This article was downloaded by: [New York University] On: 05 August 2015, At: 12:13 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: 5 Howick Place, London, SW1P 1WG

Journal of Addictive Diseases Publication details, including instructions for authors and subscription information:

Stigma from the Viewpoint of the Patient a


Joycelyn Sue Woods M.A. & Herman Joseph Ph.D. a

National Alliance for Medication Assisted Recovery (New York, NY) and the MARS Project (Bronx, NY) b

National Development and Research, Inc. (New York, NY) Accepted author version posted online: 15 Jun 2015.

Click for updates To cite this article: Joycelyn Sue Woods M.A. & Herman Joseph Ph.D. (2015): Stigma from the Viewpoint of the Patient, Journal of Addictive Diseases, DOI: 10.1080/10550887.2015.1059714 To link to this article:

Disclaimer: This is a version of an unedited manuscript that has been accepted for publication. As a service to authors and researchers we are providing this version of the accepted manuscript (AM). Copyediting, typesetting, and review of the resulting proof will be undertaken on this manuscript before final publication of the Version of Record (VoR). During production and pre-press, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal relate to this version also.

PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://

ACCEPTED MANUSCRIPT Stigma from the Viewpoint of the Patient Joycelyn Sue Woods, M.A. National Alliance for Medication Assisted Recovery (New York, NY) and the MARS Project (Bronx, NY). Herman Joseph, Ph.D. National Development and Research, Inc. (New York, NY).

Downloaded by [New York University] at 12:13 05 August 2015

Contact: Joycelyn Sue Woods [email protected] Running Head: Stigma This manuscript has not been published elsewhere and has not been submitted simultaneously for publication elsewhere. Abstract Stigma has become a primary social force facing patients in methadone and buprenorphine treatment. For quality methadone and buprenorphine treatment to flourish it will be necessary to confront and reduce this negative influence. This paper, co-authored by a patient and professional, discusses stigma and prejudice from the viewpoint of patients. Educational and national strategies using the media and targeted to patients, programs and the general public are discussed. Keywords: stigma, language, criminal justice system, child welfare, medical professionals, housing National Alliance for Medication Assisted Recovery (NAMA-R), Stop Stigma Now



ACCEPTED MANUSCRIPT Introduction Over the past five decades, methadone patients have faced an increasing and pervasive social stigma. This stigma encompasses distorted media reports, major social institutions and every type of relationship down to the prescribed medication to correct the impairments caused by a formerly active opiate addiction. Recent research and articles confirmed that the public

Downloaded by [New York University] at 12:13 05 August 2015

perceives an opioid use disorder as a moral failure and thus does not support funding for medical research or treatment. Furthermore the public supports the loss of civil rights of former addicts and methadone patients to the extent of denying them employment.1

Essential to the spread of stigma is the language that is used by patients, professionals and the public. For example the word substitution infers that methadone has no medical value and blurs its true pharmacological profile by inferring that it has euphoric and sedating effects equal to heroin or illicitly used opiates. Methadone patients are perceived as zombies and even called ―methadonians‖ which further alienates them from the human race. This negative image of methadone patients is opposite the facts and reality. Dr. Francis Gearing conducted the first large study of methadone treatment and reported that methadone was an effective means of returning a heroin addict to a relatively normal life-style; persons on methadone were reported to hold jobs, study, and support their families, including hundreds who did not do so when they were on heroin.2 A review of Dr. Norman Gordon’s work supports that methadone treatment at appropriate dosage levels has little or no effect on a patient’s ability to function in any capacity for which they are qualified.3



ACCEPTED MANUSCRIPT Metabolic theory of Addiction The metabolic theory as developed by Drs. Dole, Nyswander and Kreek states: ―… that the compulsive and quite specific craving for narcotic drugs is a symptom of a deficiency in function of the natural opiate-like substances in the brain. To be sure, sociological and psychological forces enter into the making of an addict, but these factors determine

Downloaded by [New York University] at 12:13 05 August 2015

exposure—whether or not addictive drugs are available in the environment and whether a person chooses to experiment with them. In any person with repeated exposure to a narcotic drug, the brain adapts and becomes pharmacologically dependent on a continuing input. In some susceptible persons----fortunately a minority of the population—the adaptation becomes fixed and with repeated use a regular input of narcotic becomes a necessity. The experimenter has become an addict. From this perspective methadone maintenance is replacement treatment, compensating for impairment in function of natural opiate-like substances.‖4

Dole, Nyswander and Kreek realized that long term use of oral methadone normalized the impairments caused by long term abuse of short act narcotics. Dole used three pharmacological properties to produce an effective medication that enables a patient on methadone to function normally and undetected in society without the euphoria, sedation and compulsive craving of a narcotic. 1) Oral administration 2) Amount of dose 3) Frequency of administration



ACCEPTED MANUSCRIPT The patient feels normal pain, has normal emotions, and therefore is able to function and acquire any skill within the range of employment opportunities 5 (e.g. from physical labor through the professional levels). Narcotic blockage is generated when patients receive over 80 mgs of methadone and 15 to 20 mgs of buprenorphine per day. Patients will not experience euphoria if illicit opiates are used.6 The charge that compliant methadone patients are zombies is refuted by

Downloaded by [New York University] at 12:13 05 August 2015

these carefully constructed studies. Methadone treatment as developed by Dr. Dole is the only treatment for heroin addiction that was evaluated over a period of time by Frances Gearing of the Columbia University School of Public Health. 2 An evaluation of diverse methadone programs by John Ball was also completed. While some programs needed improvements in services and administration to achieve optimal outcomes, overall the patients benefited from the medication itself.7

Forces of Stigma During the past decades the stigmatizing social forces of chronic unemployment and financial dependency, criminal activity, homelessness and minority group status have adversely impacted the perception of methadone patients. During the course of their active addictions patients acquired stigmatizing diseases such as AIDS and hepatitis C. Co-occurring disorders linking histories of substance misuse with mental illness have been increasingly identified especially within the criminal justice system.8 Stigmatizing habits aside from opioid addiction including alcoholism, excessive smoking and, the misuse of non-opioid drugs including cocaine, crack and



ACCEPTED MANUSCRIPT designer drugs which have had a deleterious effect on the health of patients leading to premature deaths.

Notwithstanding the diverse social, personal and medical stigmatizing factors which methadone patients bring into treatment, evaluations have shown lifelong benefits for patients and society.

Downloaded by [New York University] at 12:13 05 August 2015

Zarkin et al suggests from developing a lifetime simulation model of analysis that every dollar invested in methadone treatment yields $38 in economic benefits to society with less crime and greater employment.9 Barnett and Hui conclude from their study that methadone treatment is more cost effective than many widely used medical therapies and should be included in formularies of health plans. 10

NAMA-R (the National Alliance for Medication Assisted Recovery) evolved in 2009 from NAMA (National Alliance of Methadone Advocates) which was organized in 1988 as a reaction to the lack of services for addicts and methadone patients during the AIDS epidemic. NAMA-R became the spokesmen for patients to be included in policy and decisions that would save lives of addicted persons and patients in methadone treatment. NAMA-R met resistance from programs and advocacy groups including the Gay Men’s Health Crisis which supported abstinent oriented 12 step groups instead of methadone which at that time was the only proven evidence based treatment.11



ACCEPTED MANUSCRIPT In addition NAMA-R organized 12 step groups for methadone patients who needed additional supports for resolution of polydrug abuse. In traditional NA/AA groups patients found themselves marginalized, stigmatized and humiliated unable to fully participate as these groups did not accept methadone as an effective or legitimate medication. Patients were treated essentially as on-lookers. Also, patients reported that they were told to withdraw from

Downloaded by [New York University] at 12:13 05 August 2015

methadone if they wanted to be fully accepted. The same type of rejection and stigma was found in the early therapeutic communities. These attitudes are beginning to change as some therapeutic communities are prescribing agonist medications for residents and some groups have begun to accdept methadone pateints. .

Ignorance about the effectiveness of medications to treat opioid use disorder and language that perpetuates stigma result in decisions that can be harmful to defendants before the courts and within the criminal justice system. For example the Nassau County Felony Treatment Court does not allow defendants to enroll or remain in methadone treatment upon threat of incarceration. Judges, probation and parole officers have the power to issue orders to a defendant to taper from methadone or other agonist therapies such as Suboxone without any knowledge of an opioid use disorder or medicine contrary to medical advice and the scientific findings over the past thirty years. These attitudes fused with ignorance and power can result in a lethal situation.



ACCEPTED MANUSCRIPT Robert Lepowski 28 of Farmingdale, New York overdosed in January 2014, after having relapsed because he was forced to taper from methadone. He had entered methadone treatment and was able to abstain from misuse of heroin, obtain a job, reunite with his family and as a result his health and mental outlook improved. However because of a previous offence prior to treatment he was brought before the Nassau County’s Felony Treatment Court in New York

Downloaded by [New York University] at 12:13 05 August 2015

State. The presiding Judge Frank Gulotta, Jr. gave him the choice of incarceration or tapering from methadone. To avoid incarceration he followed the judge’s order to taper. Within a short time he relapsed back to heroin use and was found dead from an overdose in his bed. When learning of the death of Lepowski the judge’s only comment was that methadone is a crutch and a substitute and has no place in his court. By tapering from methadone patients enter into a status of high risk for overdose and death.12, 13

Dr. Dole responded to the criticism that methadone is nothing more than a substitute and a crutch many times. In 1996 he said: ―That seems like a vague charge that has no answer. A crutch is not a bad thing if you have only one leg, yet it’s not nearly as good a solution as it would be if you could re-grow your missing leg. Since we can’t regenerate a leg, why not use the crutch to get about and lead more normal lives?‖14

The courts appear to have accepted injectable long term naltrexone (Vivitrol) because it is not an opioid agonist.15 The medication is an extended release injectable naltrexone suspension



ACCEPTED MANUSCRIPT that lasts for twenty-eight days. Even though it is not an opiate agonist Vivitrol can have serious side effects that include: severe reactions at the injection site including tissue death, liver damage, breathing problems and increased risk of overdose. The risk of overdose can last for several months after the last injection and has resulted in deaths. 16 However, there are now ongoing studies using monthly injectable naltrexone to determine the feasibility of this

Downloaded by [New York University] at 12:13 05 August 2015

method as a possible maintenance therapy or medication to prevent relapse after treatment with an agonist medication . However, the courts can order individuals under custody to submit to Vivitrol for the duration of their supervision placing them at risk for overdose without long term studies concerning the long term effectiveness of the medication. In February 2015 Michael Botticelli was appointed the new Director of the Office of National Drug Control Policy. One of his first announcements was that any federal drug court that removed patients from their medication –methadone or buprenorphine -- would lose their funding.

In a randomized study of methadone patients that continued on methadone while incarcerated in comparison to those who underwent enforced withdrawal from methadone (routine care) showed that prisoners forced to withdraw had a lower rate of reentering methadone treatment than those who received continued medication in jail. The authors concluded that continuation of methadone during incarceration can after release reduce the risk of death from overdose and other behaviors associated with an active addiction.17 Commentary associated with the article indicated that 90% of incarcerated methadone patients will be ”cut off from their



ACCEPTED MANUSCRIPT medication.” Also reports from the CDC show that the death rate of methadone patients is 30% the death rate of those opiate users not in MMT.18

The criminal justice system is not the only offender and it is not uncommon for child welfare agencies to also regard methadone as an invalid medication to treat an opioid use disorder and

Downloaded by [New York University] at 12:13 05 August 2015

thus just a substitute for heroin. Children have been removed from their home because one or both of the parents are enrolled in methadone treatment. Methadone patients caught up in child welfare issues are forced to taper in order to maintain custody of their children. Child welfare agencies treat methadone patients as well as buprenorphine patients as untrustworthy. When children are placed in foster care the parents are supervised during visits. Parents are instructed to attend 12 step meetings and other forms of talk therapy that are ineffective in reducing physical craving for many patients and/or not evidence based. Parents that have complied with the courts instruction nevertheless have had their children removed from their home and placed for adoption. Thus the stigma of the parents is transferred to the children who are taken from their parents and homes.

Patients have been refused employment or fired because of their enrollment in methadone programs. Prior to the passage of the American with Disabilities Act and Title 3 the NYC Transit authority fired two employees who were enrolled in methadone treatment and two applicants were denied employment for current and past enrollment in methadone treatment. The court of the southern District of New York found the actions of the Transit Authority unconstitutional and



ACCEPTED MANUSCRIPT ordered the Transit Authority not to deny employment solely on the basis of enrollment in methadone treatment. However the court did authorize the Transit Authority not to place methadone patients in safety related conditions and that employment was predicated on satisfactory performance for at least one year in methadone treatment. This decision was upheld by the Court of Appeals. However, in 1979 the Supreme Court of the United States in the case

Downloaded by [New York University] at 12:13 05 August 2015

of NYC Transit Authority et al. v. Carla A. Beazer et al in a 5-4 reversed the decisions of the lower courts. The basic issue before the court was whether a government could choose not to employ an entire class of narcotic users. The constitutionality of the employer’s refusal to hire methadone patients was upheld as the Transit Authority had a rational basis for classifying narcotic users and by extension methadone patients. 19

In 1990 the Americans with Disabilities Act was signed into law covering discrimination in employment, transportation, public accommodations, communications and governmental activities. Methadone patients in Medical Assisted Treatment are covered under this law. The U.S. Equal Employment Opportunity Commission filed a lawsuit against United Insurance Company when they withdrew a job offer to a methadone patient after a drug test indicated he had methadone in his system despite a letter from his physician stating that he was enrolled in the program and the methadone was legally prescribed. The EEOC won the case and the company was sued.20 Methadone patients face stigma in the workplace despite the laws. One compliant patient has had to submit 120 urine tests to his employer over a 20 year period in order



ACCEPTED MANUSCRIPT to keep his job. Although he has been punctual he never received a promotion. He believes that this is because he is enrolled in methadone treatment. 21

Stigma also exists in the medical profession from biased and uneducated medical professionals--- physicians, nurses and pharmacists.22, 23, There are however medical professionals who are

Downloaded by [New York University] at 12:13 05 August 2015

educated about opioid use disorders, agonist medications, drug interactions, dosage issues and provide effective non-judgmental care to patients.

Medical and nursing schools may include

only a few hours on addiction and treatment with an emphasis on abstinence. Thus many medical professionals have a limited understanding of addiction and the need for prolonged maintenance with agonist medications. Therefore, methadone and buprenorphine are perceived by some as nothing more than substitutes and they may convince methadone patients that it is better for their health to taper from the medication. However, these attitudes and practices are also applied to impaired medical professionals who may be prescribed an agonist such as methadone for opioid dependency. State medical committees may order them to withdraw from the agonist, and take the antagonist naltrexone under medical supervision or forfeit their licensees to practice.

Furthermore, nursing homes across the country have refused to accept elderly methadone patients as residents possibly because of storage and compliance issues with the DEA. However, now nursing homes are refusing to accept aging Suboxone ( combination of buprenorphine and naloxone) patients who receive prescriptions from individual physicians although strict DEA compliance issues do not apply. Nursing home discrimination against elderly methadone and



ACCEPTED MANUSCRIPT Suboxone patients is now being investigated by The Legal Action Center in NYC. Discrimination from uneducated practitioners in the medical profession affects the health of methadone and suboxone patients who are regularly denied pain management. The core of this issue lies in understanding the differences between short acting and long acting narcotics and the pharmacological concepts of tolerance and narcotic blockade. 4, 6 Physicians and nurses perceive

Downloaded by [New York University] at 12:13 05 August 2015

any methadone orsuboxone patient who requests additional pain medication as drug seeking behavior. However, when compliant methadone patients are given control of their pain medication they will take a sufficient amount to control pain without abuse. 24

Pain management is not the only problem that confronts methadone and buprenorphine patients within the medical professions. Both methadone and buprenorphine patients may be incorrectly diagnosed and told that their symptoms are related to methadone or buprenorphine. Also they are told that in order to receive treatment or have surgery that they must taper from methadone or buprenorphine. Consulting with the addiction specialist treating them is often not taken into consideration as professionals that work in addiction are also stigmatized and their opinions may not considered valid.

As indicated above, language and semantics contribute to the misunderstanding of opioid use disorder. People with an opioid use disorder are perceived by the general public, professionals, or in the media as "junkies,‖ and medications such as methadone just feed an addiction to persons lacking willpower.25 Because opioid use disorders are treated on the periphery of health



ACCEPTED MANUSCRIPT care most medical professionals are ignorant of the medications, drug interactions, research, evaluations, and the long history of the use of agonist medications such as methadone. Judgmental language is commonly used: urine test results are "clean" or "dirty" rather than positive or negative. These little slips of language have a great impact on patients that

Downloaded by [New York University] at 12:13 05 August 2015

internalize the prejudice as they are continuously used over long periods of time.

Furthermore it is typical for the criminal justice system, child welfare agencies, and uneducated medical professionals to ignore attempts to provide guidance concerning unlawful discriminatory policies. NAMA-R is often contacted by methadone and buprenorphine patients that have attempted to inform the agency or individuals that what they are doing is against the law only to be rebuffed. Usually it takes NAMA-R working in conjunction with the patient and the patient’s program to get positive results. As expected the results are disastrous for patients not aware of their rights and that follow through with the demands being made of them. There are instances in which professionals employed by these agencies have taken retribution against the patient often resulting in failure and guilt. The most protective strategy is for patients to understand that opiate use disorder is a medical condition capable of treatment otherwise they become uninformed victims of discriminatory practices by community agencies. From the nationwide experience of NAMA-R, it appears that within the last two years a larger number of patients are being told that they must taper from their medication. Additional support is needed to examine, confront and end this dangerous and discriminatory behavior.



ACCEPTED MANUSCRIPT Methadone patients may face discrimination in housing if their status as patients is known. Homeless methadone patients create a stigmatized picture in the media and to the general public which is unjustly generalized to the entire population of methadone patients. However, a pilot study conducted by Housing First, an organization which provides scatter site housing to homeless persons with drug misuse and mental health problems refutes these stereotypes. Thirty

Downloaded by [New York University] at 12:13 05 August 2015

one methadone patients with serious mental health issues were housed in scatter site apartments with a team providing medical and social services. A comparison group of 30 were housed in other housing, including shelters without the supports that were provided by Housing First. The comparison group was created from the New York State Database. After three years 51.6% of the patients in the Housing First scatter site apartments remained in treatment vs. 20% of the comparison group in housing without the structure and services. These results are significant at p

Stigma from the Viewpoint of the Patient.

Stigma has become a primary social force facing patients in methadone and buprenorphine treatment. For quality methadone and buprenorphine treatment t...
276KB Sizes 3 Downloads 6 Views