| About Us | Treatment Information | Patient and Family Experiences | What's New | Frequently Asked Questions |
By Peter Vanderkloot, Advocate for Patient Rights
The following is being reprinted with permission from Harm Reduction Communication
Every time I'm asked to discuss methadone I'm faced with the same dilemma. Do I emphasize methadone the medication, the drug to which I owe my life, my freedom and my relative good health? The methadone which represented the first rollback of fifty years of laws criminalizing the very existence of the opioid dependent? The methadone which has no discernable effect on me, but which I will need and will take (happily) for the rest of my life? Or do I emphasize methadone the institution – the system of chemical parole that endeavors to keep tens of thousands of the most vulnerable under the thumb of perverse and avaricious bureaucracy?
There's no question of the need for this discussion: methadone is one of the most misunderstood and stigmatized chemicals on earth. Even amongst the harm reduction community myths and prejudices about methadone abound. Yet in the last few years methadone has also been undergoing a dramatic revival of reputation, and it seems that every day brings people with no previous experience of the subject onto the bandwagon. This group comes full of accurate, well-intentioned reviews by research panels and overviews in textbooks, where only the mention of "over-regulation" gives any hint of a downside to this wonder drug. To understand my dilemma, one must appreciate the depth of the harm created by the system that controls methadone.
The reality is this: methadone is a safe and effective medication, which has provided immeasurable benefit to hundreds of thousands struggling with the consequences of opioid dependency in a society which has labeled the opioid-dependent criminals. For chronic heroin users living under prohibition, methadone represents the most effective means known of reducing risk. It reduces risk of death due to overdose, disease or violence. It reduces risk of incarceration and homelessness. It can be used at a moderate dose to enable greater control over heroin use, or at a higher dose to cease use altogether.
The reality is also this: the system through which methadone is provided is a uniquely oppressive bureaucracy that greatly reduces the benefits of the medication and generates harm where none existed before. Methadone itself is a tool of harm reduction; the system that controls methadone is a system of harm production.
There are no other medications in the U.S. pharmacopoeia subject to the restrictions applied to methadone hydrochloride and its cousin LAAM. No other prescribed drug is administered only through federally licensed clinics. No other medication is so restricted that most patients must ingest it daily under the scrutiny of suspicious staff. No other substance can be prescribed only under the condition that the patient submit to "counseling" and screens for illicit drug use – in perpetuity. No other medical treatment is used as the means to ensure a captive population of subjects for research. In short, no other system takes a medication of such potential benefit, and uses it to cause so much harm.
The most obvious harm caused by the clinic system is due to the attendance requirements. The entire system is designed around observed ingestion and continual monitoring. Before they can get take home doses patients are required to attend their clinic six or seven days per week for a minimum of three months. Even under ideal circumstances, a patient is required to have been in treatment for three years before they can reduce the frequency of their visits to once per week. In reality, though, both state regulations and clinic policies combine to ensure that the vast majority of patients continue to attend at least three times weekly, and often daily, indefinitely. The consequences of this chemical tether affect every aspect of patients' lives.
The damage begins with the actual need to travel to the clinic. In many parts of the country the nearest clinic is hundreds of miles away, but even in cities like New York it is common for people to have to travel for an hour or more to their clinic – virtually every single day. Limited hours of operation make the situation worse still. Many clinics only allow patients to be medicated in a narrow window of opportunity, usually in the morning. Some clinics do not begin medicating until 7 or 7:30am. Combine this with the common exclusion of patients without regular, tax-deducted pay stubs or bursar's receipts from the first hour's medicating, and we are left with a system that does everything possible to prevent people from attending to their responsibilities. This is particularly damaging given the disproportionate number of patients who work odd hours or in the cash economy, receive training in informal apprenticeships or care for children in extended or non-traditional family structures.
The net result of these and a host of similarly restrictive policies is to make it very difficult for patients to find and sustain employment. A roster of perpetually unemployed patients is not such a problem — for the clinics, at least — when one realizes that whereas a working patient might be charged $25-$240/month, a patient on Medicaid is worth upwards of $400 to the program in the big states where it is reimbursable.
People go onto methadone maintenance for a variety of reasons, but one of the more common is the desire to reduce or eliminate street drug use. Most users I know would agree that avoiding "people, places and things," while not sufficient by itself, certainly makes abstaining easier. The methadone clinic system ensures that this will never be possible. No matter how long someone's been abstinent, no matter how far they've come from "The Life," as long as they're on methadone they'll be forcibly exposed to the drug scene on close to a daily basis. The nature of this drug scene, moreover, is also negatively impacted by the clinic system. Patients are commonly forced to accept methadone dosages that prevent them from feeling heroin. Many then turn to benzodiazepines or alcohol as a substitute — a switch that greatly increases the likelihood of overdose and accidents. This pill culture thrives in the clinics, and many patients find it impossible to resist. The clinic system then encourages both continued street drug use and the substitution of more dangerous drugs for less dangerous ones.
The nature of the clinic system ensures that patients will have to contend with the least qualified and most hostile staff imaginable. Clinics are generally required to have a fixed number of staff available but can only bill Medicaid at a flat, per-patient, rate — keeping salaries low and the incentive to offer services minimal. Counselors with "life experience" are almost exclusively antimethadone graduates of "therapeutic communities" (TCs), whose personal difficulties with abstinence frequently add resentment and envy to their pre-existing hostility to methadone. These TC staff predominate due both to clinics' reluctance to hire former (or current) methadone patients, and to the fact that TC graduates are frequently credited with "work experience" for their time in treatment — which gives them artificially inflated resumes and also serves to channel them into the treatment field.
Training for all staff is minimal and consists almost exclusively of psycho-social approaches to substance abuse that frequently stand in direct contradiction to the neurophysiological model addressed by methadone maintenance. This should not be surprising, though, as it is exactly this psychosocial approach which the clinics use to justify their "comprehensive" model and stave off their replacement by doctors and pharmacies. This general lack of understanding of methadone maintenance or its basis in medicine serves the system well, since knowledge would threaten the irrational status quo. The result of all this? An ignorant and hostile staff who regard methadone as merely a means of forcing a child-like patient population to accept "real treatment."
It would be difficult to design a more stressful and traumatic system if one tried. First, patients are doled out only the smallest possible supply of a substance that they need like food or oxygen. Then they are placed under constant scrutiny by a hostile and distrustful staff and regularly threatened with loss of access to their medication. The expectations of staff and the rules of conduct are vague and ever shifting. Patients are subject to continual reinforcement of their "junkie" identities or, worse still, find that they have been transformed from streetwise, independent dopefiends into institutionalized, dependent "methadonians." It is a system that reminds many patients of prison or parole, except that most prison or parole terms eventually end.
Patients aren't the only ones to suffer as a result of the clinic system. Local communities suffer. Taxpayers suffer. And access to methadone suffers, a fact that generates further problems for taxpayers, communities and patients.
The communities in which clinics are located suffer, and it is wrong to dismiss their complaints as knee-jerk "NIMBY-ism." By requiring daily attendance by their patients, the clinics serve as the nexus for a variety of street scenes. Patients who are frustrated in their attempts to leave "The Life" by clinic-generated roadblocks are often forced to make their clinic visits the centerpiece of their days. Friendships are maintained, drugs exchanged, goods boosted, all in the immediate vicinity of the clinic. This system ensures that the community only sees those patients who don't care about being seen: those with the least investment in the straight world. Those fearful of the stigma attached to methadone impacting on their jobs or families do their best to remain invisible as they rush in and out of the clinics. Those who have little to lose and few ways to express their hatred of the clinics provide the public with their image of a typical methadone patient.
The methadone status quo shafts the taxpayers as well. The average dose of methadone costs less than $1/day. The average cost to keep a patient in a clinic is around $5,000/year. The clinics argue vociferously that this money goes for essential psychosocial services. In reality, there is little evidence that ancillary services improve outcomes in general, but a great deal of evidence that the services provided in the clinics are of the absolute lowest quality – and that the prospect of being subjected to such interventions keeps many from the system. The indirect cost to the public of the clinic monopoly is also tremendous. Every person supporting a street heroin habit under prohibition is someone the public is potentially going to have to pay to incarcerate, hospitalize, prescribe HIV medications to and, frequently, to bury. Tying up limited funds in an overpriced clinic system means that hundreds of thousands who would accept and benefit from methadone will not have the opportunity.
In brief, the methadone clinic system is a cynical sham that keeps patients mired in the street life and on welfare, prevents people from working or getting an education, encourages misunderstanding about methadone and hostility to methadone patients on the part of the public and flagrantly wastes taxpayer dollars in the process.
Methadone is a safe and effective medication which has provided immeasurable benefit to hundreds of thousands struggling with the consequences of opioid dependency.
The methadone clinic system must go.Thankfully, we don't need to search far for the means to replace it. All that is needed is parity with other medications. If the regulations unique to methadone are repealed, if the laws prohibiting maintenance of addicts are rewritten, then methadone becomes just another medication, prescribable by private physicians, dispensable in clinics – in short available in whatever venues users and prescribers deem appropriate.
Putting methadone on par with other controlled substances seems a reasonable and achievable goal, but the forces dedicated to preventing it happening are formidable. We must recognize that it may be years before the medication ceases to be a tool of oppression. As we work towards this eventual goal, there remains much that the harm reduction community can do to reduce the damage caused by the methadone clinic system.
Just as with substance or paraphernalia prohibition, ignorance is the most valuable weapon of those who support the current restrictions on methadone. The first and most important task facing those who would challenge the status quo is to attack ignorance regarding methadone and the methadone delivery system, wherever it is found.
For many harm reduction-oriented service providers this means not only challenging bias and myths common in the community, but also having the courage to recognize that being marginalized and persecuted do not in themselves make experts of methadone patients. Most of those maintained on methadone have, if anything, received more misinformation from staff and fellow patients than has the general public. Few things are more painfully ironic than seeing the abuse and ignorance foisted upon methadone patients reflected back at well-intentioned advocates and used as the basis for more stigmatization of methadone.
Another common danger lies in our attitude towards research. The harm reduction community must avoid the temptation to dismiss solid research from NIDA because of feelings about their political agenda and the biased research it often produces. Similarly, we cannot allow our longing for "easy" solutions for those with heroin problems to blind us to the ever more clearly demonstrated fact that most chronic addicts appear to have significant brain changes that will not resolve with time.
Prohibition, and the drug war used to advance it, are not political abstractions for the hundreds of thousands of us who need opioids to survive. The methadone clinic system is a weapon of the drug warriors, and as long as it exists it will be used to control, degrade and injure. It is incumbent upon the harm reduction community to do everything in our power to assist people in gaining/maintaining access to methadone even as we help them survive the system that perverts it.
We must obtain and share as much information as possible, not just about the medication, but also about the clinic system itself. Keeping patients ignorant is a vital part of this bureaucracy's agenda, and encouraging their isolation is an important way of maintaining that ignorance. We must share with patients the weapons with which they can defend themselves. Every fact is a potential tool to be shared and spread: Federal and state regulations, contact information for regulatory agencies, program policies, the personal and professional backgrounds of staff. Harm reduction professionals have the means of accessing information about the clinic system not readily available to patients. We can share our resources with them just as we can act as conduits for patients to network and share their own survival tips with each other.
Let the patients know that the programs are not there to help them. Assist those who want to obtain truly supportive services from agencies that cannot exert control over them. Make sure that patients understand how the once largely confidential nature of the patient- program relationship has been destroyed by welfare reform, drug courts, infectious disease reporting and so on. Help them understand how information is shared amongst staff within the program. Let them know what the program defines as success and advise them on promoting a compliant, successful image while keeping as much actual information from their charts as possible.
Urine screening is everything in methadone programs, but knowledgeable patients can keep it from controlling them. What is and isn't this program screening for? What causes false positives? Which adulterants are detectable? How do they detect substitution? Would their collection procedures stand up in court?
Use your professional status and the weight of your agency to assist the patient. Do they need a letter documenting their volunteer participation? A statement of their medical disabilities? Many times clinics will yield if they think a patient has outside support.
Few who have not been there can fully appreciate how difficult it can be for a methadone patient to both clearly understand the forces with which they contend and then stand up to them. Deprived of knowledge and sustained by mythology, simultaneously labeled criminal, diseased and weak-willed, ashamed about street drugs and even more ashamed about methadone, beaten down by providers, family and the criminal justice system, it is no wonder that so many internalize the stigma. What is a wonder is that so many have not only survived, but are going on to challenge the status quo. As both patients and harm reduction professionals come to understand the distinction, we can work together for the normalization of a medicine which reduces harm and the destruction of a system which produces it.
Peter Vanderkloot is a long time methadone patient advocate.
Have an Opinion or Issue you would like to discuss? Submit it here. We will make every attempt to share all views and issues submitted. Unfortunately there is limited space, so editing decisions will be made.