugs can interact with systems regulating these basic drive states through effects on receptors in the brain and neural circuitry (Chapter 3).
Although the public's views cannot be changed overnight, educational efforts should provide the public with the basis for appreciating that drugs which act on basic brain mechanisms are not inherently ''good" or "bad" but can lead to fundamental alterations in neural or brain function when used inappropriately. In addition, information should be provided to help the public understand that inappropriate drug use can deregulate or disrupt the normal functions of brain systems. This deregulation can be long-lasting; even well after drug use stops, various environmental and emotional triggers can bring about powerful urges to reintroduce drug use (i.e., craving).
In addition, school- or community-based health education programs should be encouraged to address the issues of drug addiction (described above). They should be addressed at appropriate age levels in schools, particularly those with health education and prevention programs.
A campaign for addiction education should include Ad Council initiatives, private and public funding of efforts to develop educational programs for schools or community-based and adult education programs, educational computer programs, and public television and other media communications. In particular, science writers should be educated through press conferences and public symposia.
The Role of Advocacy Groups
Advocacy groups have been particularly effective in generating support for health research and in helping to set research agendas. For example, the stigma
associated with alcoholism has seriously decreased over the past 50 years in large part as a result of the strong voices and openness of people suffering from alcoholism and their families. The committee believes it is essential to engage more recovered people and their families in the strengthening and formation of organizations that could form a national advocacy network for addiction research.
The families of nicotine, alcohol, and illegal drug users could expand their efforts to build stronger advocacy groups to help destigmatize addictive disease. It may prove wise to begin with families of individuals addicted to legal drugs, because these are more acceptable to the public, and then enlist individuals whose relatives abuse illegal drugs. In advocacy, it is important to emphasize what works and why and to link research and treatment to other areas, such as mental health. And to be effective, messages need to be consistent in definitions and vocabulary and presented in lay terms.
Advocacy can be assisted by private foundations, industry, universities, and other professional organizations as well as physicians and scientists in leadership roles. They can translate research findings and new clinical developments for existing advocacy groups and community leaders, and emphasize the importance of a strong research infrastructure.
Specific strategies to increase public understanding and reduce stigma should include:
Increasing communications with the media to report accurate, reliable, and timely information about research findings to the widest spectrum of government and industry officials and to the broader public;
Disseminating scientific information to increase the public's awareness of the neurobiological and behavioral underpinnings of addictive disease, the value of treatment, and the importance of research;
Forging an alliance between local citizens' groups and scientists to conduct local symposia at which the public can hear presentations by scientists;
Strengthening existing grassroots organizations and organizing new groups;
Seeking funding for science writers;
Aggressively seeking increased support for research on nicotine, alcohol, and illegal drugs;
Increasing the focus on addiction research within existing organizations that advocate on behalf of addiction treatment and services; and
Identifying and seeking involvement by high-profile individuals affected by addiction to discuss the scientific basis of the treatment of addictive disorders and the need for new research.
To address these challenges, the committee recommends:
Consumer and other advocacy groups should be encouraged to strengthen their focus on the need for research on the causes, prevention, and treatment of addictive disorders.
Liaison relationships and joint activities should be explored among advocacy groups to increase public understanding of addictive disorders. Activities could include meetings of representatives of provider groups, state and local health departments, and established grassroots advocacy groups, to develop cohesive, workable strategies to accomplish change.
IOM (Institute of Medicine). 1995. The Development of Medications for the Treatment of Opiate and Cocaine Addictions. Washington, DC: National Academy Press.
IOM. 1996. Pathways of Addiction: Opportunities in Drug Abuse Research . Washington, DC: National Academy Press.
Miller NS. 1991. Drug and alcohol addiction as a disease. In: Miller NS, ed. Comprehensive Handbook of Drug and Alcohol Addiction. New York: Marcel Dekker, Inc. Pp. 295–309.
NAMA (National Alliance of Methadone Advocates). 1996. Factsheet [http://www.nama.org]. October.