The Ghost Haunting Methadone
Ethan Nadelmann on Harm Reduction
Follow-Up: David Mactas of CSAT
Methadone on the Internet
Pain Conference Info
Give People What They Want
Disaster Planning Revisited
Research Perspectives
Patient Confidentiality
The Ghost Haunting Methadone
A Mark of Infamy & Disgrace"It is no big surprise that methadone is stigmatized. During one of my first contacts with a staff member at another clinic, I was told to never forget that the patients are all liars, cheats and thieves. This was someone who has worked in methadone treatment for many years. One of our regulators calls methadone `Satan's Medicine.' Why shouldn't methadone be stigmatized when our own providers feel that the patients and the treatment are evil" - from an A.T. Forum reader and clinic director in Georgia.
The dictionary defines "stigma" as a mark or token of infamy, disgrace, or reproach. In a medical sense it is a characteristic indicative of a history of a disease or abnormality. In past times, a stigma denoted a brand burned into the skin of a criminal or slave.
All of those definitions seem to endlessly haunt the field of methadone maintenance treatment today.
Shedding light on this subject is a new, extensive and very insightful thesis by Herman Joseph, Ph.D. titled Medical Methadone Maintenance: The Further Concealment of a Stigmatized Condition. Joseph, who is a research scientist with OASAS (New York Office of Alcoholism and Substance Abuse Services) and chairman of the Chemical Dependency Research Working Group (CDRWG), wrote the 250 page study in 1995 as part of his work toward a Ph.D. degree.
The stigma associated with drug addiction and in some cases addiction treatment programs is a most powerful and pervasive negative force in American society. Stigmatization, according to Joseph's findings has been a major factor in preventing more extensive treatment of the estimated 750,000 opiate addicts in the U.S. He claims only 115,000 or 15% are in treatment. Further, such stigmatization has resulted in strong community opposition to opening new clinics in many locales, despite a need in many areas to stem the tide of HIV and tuberculosis transmission among addicts and the communities at large.
"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," he writes.
Transformations in Thinking About Addiction
Opiate addiction wasn't always stigmatized as it is today. In post-Civil War America, addicts were mainly upper- class women and wounded war veterans treated for their aches and pains with opiates by their physicians - a form of iatrogenic addiction. Opiates also were smoked by a marginal population of white underclass citizens and Chinese laborer immigrants.
Transformations occurred over the years into the 20th century as "elite opium smokers" from the field of entertainment and finally street heroin users from various poor urban groups (white, African American and Latino) joined the addicted population. The truth is that, in every era of our history, persons from various economic, social and ethnic groups have become addicted to opiates; one constant is that for a great many it became a chronic, relapsing condition.
"What essentially started as a condition that evoked compassion for risk groups such as the iatrogenically addicted in the 19th century, became a highly stigmatized criminalized condition in the 20th century." The infamy directed toward immigrant and minority group addicts was extended to include all addicted persons in general. Over the years, federal and local laws essentially made addiction a crime and it tied the hands of the medical treatment community; while also reinforcing and increasing the stigmatization of addicted people irrespective of class or ethnicity.
As Joseph points out, by 1963, the growth of stigma over the preceding century was complete; it was codified in law, psychological theories of addiction, and treatment modalities. The beliefs were that: "1. Addiction was caused by an underlying character disorder and psychopathic personality, thus creating a menace to the values of the country; 2. Treatment was directed towards abstinence in lockup prison-like programs or sheltered abstinence-oriented residences known as therapeutic communities."
No Place to Really Hide
Regarding methadone treatment, Joseph very clearly asserts that, "...irrespective of 'good science,' this study validates the transfer of stigma from heroin addiction to methadone maintenance. The scientific reviews in this study refute the mythologies and the stigmatization that have emerged against the (methadone) 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."
Joseph references a speech by Dr. Alan Leschner of NIDA in which he stated that stigma is one of the greatest problems facing the delivery of services to addicts, especially those in methadone treatment. Joseph states, "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 ...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."
Joseph's field research focused on a group of highly functional methadone patients in a "medical maintenance" program being treated by internal medicine physicians in hospital-based medical practices. The patients were employed in good jobs or the owners of businesses. For the most part, they were upper or middle class, married with families and, while they also regarded methadone treatment as a legitimate medical modality, they realized that professionals and society-at-large regarded it as just substituting one addiction for another. Methadone maintenance was to them a stigmatized condition colored by psychopathic characteristics of heroin addiction.
Joseph found that even those compliant and well-functioning patients in his study were encumbered by two separate social identities:
· A superficial "face" or identity that patients presented to their families and the world; a functional adult and law abiding citizen.
· Hidden identities that were burdened by past opiate addictions which might have included illegal activities and in some cases arrests and incarcerations. Although currently "clean" in a methadone program, the patients were still fearful of discovery because of the stigma attached to the medication, the program, and/or past behaviors.
Even in the less draconian confines of medical methadone maintenance patients feared being exposed as "legal drug addicts," dependent on methadone, with all the unsavory traits associated with opiate addicts. If they should "come out" with employers, fellow workers, or even unknowing family members, there is the constant concern that their slightest failing might be interpreted as a return to drug abuse: e.g., showing-up late for an appointment, a morning headache, or even symptoms of a common cold might be interpreted by "knowing others" as possible evidence of reversion to deviant behaviors. Hence, the methadone patients came to view social acceptance as dependent on keeping a "dirty secret."
While Joseph's paper is exquisitely supportive of medical maintenance approaches to methadone treatment, he has admitted personally to us that the modality today often presents only a "better place to hide" when it comes to truly overcoming the stigma of past addiction and recovery via methadone. That is, such patients are relieved of the obvious exposure of reporting to public clinics, but they cannot escape the haunting specter of stigma that accompanies them throughout their daily activities.
As Joseph compassionately remarks, "What makes the stigma even more difficult is the fact that the acquiring of addiction is regarded as an act of willful behavior as opposed to a stigmatized [in a medical sense] 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."
Joseph continues: "According to advocacy groups like NAMA (National Alliance of Methadone Advocates) the stigma attached to methadone treatment is almost as painful, if not more so, than being addicted to heroin. Nationwide, thousands of employed socially rehabilitated methadone patients are under more increased surveillance than probationers and parolees. Thus, socially rehabilitated employed 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."
Overcoming the Negatives
Joseph points out that the stigmatization of methadone treatment has provided many negative results, such as: the inability to open new programs in many communities; the lack of adequate funding to increase capacities at existing programs; and the fact that methadone maintenance is still illegal in some states and in others daily doses are limited to inadequate levels. Methadone treatment has been poorly treated by the communications media and widespread misinformation is still prevalent among health care professionals. "These misunderstandings lead to biases and further stigmatization of the patients and lack of support of the treatment," he writes.
What does Joseph recommend for turning the negatives into positive action? For starters...
· A recognition of modern neuroscience approaches to addiction treatment which will lessen the stigma associated with methadone treatment.
· More studies and research into the validity and practice of medical maintenance approaches to methadone treatment to enhance and further the modality.
· Examinations of regulations and/or advisability of withdrawing patients from methadone after set periods of time.
· More education for physicians and health care professionals about the nature of addiction and methadone maintenance focused upon dispelling prejudicial and biased attitudes toward patients and the modality itself.
· The continued formation of patient advocacy groups should be encouraged and supported to deal with clinic, local, and state issues relating to methadone treatment policies and regulations.
· Patient advisory groups dealing with clinic problems should be encouraged in dealing with local and state issues relating to clinic policies and regulations.
· Physicians, administrators, scientists and patients should begin to educate and meet with political and community leaders to develop new or expanded programs, especially where the spread of HIV or TB epidemics must be controlled within communities.
· "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."
Ethan Nadelmann on Harm Reduction
Whenever the subject of "harm reduction and methadone maintenance treatment" comes up, experts in the field mention the name Ethan A. Nadelmann. He is director of the Lindesmith Center, a project of the Open Society Institute, which was created and funded by the international financier
and philanthropist, George Soros. The Lindesmith Center is a drug policy think tank named after Alfred Lindesmith, a distinguished sociologist and professor at Indiana University who was among the first scholars to challenge punitive prohibitionist policies in the United States. A.T. Forum spoke with Nadelmann to learn his views.
A.T. FORUM: What do you think will bring about real change in methadone treatment?
NADELMANN: For one thing, there are important developments in methadone treatment taking place in Europe and Australia with their more progressive approaches to medical maintenance (i.e., treatment by primary care physicians and methadone dispensing via local pharmacies). Plus, the two National Academy of Sciences Institute of Medicine reports that have come out in recent years, and guidelines on methadone treatment published by Center for Substance Abuse Treatment (CSAT) at DHHS will do much toward educating the field and serving as a catalyst for change.
As another force for change, methadone advocacy groups, including the National Alliance of Methadone Advocates (NAMA) and Methadone as a Legitimate Treatment Alternative (MALTA), are increasingly active in fighting discrimination against patients, and making the scientific evidence better known to the public.
At the Lindesmith Center, we are working with a variety of organizations to make methadone more readily available outside of traditional clinic settings. For example, the whole notion that patients with AIDS should have to report daily to a methadone clinic is really quite inhumane. It's definitely not called for by any sort of medical criteria.
A.T.F.: Where's the opposition coming from to making methadone more readily available to anybody who wants it to aid recovery from heroin addiction?
NADELMANN: One major barrier is the U.S. Drug Enforcement Administration. The DEA argues that any loosening of restrictions on methadone would mean more methadone on the illicit drug market and more methadone overdose deaths. But black market methadone invariably goes to active heroin users who won't or can't get into a legitimate methadone program. Expanded methadone availability is the logical solution.
Another source of opposition is the methadone providers. They point to studies showing that "high threshold" (i.e., full-service) clinical approaches are more effective than "low threshold" (e.g., Interim programs) modalities. But, the other half of the picture is that low threshold programs offering only minimal services besides methadone dispensing are definitely more effective than nothing at all, and may prove more attractive to hard core heroin users who are unwilling to put up with the requirements imposed by high threshold programs. For many, these programs can provide a bridgeto more comprehensive treatment and other positive life changes.
Interim methadone maintenance was approved in the past as a low threshold approach. Studies have shown that such a modality can be effective and even a better alternative for some patients. If a patient for one reason or another requires services beyond basic medical care and methadone p; such as psychiatric or family counseling p; why shouldn't these be provided outside the methadone clinic setting?
A.T.F.: Where do the answers lie?
NADELMANN: Paradoxically, the one thing that might spur real changes in methadone treatment programs may be the managed care revolution. For better or worse, managed care focuses on bottom-line results. High threshold programs, if they're run well, can provide good results for the money. But, some of those programs cost more, and produce less, than more pragmatic approaches that focus on making methadone as available as possible to as many people as possible.
Low threshold and medical maintenance modalities are both more humane and cost-effective approaches that should be available in addition to high threshold programs. Restricting methadone to high cost, full-service programs is certainly not in the public's best interest when we consider the increasing medical problems, HIV/AIDS, TB, and crime among addicts not receiving any sort of treatment.
The ideal approach might be a whole menu of methadone programs ranging from high to low threshold that can best meet the needs of individual patients.
Under managed care, methadone programs will have to get very good at what they do and become cost-effective or they won't be able to survive. My fear is that dysfunctional methadone programs could end up eroding support for methadone as a legitimate treatment modality. One reason for this is that politicians and the public are still abysmally uninformed about the validity and effectiveness of methadone itself, with or without ancillary services for patients.
A.T.F.: Is there anything patients can do?
NADELMANN: Yes... patients themselves can be an enormously powerful force by writing letters to the editors of key publications, calling or visiting their legislators and, in general, 'putting a human face' on the issues. The stigma surrounding methadone and patients in treatment can't be removed until people are willing to step out of the closet and say, 'Hey, this is who I am, I'm a good citizen now, and I have certain rights.'
EDITOR'S NOTE: Nadelmann and Jennifer McNeely, senior research associate at the Center, have co-authored an articlep; "Doing Methadone Right" - that may be of interest to A.T. Forum readers. The authors make some strong arguments for less government regulation and providing better treatment for methadone patients. For example, they write: "The poor utilization of methadone in the United States represents a clear case of politics and prejudice trumping science and the interests of public health." .... "With 500,000 to one million heroin addicts in the country, any method that's proven effective in reducing heroin use and heroin-related disease, death, and crime needs to be made as readily available as possible - especially when it's safe and relatively inexpensive."
The article, "Doing Methadone Right" recently appeared in The Public Interest, a quarterly public policy journal. A copy of the article can be obtained by contacting The Lindesmith Center by telephone at 212-887-0695 or by e-mail: enadelmann@sorosny.org. WebSite address is the following: http://www.soros.org/lindesmith/tlcmain.html
Follow-Up: David Mactas of CSAT
Follow-up with David Mactas;
CSAT Reader Input Needed Re: Medical Methadone Maintenance
In our last "From the Editor" column we reported that David Mactas, Director of the Center for Substance Abuse Treatment (CSAT), said they were in discussions working toward assuming the current responsibilities of the FDA regarding methadone oversight. We followed-up with him again in late March to learn of what progress they were making.
According to Mactas, CSAT established a working group to determine how such a transition might take place, what resources and staff might be needed, and other concerns that would need to be addressed. This group was expected to report the results of their findings sometime in April.
Mactas stressed, however, that even if his agency does assume oversight of methadone programs and adopts more of an accreditation model as described in the 1995 IOM report (Federal Regulation of Methadone), he doesn't foresee a loosening of regulations or lowering standards of patient care. Rather, CSAT's interests will be in improving patient care and continuing to deal with the problems of potential methadone diversion. One difference might be upgrading methadone maintenance programs so they can become more self-policing, without the bonus of government agencies constantly scrutinizing their operations.
Another problem CSAT will need to face is funding. At present, Mactas indicates, they are looking at reduced funding for the agency and there is no telling where the funds for them to assume increased responsibilities might come from. Certainly, any transition of responsibilities from the FDA to CSAT will require quite some time to achieve.
Another issue we questioned Mactas about was CSAT's position regarding a medical maintenance model as it applies to methadone treatment. That is, long-term and stable patients being treated by primary care physicians and obtaining methadone via prescription from local pharmacies. He said the whole issue is very much of interest to them, and the subject of internal discussions, but they have not arrived at any definite conclusions. Again, the matter of potential methadone diversion for illicit use and keeping accurate records of how this controlled substance is distributed would need to be addressed.
Mactas said he would welcome comments from addiction treatment professionals and patients regarding their views of medical maintenance, and would "personally read every note or letter." We volunteered the services of Addiction Treatment Forum to collect responses from our readers and forward them to him, and he was most enthusiastic about the idea.
SO, HERE'S YOUR CHANCE:
Give your responses and comments on the feedback card in this issue, OR Write or fax us with your comments regarding medical maintenance. We will forward all responses to Mactas and report on his reactions in a future edition of AT Forum. (See original CSAT article From the Editor)
A.T. Forum
1750 East Golf Rd., Suite 320
Schaumburg, IL 60173
FAX: 847-413-0526
Stewart B. Leavitt, Ph.D., Editor
Methadone on the Internet
LINDESMITH CENTER: This site has a lot of information regarding methadone topics and you can jump (or "link") from there to many other sources regarding drug abuse, drug treatment and social/legal addiction treatment issues.
http://www.soros.org/
lindesmith/tlcmain.html
SURFING: In our "cyberspace" explorations we've found there are literally thousands of resources addressing methadone and related drug treatment topics. To spin your own web to capture some of these riches, enter the following Internet address into your favorite web browser:
http://www.search.com/?msn.srch2
There you will find a variety of "search engines" that will in different ways (which are explained on-screen) scour cyberspace for information of your choosing. Merely enter the term "methadone" (no quotes required) into one of those search facilities and you will find a bevy of sources awaiting your inspection. "Happy surfing," as they say. Please contact us regarding your favorite finds so we can alert readers in the next edition of A.T. Forum and on our new A.T. Forum Web Site.