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Chemical Dependency Research Working Group

XIII
Conclusion and Discussion

During the course of this investigation, historical and social data were obtained as background to validate the assumption that methadone patients are a stigmatized group. The historical material showed that there has been an accretion of stigma directed towards opiate dependent people over the past two centuries. This development began with a moral religious fervor during the nineteenth century that argued against the taking of opiates. Opiate addiction was seen as a 'vice' or an extension of the concept of moral insanity that incorporated religious ideas of morality with the emerging science of psychology in 19th century England. Moral insanity, the religious and value laden concept was then transformed and objectified into the scientific concept of psychopathic personality in German 19th century psychology. Psychopathic personality became a basis for classifying a troubling set of behaviors, that were not clearly explained within existing parameters of knowledge, but which clearly conflicted with accepted social mores, consciousness and behavior. Moral insanity and psychopathic personality inferred there were no 'moral brakes' or conscience to deter aberrant behavior. Thus the little understood compulsive behavior of addiction became linked to a concept that was defined, codified and scientifically accepted, namely the psychopathic personality.

With racial fears coupled with the potentially revolutionary movements of a white underclass, the stigmatization of addicts became an underlying current in the formation of theories. Theories of addiction evolved from a mixture of values and beliefs, observed behavior, the extent of knowledge and the class of persons who were afflicted. Thus theories of addiction change as the era changes, incorporating the contemporaneous disciplines and perceptions of a given era. Nevertheless, contradictions exist in the formation of theories that incorporate an undercurrent of social and ethnic class formations. Persons from various economic, social and ethnic groups have become addicted in every era, although certain groups at any given time may predominate. Nevertheless, the outward parameters of addiction persists: irrespective of class, historical era or ethnic background, opiate dependency for many who were affected is a chronic relapsing condition. Tolerance, the primary and secondary abstinence syndromes, the specific narcotic craving or hunger leading to relapse are the common elements of opiate addiction that transcend cultural factors which shape the outward expression of addictive behavior.

The historical section of this study traced the emergence of addicted risk groups and the development of theories in different historical eras. In each era, there was an accretion of stigma as the risk populations were transformed and new theories emerged -- an upper class vice or pathetic condition in the 19th century to a psychopathic character disorder describing the poor ethnic and minority addicts in the 20th century. Thus, the development of modern stigma against opiate dependency was rooted in the social history of the last century.

After the passage of the Harrison Narcotic Act in 1914 the stigma became institutionalized at the federal and local levels with the backing and encouragement of the federal governments Bureau of Narcotics (Gewirtz, 1969). Drug addicts especially those from minorities, immigrant and the lower economic classes became a deviant group replete with criminal sanctions, stigmatization and legal control at every level of government. This stigmatization and criminalization extended to sympathetic physicians who continued prescribing narcotics.

The second part of this study introduces the medication methadone and the work of Dole, Nyswander, Kreek and other investigators. Included in this investigation is a review of the major medical, epidemiological and follow-up studies that show that methadone maintenance to be an effective medication to treat chronic opiate dependency. However, irrespective of good science, this study validates the transfer of stigma from heroin addiction to methadone maintenance, led by the Bureau of Narcotics and its successor the DEA and followed by academia, the media, other researchers, physicians, adherents of drug free orientations to treat addiction and finally the community. The scientific reviews in this study refute the mythologies and the stigmatization that have emerged against the program, the medication and the patients. The stigma that methadone patients feel is a real phenomenon and in comparison with other social stigmas appears to be entrenched in the collective social consciousness of the country at every level of society.

In a speech delivered at a meeting sponsored by the Albert Einstein College of Medicine on November 4, 1994, Dr. Alan Leschner, the director of NIDA, stated that stigma was the greatest problem facing the delivery of services to addicts, especially methadone treatment. Leschner is of the opinion that addiction is a disease of the brain expressed in a social context that shapes the behavior of the affected individual. With the emergence of advanced neuroscientific research, biological factors are now being included in theories about addiction. These theories maintain that independent of the personality, an individual can become addicted to opiates: therefore methadone maintenance for some patients may be indefinite. For most patients methadone maintenance is a corrective, not a curative procedure. According to Leschner, the inclusion of metabolic and neurological factors in the theories lessen the stigma of methadone treatment previously associated with theories that focussed on psychopathic personalities and character disorders as the major points of conceptualization.

There are crucial unanswered questions that should be researched. Is chronic addiction symptomatic of a permanent or transient deranged neurological and physiological phenomenon? Why can some persons remain abstinent after a period of methadone treatment while others relapse? What is the role of the bioneurological mechanisms - the opiate receptor system and the endogenous ligands - in opiate addiction?

This study then focuses on a group of highly functional patients who are being treated by physicians in hospital-based medical practices in the specialty of internal medicine. The patients are employed either in good paying jobs or are owners of businesses. For the most part, they are married with families living within the middle and upper middle class. However, the concealment of their enrollment in methadone maintenance treatment is a major factor in their lives. Methadone treatment for this group is not substituting one addiction for another but as Goffman indicated in the case of the stigmatized person, an attempt to correct his condition, or in the case of methadone patients to correct their addictions. The central concern of the discreditable person with a stigma is acceptance. Methadone treatment permits social acceptance since it essentially eliminates the outward signs of addiction. The methadone patients in this study are free to interact with normals without telltale signs of addiction. Their stigma was corrected and hidden. Old scars lightened or disappeared or could be covered with clothing. The hard working, high achieving methadone patient belies the character disorder and weak willed heroin addict. However, in a social sense methadone treatment, is an in-between status. Methadone patients in this study regard methadone treatment as legitimate medical treatment, while professionals and society-at-large regard methadone treatment as substituting one addiction for another - still a stigmatized condition with a patina or shadow of the psychopathic characteristics of heroin addiction.

Both the patients and the four physicians in medical maintenance are cognizant about biases against methadone patients and the widespread ignorance about methadone maintenance that exists in the medical profession. The physicians have intervened for their patients by explaining the procedure to other health professionals who may be treating their patients. Never in the history of medicine has a therapy been so thoroughly evaluated as methadone maintenance for effectiveness and safety and yet subjected to such distortion, stigmatization and regulation. The stigmatization has become so entrenched that it figuratively extends through the patient to the molecules of methadone itself.

The plight of socially rehabilitated, employed methadone patients fits into a classic conceptualization of stigma as described by Goffman (1963). Patients have two separate social identifies:

• Virtual Identity. This is the identity that patients present to the world and members of their families. The responsible adult who is capable of functioning on a high level within society as a law abiding citizen. Addiction and methadone treatment are not mentioned. The outward picture is of normalcy.



• Actual Identity. This is the hidden identity of the patient who although currently functioning on a high level is burdened with a past of heroin addiction that included illegal activity and in some cases arrests and incarceration. Although currently enrolled in medical maintenance, the patient is afraid of discovery because of the stigma attached to the medication, the program and the past. Furthermore, the older theories of addiction imply a weak will and character disorder. Since methadone treatment is seen by society simply as substituting one addiction for another, the patient fears being seen as a dependent legal drug addict with the unsavory traits associated with heroin addicts.

In Goffmans conceptualization of stigma, methadone patients are examples of persons harboring an invisible stigma. He classifies the stigma as associated in the social consciousness with a blemish of character -- alcoholics, homosexuals, criminals and political radicals. Since the stigma is invisible, the methadone patient is a discreditable but not discredited person.

Social acceptance according to Murphy and Irwin (1992) is dependent on keeping a dirty secret. What makes the stigma even more difficult is the fact that the acquiring of an addiction is regarded as an act of willful behavior as opposed to a stigmatized condition that arouses compassion such as a congenital deformity of the body or the loss of a limb through an accident or being born retarded. Since addiction is perceived as self inflicted, compassion is not forthcoming. The socially rehabilitated patients within this study entered methadone treatment to change their lives and to correct a pathological condition. Instead as previously discussed, the stigma of heroin addiction has been transferred to methadone.

The labelling of methadone patients as methadonians and methadone addicts, vitiates the attempts at normalcy. The highly accomplished group of patients in this study belie the labelling that creates, according to Miller (1974), a state of tertiary deviance. Central to this labelling is the belief that methadone maintenance is not perceived as a legitimate medication for a legitimate medical condition but as a means to obtain a legal high. Miller indicates that methadone treatment is perceived as a rehabilitation without honor. The drug-free orientation of American society and proponents of drug-free programs regard methadone maintenance as substituting one addiction for another.

According to NAMA the stigma attached to methadone treatment is almost as painful, if not more so, than being addicted to heroin. Addicts enter methadone treatment to eliminate the pathological condition of heroin addiction and instead find themselves faced with a new more subtle and even more damaging stigma. The addict has traded the heroin monkey (drug hunger) for the methadone gorilla (social control). Thus, methadone patients remain in limbo between the social 'normals' and the world of the stigmatized heroin addict. Therefore, to be accepted in society on equal terms they must remain silent about their status as patients and their accomplishments while maintained on methadone. In no other field of social service or medical treatment has a procedure shown such potential efficacy only to be nullified by the effects of stigma.

The hypothesis of this study will be reformulated as follows considering the results of this study with 100 socially rehabilitated patients in medical maintenance:

Does the further concealment in medical maintenance because of its individualized medical treatment and reduced reporting schedule:

1. Preserve or enhance the social functioning of socially rehabilitated patients maintained on methadone?



2. Lessen the perception of social stigma of being maintained on methadone?

The answer to part 1 of the hypothesis is:

1. An unqualified yes for 77 patients, of whom 67 are still in the program and 10 medically withdrawn from methadone in good standing. With the removal of procedures, regulations and controls that many found demeaning and restricting in the clinics, they developed positive trustful relationships with their physicians. Many took advantage of the freedom that medical maintenance offered by creating and expanding their businesses, attending college, graduate and professional school, improving their employment skills and, in one case, building an international career in the arts which would been impossible in the clinic system.



2. A qualified yes for the seven patients who died and the one patient who returned voluntarily to the clinic of origin. The seven patients who died from medical causes were all patients in good standing. The qualification is that their continued good adjustments were affected either by prolonged illnesses leading to death or sudden medical deaths. For those who became terminally ill during treatment, medical maintenance offered a team approach to their care. Their medical maintenance physicians oversaw the continued use of methadone and the prescribing of adequate medication for pain. The patient who returned voluntarily to the clinic system was employed and appeared to be making an adequate adjustment until her death from natural causes.



3. An unqualified no for the 15 patients who were discharged with cause. Despite screening, interviews and recommendations from the clinic system, these patients needed the regulations and counselling services of the clinic to maintain their functioning. Some became involved with cocaine/crack and others could not manage a months supply of medication. They were all employed some owning their own businesses when they entered medical maintenance and met the other criteria for acceptance. There do not appear as yet, sensitive screening procedures that could adequately predict success or failure in this particular program.

The answer to part 2 of the hypothesis that medical maintenance lessens the perception of stigma associated with methadone maintenance is an unqualified no. With all of its advantages of concealment and personalized treatment, medical maintenance does not remove or lessen the perception of social stigma of being a methadone patient either among active or former patients who were successfully withdrawn. The perception of stigma persists irrespective of the patients treatment status and extends into the post treatment period for those who were successfully withdrawn from methadone. In general the patients in medical maintenance do not inform employers or friends about their enrollment in a methadone program. Although spouses are usually informed, some patients have not revealed their status as patients to members of their families including parents and children.

Goffman (1963) defines the pathway that stigmatized people choose as a moral career - one that reflects a given set of values common to the group. The patients in this study chose to correct the highly stigmatized condition of heroin addiction by becoming methadone patients within a marginalized clinic system. While in the clinic system, they proved their reliability by conforming to the rules of a highly regulated clinic system, maintaining employment and adopting a life-style free of criminal behavior, use of illicit drugs and excessive alcohol. The multitiered regulations of the clinic system reflect the stereotypes that the public harbor about methadone patients. Although some patients may need the regulations and control of a clinic, the majority do not. For compliant patients the rules and regulations are more controlling than probation or parole.

Medical maintenance is conducted in private - in secrecy before a trusted doctor. However, both doctor and patient must still adhere to regulations whose origins are couched in federal policy for a clinical setting serving patients some of whom may have serious unresolved personal and social problems. A primary function of the regulations is to prevent diversion of methadone. The question arises - Are persons who are employed, own businesses or have celebrated careers going to divert a dose of methadone on a street black market that caters to untreated addicts? Some methadone patients in medical maintenance are earning up to and over $100,000 per year and will not sell their medication on the streets of New York or any other city for an extra $10.00 a dose. However, they are caught in the web of regulations that is intended to control a marginal population -- which denigrates and infantilizes them. Although with medical maintenance travel is more flexible, patients must live in a geographical area where medical maintenance is available. The marginalization of the clinics has been moved into a concealed private practice with a quasi-normalization.

In the clinic the adherence to these regulations for employed complying patients is the moment when the full reality of the stigma is realized. No matter what the patient accomplishes it is those clinical moments - the submitting of random urines and the drinking of a dose of methadone on a line - that may define him/her as a former stereotypical heroin addict: the lying, untrustworthy, weak willed, sociopath who must be forever subjected to control; whose urines must be forever investigated; whose 'career' of a heroin addict although in the past still threatens the 'moral fabric of the greater society.' As one patient explained at a graduation ceremony for counselors in methadone programs, "It doesnt matter who you are outside the clinic. When you are in the clinic you are lowered, as though you are not the person you are on the outside who works or has a family (Finneran, 1994). The clinic process equalizes patients and essentially forces patients to change their identity and self image. Some patients feel bereft of dignity. On that line it does not matter whether they are complying and rebuilding their lives or loitering and destroying their lives, everybody is the same - urines on demand, the return of bottles and the drinking of a dose of medication in front of a nurse. And always suspicion -- for those few minutes, they are subjected before other patients to controlling regulations and the decisions of a staff that have the potential and impact of pervading every aspect of their lives. Arguments about dose are public and in some clinics the submission of urine tests are observed to make sure the patient is not cheating. Everything is geared to controlling the non-compliant not enhancing or rewarding the compliant.

However, in medical maintenance the regulations of control are couched within the context of a doctor-patient relationship -- both must participate in this monthly ritual and it takes on a different contextual meaning. The public line of the clinic has been exchanged for the privacy of the doctors office. The rituals of control have been disguised and transformed into the rituals of private examination. The stigma remains but in the office of the doctor it is smoothed out and deemphasized. It is the tacit agreement of the rules of a team -- the doctor and the methadone patient for credence and support to survive and maintain a moral life. The silent agreement is about the ever present secret, opiate dependency, unseen by the world -- the invisible worm in William Blakes poem, The Sick Rose.

The stigmatization of methadone treatment has resulted in the following major issues:

• Inability to open new programs because of community and political opposition despite the increasing transmission of HIV and drug resistant tuberculosis among untreated heroin addicts.



• Inability to obtain adequate funding for increasing capacity of the clinic system in the United States; only one out seven addicts in the United States is enrolled in methadone treatment.



• Methadone maintenance is illegal in about ten states and, in others, daily doses may be limited by statute or regulation and be inadequate for a substantial number of patients; time limits may be set for the duration of methadone treatment.

Overregulation of clinics at federal, state and local levels; overregulation can result in punitive and overcontrolling policies thereby limiting the functional potential of patients.

Inaccurate and potentially destructive presentations about methadone in the media (e.g., television, newspapers, books, journals, magazines).

Inadequate doses prescribed to patients as a matter of clinic policy or ignorance about methadone maintenance.

Discrimination against patients; patients must develop strategies to conceal their status as patients with their families, friends and employers.

The development of destructive mythologies about methadone treatment (e.g., it rots the bones) among untreated addicts that prevents them from:

• applying for methadone treatment.



• agreeing to take an effective dose of medication.



• remaining in treatment for a reasonable length of time if they should enter.

The development of misinformation about methadone (e.g., methadone patients do not need postsurgical pain medication) among professionals including physicians, nurses, sociologists, psychologists, social workers, etc. that results in poor treatment practices and a fundamental misunderstanding of the patients needs, motivation and behavior. These misunderstandings lead to biases and further stigmatization of the patients and a lack of support for the treatment.

Recommendations

Initially the approach to overcome stigma against methadone patients involves a rethinking of the concept of addiction and treatment. As developed in this study, social and psychological theories of addiction have incorporated the moral and stigmatizing beliefs of a given era. There is an overlay of stigma that is latent in most theories that attempt to explain a prolonged compulsive addictive disorder (e.g., psychopathic personality, weak willed individual, sociopathic behavior). The theory must differentiate between availability of the drugs within a social context, the behavior of the individual within this social context and long term compulsive use. The social and psychological factors concern the availability of the narcotics and experimentation. However, a predisposition to development of long term addiction with its chronic relapsing nature implies the introduction of biological forces irrespective of social and psychological factors that may have led to experimentation.

The following are recommendations that should be considered.

• A reformulation of social and psychological theories of addiction to take into account the discoveries of neuroscience since World War II. Opiate addiction would then be considered a legitimate medical disease with a legitimate method of treatment. The findings of neuroscience may then lessen the stigma associated with methadone treatment.



• The continuing acquisition of a greater knowledge base including neuroscience findings, clinical practice and post treatment outcomes. An evaluation procedure would add to the knowledge base, determine the type of patients that can benefit from medical maintenance and the type of physicians and medical programs that could effectively treat patients who could treat them. Most importantly, a continuous evaluation could identify and prevent unethical or questionable practices among prescribing physicians and programs.



• To impact on current policy a follow-up study that incorporates physical and neurological examinations as well as social and psychological factors. This has implications for the clinics where patients are encouraged to withdraw sometimes within the first two years of treatment or less or policy limits the length of time in treatment. To date the majority of follow-up studies indicate high relapse rates even among patients with a lengthy time in treatment and who are doing well. For the majority of current patients both in medical maintenance and the clinic system, withdrawal from methadone in the foreseeable future may not be a realistic goal.



• The education of physicians and related health care professionals about methadone maintenance that incorporates theoretical questions about the causality of addiction and the implications of discoveries in neuroscience. Clinical knowledge is important for effective practices such as prescribing adequate doses of methadone for maintenance and adequate pain medication if the patient should be hospitalized. However, the theoretical work is important to dispel prejudicial and biased attitudes towards patients. This is of special importance since patients have reported widespread bias within the medical and related health care professions against them.



• Strategies to reduce stigma by modifying existing theoretical concepts and beliefs are needed. One such strategy would be the organizing of an interdisciplinary team of scientists, physicians and patients to write articles for various journals and textbooks concerning the theoretical basis of addiction that embraces the new findings of neuroscience including the problems patients face because of the overregulated clinic system and the prejudice directed at methadone treatment and patients.



• The formation of patient advocacy groups should be encouraged. Patients are now beginning to protest against repressive regulations of clinics, distorted media presentations and the theoretical concepts that add to their stigmatization. NAMA has been formed and now has over twenty-three chapters in fifteen states and five international groups in three countries with a patient membership of about 7,000. This organization and several member organizations publish newsletters about methadone, addiction theory, oppressive regulations and the stigma that is associated with the program. Also, accurate medical information is presented to patients in there newsletters and other publications that include dosage, pregnancies, side effects, medical procedures and HIV infection.



• The formation of patient advisory groups which deal primarily with clinic problems should be encouraged. In contrast to advocacy groups, an advisory group is appointed by clinic staff and patients to serve as their representatives in issues dealing with clinic problems and policy. Also, patients should be included in meetings about regulations and policy at the city and state level. Methadone patients should be encouraged to participate in national and international methadone conferences.



• To improve possibilities of methadone expansion, physicians, administrators, scientists and patients should meet with political and community leaders to develop new programs in communities where the establishment of new programs has been obstructed. The expansion of methadone programs is critical if the HIV epidemic is to be controlled within this population.



• An aggressive campaign should be undertaken with providers and patients working together to educate community planning boards, real estate developers, physicians and public health officials about the efficacy of methadone maintenance treatment. Most importantly, educated and successful methadone patients can help change the public image of methadone treatment from the stigmatized program of just substituting one drug for another to the legitimate medical treatment that saves and transforms lives.



• Medical maintenance should be expanded with a careful evaluation procedure. A network of physicians affiliated with a major hospital should be organized and trained about methadone treatment. Socially rehabilitated methadone patients could then be removed from the clinic system and treated as private patients in medical practice. Health care organizations could also be enlisted for the treatment of methadone patients, thereby expanding treatment in a most cost effective manner. Methadone treatment should also be covered with health insurance.



• Education of staff is essential with ongoing training so that professionals can upgrade their knowledge and skills. This is important to ensure quality methadone treatment and that patients be treated with the dignity and respect they deserve.

Ultimately rigid controls and stigma can further impede the expansion of possibly the most effective treatment devised not only for the treatment of addiction but one of the most effective therapies in the treatment of any chronic condition in the field of medicine. The public health consequences of the stigmatization of methadone treatment are now being seen with the spread of HIV infection and drug resistant tuberculosis among injecting heroin addicts, their sexual partners and children not only in the United States but in Europe. The regulations imposed on this treatment by several interwoven governmental bodies has backfired and has not permitted the expansion of this program or the treatment of patients to proceed in a way that would optimize the advantages of methadone maintenance for the patient and society. While regulations are necessary to prevent diversion and unethical practices, guidelines are also necessary to improve treatment, modify the multitiered regulations and expand treatment. This is beginning to occur with the recent publication of the Treatment Improvement Protocols Series by the Center for Substance Abuse Treatment (CSAT).

This study concludes with the following statement by Dr. Marc Reisinger (1993), editor of AIDS and Drug Addiction in the European Community: Treatment and Mistreatment. Although this statement applies to the European community which has stigmatized and opposed methadone treatment, it is equally applicable to the United States where methadone treatment is overcontrolled and in some localities, forbidden. Heroin addiction as a vector for the transmission of HIV is now becoming a worldwide public health crisis and:

...the supply of methadone is inferior to the demand almost everywhere in Europe. This might be seen one day as an unpardonable error of judgement which will cost the lives of hundreds of thousands of persons and wreak havoc on the health care budgets of several European countries.