The Ombudsman Let's Stop The Insanity

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					                                           The Ombudsman

               The Newsletter of the National Alliance of Methadone Advocates

Issue Number 3/4, Spring/Summer 1995

Contents

    •    Let's Stop The Insanity by Anthony Scro
                                                                •    Remember Us (author's name withheld)
    •    Presidential Notes by Stan Novick
                                                                •    In Memory of John Mordaunt
    •    The Editor's Letter
                                                                •    Important Dates to Remember
    •    Methaphobia: Us and Them by Ira Sobel
                                                                •    Recommended Reading
    •    Stigma: The Invisible Barrier by Herman
                                                                •    "Fire in Our House"(Review) by Jeffrey
         Joseph and Joycelyn Woods
                                                                     Millman
    •    Methadone Treatment in New York by M.
                                                                •    Important Publications & Presentations
         Grenga and H. S. Nelson
                                                                •    Cartoon - What Starts With a P!
    •    Methaphobia Crossword Puzzle
                                                                •    TRIPS No Longer Operating
    •    The Impact of Managed Care by Patricia
                                                                •    In The News
         Williams




                                       The Ombudsman (SWEDISH)

    1.   a government official (as in Sweden or New Zealand) appointed to receive and investigate complaints made
         by individuals against abuses or capricious acts of public officials.
    2.   one that investigates reported complaints (as from students or consumers), reports findings, and helps to
         achieve equitable settlements.

Requests for copies of this newsletter may be sent to the Managing Editor. NAMA would appreciate if you include
$2.50 for duplication and mailing costs However, no one will be denied a newsletter for lack of money and even a
partial payment would be greatly appreciated. The National Alliance of Methadone Advocates is a not-for-profit
organization.




                                      Let's Stop The Insanity
                                                     by
                                                Anthony Scro

    Anthony Scro is a NAMA volunteer, founder of the NAMA affiliate Association for the Betterment of Addiction
    Treatment and Education (ABATE) and has been a methadone advocate and worked in the field for over 20
    years. Scro, T. 1995. Let's stop the insanity. The Ombudsman (Spring/Summer) Nos. 3/4: 1.




It goes on and on. It seems like it may never end. We've all heard the same questions. Suffered the same
humiliation. "When are you going to get off that stuff?" "Why do you need that much?" "Don't you want to detox or,
at least, come down a little?" "Do you plan to be a methadonian for the rest of your life?" "How in God's name can
you let that baby be born addicted to that poison?"
It seems incredible to me that the medication methadone, the primary means of effectively treating opiate addiction
recognized by physicians, governments and countries all over the world, is as misunderstood now as it was when it
was first introduced as a treatment regimen in the 1960s. In the "old" days, I naively believed that intolerant
attitudes and controversies surrounding dose levels, length of treatment, take home policies and pregnancy would
gradually dissipate due to a combination of education, documentation of positive results and the mere passage of
time. Unfortunately, this enlightenment has not taken place. Rather, it has intensified to a point defying both reason
and scientific reality. After many discussions over the years with advocates and critics of methadone, I am simply at
a loss to explain a phenomenon whereby a drug with proven efficacy is so emotionally and unfairly criticized. I can
only conclude that those suffering from this fear of methadone and/or hatred of methadone patients simply because
they choose a certain form of treatment, have developed a diagnosable mental disorder which I call methaphobia.
This condition, if not treated can be dangerous to your health and the health of methadone patients.

In past years, many of the judgmental statements and stigmatizing philosophies about methadone served to make
patients feel "bad" about what they should be feeling "good" about. That was damaging enough. But today the
stakes are much higher. In light of the therapeutic use of methadone in the fight against HIV/AIDS; it has been
found that methadone works as a true HIV prophylaxis if a former injecting user follows the medically prescribed
treatment plan and practices safer sex behavior. "Methaphobic" attitudes can be deadly, can actually cost lives if an
opiate user is denied access to methadone simply because someone does not like the treatment method. Here are
some recommendations for the treatment of "methaphobia", specifically addressed to those working in programs.

         •   Take ownership of your attitudes. Accept them as yours and no one else's. Even if you do not wish to
             change them, take care not to transfer them onto your patients who rely on your objective guidance.

         •   Be open to the information about methadone. Read some of the reports, studies and findings. For
             example, a December, 1994 report released by the Institute of Medicine, an arm of the National
             Academy of Science, made these recommendations among others.

               1.   Physicians should be allowed to prescribe whatever dose of methadone is necessary for individual
                    patients.

               2.   Methadone patients should be allowed to continue treatment if they are hospitalized.

               3.   Physicians should decide if addicts are appropriate methadone candidates, how long to
                    administer the drug, and when patients can take methadone at home instead of in a clinic.

               4.   Pregnant addicts should be quickly treated with a full course of methadone, as there is no
                    evidence that methadone is toxic to the fetus, while heroin is. Editor's Note: Withdrawal from
                    heroin is contraindicated for pregnant addicts especially during certain periods of fetal
                    development.

         •   Listen to your patients. Ask her/him what they need to be productive. After all, whose recovery is it
             anyway? Treat her/him more like a consumer, and strive to attain a high level of consumer satisfaction.

         •   Learn to appreciate success measured by positive outcomes. Don't get hung up or locked into a dose
             level, a mere number. The only number that counts is the one that eliminates opiates. By satisfying the
             physical needs of the patient, the climate is then established for the application of all the valuable
             supportive services.

         •   Don't force pregnant women out of treatment. It is tragic to think that an expectant female, otherwise
             motivated for change, would be forced to resort to street heroin by virtue of an inappropriately ordered
             withdrawal from methadone, thereby exposing herself and the unborn child to harmful behavior. Entire
             families are dying. It is critical that there is continuity of care during the pregnancy period.

Finally, let's end the madness by signing our own "Contract" to work together with a wonderful tool (methadone
treatment) to save lives.
                                                 Presidential Notes
                                                        by
                                                    Stan Novick

Stigma (STIG-ma): noun {From the Latin for "mark" or "brand"}

    1.   a scar left by a hot iron
    2.   a mark of shame or discredit
    3.   an identifying mark or characteristic, i.e.: a specific diagnostic sign of a disease

Everyone touched positively by methadone maintenance treatment is familiar with stigmatization. Patients, family
members, friends, staff- we have all experienced the consequences of being branded by the myths and
misunderstandings which surround our me dication. From callous and inappropriate treatment by medical
professionals to discrimination in the workplace, the stigma attached to methadone and methadone maintenance
touches every aspect of our lives. All of us have recognized the stigma. We are aware that the treatment that has
meant rebirth for us or our loved ones means something very different to the public. Many of us have learned to
adjust to the stigma. Most keep this part of our lives hidden from all but a few. Tragically, too many of us have come
to accept the stigma. We brand ourselves with this mark of shame, accepting society's labels as our own. And
believing ourselves to be less worthy than other people, we sometimes act accordingly.

Who is responsible for the stigmatization of methadone maintenance patients? Is it the tabloid press with their
sensationalistic stories? Is it elements among the government agencies and anti-drug organizations who have an
interest in the status quo? I s it the proponents of abstinence-oriented treatments who fear competition from a
treatment which, unlike their own, can document a substantial rate of success? Clearly each of these groups share in
the blame, but to find some of those most responsible fo r the current state of things, often we need look no further
than the administrative offices of our local MMTP. For tragically, some of the biggest perpetrators of this
stigmatization are the very providers of treatment themselves!

How do many providers stigmatize the very treatment they provide and the patients to whom they provide it?? They
do so by constantly telling patients, public, and staff exactly what they think of the medication they dispense, the
patients to whom they dispense it, and the scientific basis of their program. Every time certain providers ignore the
proven protocols of methadone maintenance treatment and deny patients adequate dosages their message is clear:
"This stuff is bad for you. The less of it you take the better." Every time a provider refers a patient to a blatantly anti-
methadone twelve-step meeting a message is sent: "Their opinion of you and your treatment is valid." Every time a
program through its actions dismisses thirty years of solid research they literally shout out: "Science does not matter,
the proper tools are unnecessary...we know what you need!"

Nowhere are such stigmatizing messages more loudly proclaimed or the consequences of the demedicalization of
methadone treatment more clearly evident than in the staffing of many programs. When a program hires a Freudian
social worker ignorant of the basics of neuropharmacology, the message they are sending their patients is one of
indifference. When they hire an ex-heroin addict graduate of an abstinence oriented modality over an equally
qualified methadone maintenance patient the message is one of contempt. The halls of such programs echo with
psychobabble; a hodgepodge of catch phrases and platitudes fill the ears of the vulnerable. Patients desperate for an
understanding of the illness they suffer and relief from the stigma they already bear find neither readily available. By
maintaining a staff either completely ignorant of the neuropharmacology of the medication or actively opposed to the
treatment on moral or judgmental grounds, these providers confirm and perpetuate their low opinion of the modality.

These providers speak plainly, and these providers are heard. In a society already plagued by the myths that
perpetuate the stigmatization of methadone patients, the opinions of such providers carry all the more weight. They
are heard by the counselor who urges stable patients who owe new and productive lives to methadone to "get off
this stuff." They are heard by the physician who leaves the suffering in agony for want of an adequate dose of
painkillers. They are heard by the judge who denies caring parents custody, telling them that they're "not really in
treatment". They are heard by the loved ones who watch with suspicion, convinced that the medication is just a
substitute poison. And they are heard by the patients who think the others must be right, as they find that society's
chains have replaced those of the streets.

We must raise our voices in response. The brand with which the purveyors of stigma would label us has been forged
of lies, myths, and jealousy. The knowledgeable patient will not be branded; a knowledgeable public will not accept
the branding. By raising our voices in unison we can spread the knowledge to counter stigma, and it is to the
providers of treatment to whom we must first call. We must demonstrate to those who run such programs that their
practices hurt not only their patients but the modality and drug treatment as a whole. All those who support quality
methadone maintenance treatment must understand that by empowering patients and eradicating ignorance we are
empowering the modality ensuring a bright future for MMT. We must reach out to all within the community and
support those staff members who, despite often overwhelming obstacles, bring humane and successful treatment to
tens of thousands. By joining with us to promote understanding of the basis of quality methadone maintenance tr
eatment, providers will ensure a brighter future for themselves and us all.

On a more positive note, all the hard work put in by NAMA's membership and affiliated organizations has been
paying off. Increasingly, NAMA is being recognized as the premier methadone advocacy organization in the nation.
This was most tangibly demonstrated by the award of a grant to NAMA from The Lindesmith Center, a drug policy
reform organization within George Soros' Open Society. We wish to express our gratitude to the Lindesmith Center
for their support of NAMA, as well as for the pioneering work they've done in uniting once isolated elements of the
movement in a common struggle to educate the public and develop innovative approaches to old problems.

As the demand for such innovation continues to grow, NAMA has been busy at the numerous conferences called to
examine the issues. On March 22 we attended the New York Academy of Medicine's conference, Harm Reduction,
Drug Policies and Practices: International Developments and Domestic Initiatives, where I spoke on "The Methadone
Patient as Consumer". There we met many old and new friends from across the nation and around the world.
Perhaps the most exciting of the many speakers who addressed the conference was Lindesmith Center Director
Ethan Nadelmann. Ethan's direct and powerful call to action moved the crowd visibly.

Next came the Strategies For HIV/AIDS Prevention: Research, Practice and the Media (April 13, 1995) organized by
methadone activist Jane Blansfield and held at Columbia University. I appeared on a panel discussing the importance
of methadone maintenance in reducing the spread and impact of HIV. In light of the recent upsurge in heroin use in
the United States, the importance of expanding quality methadone maintenance treatment in order to stem the tide
of HIV infection can not be overstated. Beth Israel Medical Center President and unwavering MMT supporter Dr.
Robert Newman also appeared on this panel. His analogy between the discharge of MMT patients for drug use and
the denial of treatment to tuberculosis patients who "willfully persisted" in coughing up blood drew cries of
recognition and outrage from the attendees. Given that many programs in the US routinely discharge patients for
marijuana use, we can only hope that more providers would recognize the truth of the simile, and discontinue th is
unethical practice.

Closing out this round of spring conferences was the Northeast Conference: Drugs, Sex, and Harm Reduction, held at
the City University of New York. NAMA Advisory Board member and friend of patients Chuck Eaton chaired the panel
Substance Abuse Management: Methadone Maintenance. NAMA vice-president Joyce Woods gave a heartfelt and
well-received critique of anti-methadone attitudes within the harm reduction community with the presentation, The
Anti-Methadone Propaganda in Harm Reduction. Chuck Eaton's Toward Fulfilling the Promise of Methadone
Treatment as Harm Reduction: A Patient-Owned and Operated Treatment Program presented the development of
patient run methadone program cooperatives. These cooperatives are an exciting new development as they have the
potential to re-invigorate the modality and re-empower the consumers of treatment.

In addition to our appearances at conferences, NAMA is being increasingly consulted by policy makers and public
health officials who are coming to appreciate the need for accurate information and input from the consumers of
MMT. We were recently invite d by Dr. Henry Blansfield, a noted expert in the fields of addiction and AIDS, advocate
for addicts, member of NAMA's Advisory Board, and author of the powerful piece "Addictophobia", to consult with the
State of Connecticut's Mental Health and Substance Abuse Division regarding the formation of patient advocacy
groups for the fifteen programs in that state. Our expertise was also sought on a federal level, when we were
contacted by the Senate Judiciary Committee regarding its upcoming reevaluation of the federal regulations
governing methadone maintenance treatment. This has the potential to be of crucial importance to MMT, and you
can be certain that NAMA will keep you informed as the hearings near.
In coming months, look forward to NAMA's presence at the Drug Policy Foundation Conference in Santa Monica
(October 18-21, 1995) and at the National Methadone Conference in Phoenix (November 1-4, 1995). Also on the way
is the article, "Starting a Methadone Advocacy Group", authored by Joycelyn Sue Woods, Hector V. Maldonado, Luis
Torres, Jeffrey Millman, Peter vander Kloot, and myself. It will be published in the inaugural issue of the Journal of
Maintenance in the Addictions. Dr. J. Thomas Payte is editor of the journal, which in addition to the usual focus of
scientific and professional publications will present articles on advocacy, stigma, and patients' rights. NAMA is
honored to be considered for publication in this inaugural issue.

Remember, the system will never change until we join together to make it change. Together we can make a
difference!




                                               The Editor's Letter
                                                       by
                                                Joycelyn Woods

This is a super-duper double issue of The Ombudsman and I think that you'll agree with me that it is the best one
yet. With each issue I worry because I believe that the issue is so good that it just could not be "topped" and I don't
want the next issue to be disappointing. But, every time you come through with wonderful contributions and The
Ombudsman just gets better and better!

Before I talk about this issue I have an announcement to make -- NAMA has received funding -- finally we have been
recognized for the hard work that all of us are doing and the importance of our mission. The Drug Policy Foundation
and Lindesmith Center gave NAMA a generous grant. With this moneys we have been able to extend support to our
affiliates, including helping the organization of about 30 national affiliates/chapters and 9 international groups.1 We
are quickly growing into the stro ng network of patient advocates that I envisioned seven years ago when NAMA was
born. It has been a lot of work - many late nights burning the midnight oil, but the seeds planted are being to sprout
and most important beginning to have a real impact. Of course, the amount of work we have ahead of us is
tremendous, but it is all beginning to seem possible.

And, in case you haven't noticed NAMA has a new phone number: (212)595-NAMA. So give us a call, or send us a
FAX.

This issue of The Ombudsman begins with Tony Scro, a long time methadone advocate. His article, "Let's Stop The
Insanity" introduces the topic of this issue - methaphobia. Scro concludes with a challenge to "Contract to work
together with a wonderful tool (methadone treatment) to save lives."

The methaphobia theme continues with Ira Sobel's, "Methaphobia: Us and Them." I am also very pleased to
announce that Ira Sobel has joined the Newsletter Committee as Editor-at-Large for The Ombudsman. Ira has
written articles that have appeared in the newsletters of several of our affiliates, including Methadone Awareness.
And now he joins us, so expect to see more of his work.

Continuing with the theme of methaphobia is " Stigma: The Invisible Barrier," which consists of excerpts from
Herman Joseph's dissertation on stigma.

Michael Grenga and Spencer Nelson discuss the dramatic changes that methadone patients in New York have
experienced over the past 10-15 years in Methadone Treatment in New York. It reflects what has occurred across the
US.
And finally Pat Williams has written a very important article, "The Impact of Managed Care." Each of the 50 states
will have their own version of managed care and it appears that methadone treatment will be changed drama tically -
- and to our detriment. So it is important that we understand what will be thrust upon us in the next years.

A new feature of The Ombudsman will be the column "Remember Us." The idea for the name came from the
anonymous article appearing in this issue. Remember Us gives the oppressed a place to express their feelings and
observations.

Our Archivist and Information Specialist, Jeffrey Millman has prepared for our 'information' "Important Dates to
Remember," the bibliography "Recommended Reading," and "Important Publications & Other Information." In
addition to all this, he has reviewed the video "Fire in Our House". The video is an excellent educational film on harm
reduction and needle exchange. (And, I've been told that I am in it for a second handing out needles and methadone
advocacy.)

Of course I can't forget the "Methaphobia Crossword Puzzle".

And, finally "In The News" brings The Ombudsman up to date, at least as the news goes -- covering the news across
the nation and internationally.

We all know how painful methaphobia can be. But whether it's methaphobia or discrimination if we analyze this you
will find that ignorance is the driving force behind those things that we struggle against. The solution is not pointing
fingers because that will not change things. NAMA is dedicated to education about the Dole-Nyswander Methadone
Program for this is the only way to end the fear, the misinformation and ignorance.

Join us - to end the stigma and prejudice and to reverse the ignorance that feeds methaphobia.

Together, we can make a difference. Together, we can change the world!

1. NAMA no longer receives support from these organizations.




                                    Methaphobia: Us and Them
                                                         by
                                                     Ira Sobel


    Ira Sobel, M.A. is Staff Writer and Researcher for Methadone Awareness, Editor-at-Large for The
    Ombudsman and has written articles for the newsletters of many of NAMA's affiliates. Sobel, I. 1995.
    Methaphobia: Us and Them. The Ombudsman (Spring/Summer) No. 3/4: 5-6.




Have you ever been discriminated against because of being on methadone? Were you ever blackballed by a 12 step
program and at the same time told to sit still and shut up? Have you ever heard the different labels people call us
and the medication we are taking, methadone? Well, if these things have happened to you, then you have
experienced "METHAPHOBIA." This is a state-of-mind in which someone or a group displays an intense fear, bias and
prejudice against people on methadone and methadone programs. Anyone or any organization has the capability of
being methaphobic. All it takes is a feeling of animosity for drug addicts coupled with distrust and misinformation
about methadone.

We on the program, have been the victims of prejudice. We have had to overcome difficulties in the early stages of
methadone treatment. It comes down to the issue of acceptance. We want to be accepted as being in a legitimate
treatment modality just like therapeutic communities, drug free programs, day care programs and after care
programs. The decision to get into treatment and our choice of treatment remains with us. While drug addiction is
viewed as a disease, being on methadone is looked upon as a weakness. That's where we have to change people's
attitudes and perception of us.

People on methadone everywhere must continually be on guard against methaphobics. We must defend ourselves
against anything or anybody that proves to be negative and hostile. Any injustice done to one of us, hurts us all. We
have been stigmatized and stereotyped to the point where there is now a clear distinction between us and them!!!
That is us on methadone programs, the professionals in the drug abuse and addictions field that believe in
methadone treatment and those open-minded folk that consider methadone awareness to be recovery.

As for them, the methaphobics could be everyday people, those in recovery that follow Narcotics Anonymous
traditions, law enforcement agencies, some people that work in the medical field and those that work for methadone
programs who treat patients poorly and in essence can't be trusted. The first chance the methaphobic gets, he will
take advantage by creating a problem for the person on methadone. Whether it is a staff member on our programs
or an employer, methaphobics can be anywhere.

It just seems that the good programs and good patients are not above being put down by the methaphobics. They
clearly don't believe that someone on methadone can recover from opiate addiction and be a productive member of
society. In essence, methaphobics want to put us all in a jar and make things difficult. That's how it goes. A staff
member known for his or her stern treatment of patients will kick out reprimands to those that only want to get
better.

There are those methaphobics that would feel justified in dismantling the whole methadone system. That is
methaphobia at its most extreme. They will not stop abusing us until everyone on methadone is either thrown off the
program or beaten down. That is exactly why we have to defend ourselves and more importantly, we must unite as a
force to be reckoned with. People on methadone must stick together if we are going to overcome the methaphobics.

My proposal for overcoming the wrath of the methaphobics are as follows:

         •   Go to methadone advocacy meetings.
         •   Start methadone advocacy groups.
         •   Read and write articles for methadone advocacy newsletters.
         •   Pass along important information that everyone on methadone needs to know.
         •   Get up and stand up for your dignity and rights.
         •   Fight against blind-dosing, supervised urines and other clinic policies that are demeaning.
         •   Be familiar with the state regulations ("regs") that preside over methadone programs in your state.
         •   Be involved! We can no longer allow others, like providers to make decisions for us that impact on our
             treatment and lives.

Essentially, methaphobics are the kind of people that won't be satisfied until they hurt someone on the program.
Methaphobics have this itch and can't scratch it because people on methadone will overcome these hostile actions
and words made by these foolish and asinine individuals and organizations.

I urge all people on methadone to be knowledgeable about the methaphobia concept. It is up to each person on
methadone, worldwide, to be educators and to join in the struggle to end the ignorance that perpetrates
methaphobia.
                                  Stigma: The Invisible Barrier
                                               by
                          Herman Joseph, Ph.D. and Joycelyn Woods, M.A.




    Herman Joseph, Ph.D. is a member of NAMA's Advisory Board and has been involved in methadone
    treatment and research since it's beginning. This article is excerpted from Dr. Joseph's dissertation on
    stigma. Joycelyn Woods, M.A. is Vice President of NAMA and has a graduate degree in neuroscience and
    has worked in the field for twenty-five years as an advocate, clinician and scientist. Joseph, H. and Woods,
    J. 1995. Stigma: The Invisible Barrier. The Ombudsman (Spring/Summer) Nos. 3/4: 1.




Methadone maintenance treatment has been subjected to professional trivialization and misunderstandings, has
consistently received sensationalized negative media coverage and been the target of widespread community
opposition.

Methadone patients are perceived as addicts: weak-willed, unemployed, untrustworthy and dysfunctional. Employed
stable patients whose lives have been saved by enrollment in methadone treatment have been forced to conceal
their status as methadone patients from members of their families, friends and employers for fear of losing their
jobs, social ostracism and stigmatization. They are hiding a "dirty secret."

Addiction is perceived as being self induced, rather than the result of injury or an inborn problem beyond the
individual's control. This impacts methadone patients -- in terms of feelings of self worth and esteem and the social
perception of addicted per sons. Stigmas that are perceived as the direct result of a person's behavior are the target
of social hostility and rejection.

Irrespective of the intentions of the critics, the ultimate effect of the criticisms stigmatizes patients: the "deviant
rehabilitative therapy" has become a "rehabilitation without honor."

The stigma of heroin addiction has been transferred to methadone. The addict has traded the heroin monkey (drug
hunger) for the methadone gorilla (social control).

The labeling of methadone patients as methadonians and methadone addicts, vitiates the attempts at normalcy. The
accomplishments of methadone patients belie the labeling.

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 Patients Speak

"I go to meetings in the community and would like to participate more politically. I was asked to consider running for
political office, but I am concerned about reporters finding out about my past. I do not want to embarrass my
children."

"It's the media. Every time I read something or see a TV show about methadone and see these professionals -
psychologist and sociologist types - they call it substituting one addiction for another. This is not true - they don't
know what they are talking about. When the public hears substituting they don't understand the difference between
heroin and methadone. Here I am a very successful businessman with a wife, son and a beautiful home - methadone
for me is medicine.
"We told our teenage son he doesn't like it. He feels it is our fault. The only people who know we are on methadone
are in my family - some work for me but the other employees don't know. I don't know about detoxing. This is a
medical condition. My wife d etoxed and had to go back on."

"I do not tell local doctors in my community that I am on methadone."

"I have my own business. My husband is in sales. I am happily married with two beautiful daughters. The babies
were born within the last seven years. I was maintained on methadone during my pregnancies. I took off time from
work after the births of my daughters. The girls are doing well, there were no problems with withdrawal or other
effects."

"No I don't see myself as being weak willed or having a character disorder. Methadone: A Technological Fix (Nelkin,
1973), "Methadone - It Takes Your Heart" (Hunt, Lipton, Goldsmith, Strug and Spunt, 1985-1986). Who writes this
stuff? Some Ph.D.s wrote this doesn't impress me! It is not true. Of course it is stigmatizing. This gets me very
angry. I am currently on 20 mg/day. I feel comfortable at that dose, no withdrawal or sleeping problems. I have no
intention of getting off methadone. I have lived a wonderful life and I see no reason to get off."

"I have my own home, but nobody in the town where I live knows I am a patient. My family knows but they do not
accept it even though I am very successful more successful than my brothers who have technician jobs. They only
want to know when I am getting o ff. They have never told me that I am doing great. I am on 90 mg, feel fine, don't
get high and am able to do all types of work without any effect from the methadone."

"Who knows that I am on methadone? My wife is the only one. I am the most successful person in my family and
belong to social clubs in my community. All of this can be destroyed if they knew I was on methadone. I have two
teenage children they do not kno w."

"Everybody in my family knows I am on methadone. My family has only seen the good that methadone has done.
They remember the stealing when I was addicted to heroin. They can't understand the negative publicity."

"On methadone I was able to complete college and take professional courses. I now have a wonderful job which
demands a lot of responsibility, education and skill. My boyfriend is also a patient and an engineer. I have friends
who are on the program. Many of them went through therapeutic communities and 12 step programs only to
relapse."

"Methadone has allowed me to live without compromising my ethics or values, which may not have been possible if I
continued to use heroin. This is very important to me."

"Unfortunately, there is a lot of stigma against patients and ignorance about methadone in the health professions. I
am considered very competent and skilled. Physicians trust me since in my specialized field. This has given me a
great deal of satisfaction. I work with highly skilled professionals. If they knew I was a methadone patient I would
either lose my job or be restricted in my duties."

"I have an excellent safety and attendance record. I also have received good evaluations. For the past 20 years I
have had to take urine tests about every two months (120 tests). They're all clean. I've never used drugs since I've
been in the methadone pr ogram. I never got a promotion and I think it was because of the methadone. They have
no complaints about my work. My children do not know."

"Practically everybody I know knows I am a diabetic, but not too many people know I am a methadone patient. I am
a little ashamed of this dependency. I tell people I am taking insulin what's wrong with me taking methadone to stop
killing myself."

"I work in management and put in very long hours. I am also registered in graduate school for my masters. Recently
I told two close friends that I was on methadone. I tried to explain it but they now insist that I try to get off. Before
they knew I was a patient, they accepted that I was tired after a day at the office and school. If I yawned or went to
sleep early this was normal. Now if they see me yawning or going to sleep early it is not accepted as normal but that
the methadone is causing me to yawn and be tired. Before I was napping, now I am nodding."
                             Methadone Treatment in New York
                                                   by
                                  Michael Grenga and H. Spencer Nelson

    Michael Grenga and H. Spencer Nelson are members of NAMA and patients from programs in upstate New
    York. Grenga, M. and Nelson, H.S. 1995. Methadone Treatment in New York. The Ombudsman
    (Spring/Summer) No. 3/4: 5-6.




When the first methadone programs were set up in this country, one of the biggest factors in allowing these
programs to exist, was the rationale that an addict, once supported with a daily dose of methadone, would refrain
from a lot of criminal activity. Also, it was felt, the addict would start to take a productive role in society and would
pursue gainful employment and/or schooling. While the programs and agencies involved were new to the needs of
methadone patients and probably made a lot of mistake s in the learning process, it was never felt that this was a
planned objective of treatment.

The programs stuck quite close to the basic needs and wants of the patient. That is, that we needed to be
encouraged and eased back into society. We needed an affordable and adequate dosage of methadone on a daily
basis, and clinic hours that were reasonable and of a long enough time frame to enable every patient to get their
medication. These were the basic tenets of methadone maintenance treatment. This philosophy predated methadone
treatment in the U.S.A. This was the philosophy in England for the two decades preceding the experiments of
Nyswander and Dole......"Lets give the addict enough drugs to take away the need to commit crime to get these
drugs." However, somewhere along the line, we -- the patients -- feel that these basic principles have been
overlooked. Forgotten in the virtue of the moral entrepreneurs who believe that there is only one "good" way to live -
- their way!

The majority of clinics in New York have tended to gild the lily with expensive counseling and clinic costs that are
usually way beyond the means of the average methadone patient. Clinic hours are clearly designed to suit the hours
of the average hospital executive; they just aren't flexible enough for a person who works shifts. We know of several
patients that have lost good jobs because of this and the distance traveled to the program. This aside, the majority
of methadone patients improve their heal th and social status with methadone maintenance while a large minority
are clever enough to manage a system of bureaucracy and regulations and to make methadone maintenance work
for them. So well that they have turned themselves around and came off of wel fare and hospital charity. What
happens? One would hope, indeed -- expect that the patient would feel good about this and go on with a happy and
productive life. Unfortunately, the reality is often times a lot different.

Having come off the protection of welfare and medicaid and medicare, the patient is often faced with the daunting
prospect of paying for services that they cannot nearly hope to meet. Particularity the so-called working poor which
constitute a large number of methadone patients who are struggling to make ends meet. These people earn just
enough to disqualify them from agency help, but not enough to pay the bills. Faced with this prospect, a lot of
recovering addicts particularly single mothers and fathers, go back on the welfare rolls. The myopic eye of the press
often picks this up as a deliberate character flaw of the addict and as a conspiracy to defraud the federal
government. In New York the concept of rehabilitation has become low priority. Methadone programs receive more
money for patients on welfare receiving medicaid and some programs even refuse to accept "a paying working
patient." Programs have numerous social workers on staff, but no vocational counselors.

In the 1970s over 65% of the methadone patients in New York State were working (55%), going to school (5%) or
full time home makers (5%). Today that has dropped to 28%! Why? Well, one could argue that HIV infection has an
impact, but most methadone patients that are HIV+ are asymptomatic. They can and probably should work at least
part time, but no one encourages them. One could also argue that many of the semiskilled industrial jobs that
employed many methadone patients have left the city and state. But successful addicts (and most methadone
patients were successful addicts or else they would not quality for treatment) are clever and will find ways around
the stigma and discrimination to work. They did it in the past, so why not now. The answer is simple -- they are not
encouraged by their programs to work. Programs prefer that they remain on welfare so that they receive top dollar
for their treatment. The proof is in the fact that very few clinics have hours conducive for working patients and in Ne
w York City, where about 28,000 patients reside the Late Clinic for working patients was closed by Beth Israel
Medical Center with no alternative. Also, After Care slots have been and continue to be reduced throughout the state.

What can be done about these concerns? Are we undoing the progress we have make in the field of addiction by
pricing it out of the average patients grasp? In the last issue of The Ombudsman there was an article that mentioned
the work that was being done so that methadone could be obtained from physicians in their office (p 12, In The
News, New York City). This would make it a lot easier for patients that need the drug to get it without resorting to
the geographic location of a few programs. Also, many patients find that the restrictions of a program eventually
hinder their progress in society and some methadone patients may respond to the more individualized treatment of a
physician in their office.

Finally what about the terminally ill patient? Why should someone that is critically ill be forced to run the daily
gauntlet of a program when they could be treated by the same physician who is treating them for their illness. For
many terminal conditions and especially AIDS, stress is the killer, and I can't think of anything more stressful than a
methadone program.

There is a great deal of need out there and certainly room for change to suit the needs of a diverse population. Are
we up to the challenge?




                                         In Memory of John Mordaunt

John Mordaunt was a tireless advocate of HIV infected drug users. He was the first HIV+ drug user to be shown on
national television in his country, England. Mordaunt helped to found the British advocacy organization for HIV
infected drug users called Frontliners and was active with the European Interest Group on Drug Policy, a European
umbrella organization for user groups. In spite of his illness Mordaunt accomplished an incredible amount of work as
a champion for the civil liberties of drug users. In 1990 upon learning of NAMA Mordaunt wrote to us with his
encouragement and how methadone had given him the chance to have a normal life. The letter was published in a
small newsletter that proceeded The Ombudsman, called NAMA New s & Notes.

John Mordaunt devoted the last years of his life to making changes, his energy and presence will be missed.

J.W.




                                         Remember Us!
               The Writer Asks to Have Their Name Withheld for Fear of Retaliation

Imagine -- a young woman is in the Ladies Room stall, the door is being held open by a worker whose job it is to
observe the woman (any female patient) give a urine sample. This sample is tested for any drugs that are against
the rules of the methadone clinic.

The young woman is balanced over the toilet in such a way for the attendant to view the "urine stream." Splash! A
small bottle falls out of the woman's vagina into the toilet. She looks at the worker with tears welling up in her eyes,
"Are you going to tell the doctor?" "Honey, you better believe I'm gonna tell someone, what do you think you are
doing?"

Think of the humiliation, of the desperation for the young woman to even try such a thing. How many times had the
poor suffering woman prepared herself like this before, as it's the rule for random urine takes! I can't get it out of my
head. It's so pitiful and so typical of the desperate things an addict feels forced to do. What I see and how I feel, is
this woman went to the clinic to get help. Somehow, somewhere, something must be wrong. If she was getting the
right dose of methadone, if her counselor was effective, if programs did not discharge patients for displaying
symptoms of their disease, this would not happen. Am I right? I feel that I am. If the dose of methadone is adequate
then the addict should not be having "hunger" for a drug. Also, if the dose is correct then a person would not be able
to feel the effect of the illegal drug. It would be a waste of money. The "high" is gone!

I bring this up as just part of a story, but to show that having one clinic to treat addicts with methadone (300
patients) is for a city of this size (Columbus, Ohio) not enough. Also, the human side of this sorry story is the clinic
that is here has been here for more than 15 years and there are just a few employees that have been with the clinic
from the start. One could say "Bless them for their commitment" or, one could say that they have become hard and
uncaring -- the environment of care has go ne long ago. They seem to only be counting the days until they can retire
and get away from these disgusting and manipulative patients. It's just an awful situation here in Columbus. I don't
know how to bring help here except like this, in writing to anyone that might try to change things here.

This is just one small picture. If anyone can offer ideas or help, there are many here that would thank you.

Please keep this city in your thoughts. Remember, the patients that are treated like they are less than human by the
clinic, or the active addicts who never have the chance to be treated badly by the clinic.

Editor's Note: This column, "Remember Us!" will become a feature of The Ombudsman to provide a vehicle of
expression for the many oppressed patients afraid to speak out. "Remember Us!" will tell their story.

J.W.




                                        Cartoon What Starts With a P!
                                         TRIPS No Longer Operating

This past spring TRIPS the project that assists methadone patients to find an alternative site while traveling was
closed. It happened very quickly and as you would expect created problems immediately. NAMA began receiving calls
as early as March from patients trying to locate a program in the area that they were traveling to.

Several patients called because their program had inferred that finding a site was the responsibility of the patient.
Other patients called us after being treated badly by the alternate site program. One patient was treated rudely by
staff while inquiring about the feasibility of be medicated at the program. Another reported that upon arriving at the
alternate site the program did not live up to their word.

It is far better if you can take your medication with you. Then you will not have to worry about programs going back
on their word and other problems that patients often encounter. However, if you must be alternate sited you have
two options. You can call NAMA or the National Clearinghouse for Alcohol and Drug Information (NCADI). The
numbers are listed below.

And, if you have a bad or a good experience at a program that you are alternate sited to, please let us know as we
will probably begin to develop a data base.




NAMA Number (212) 595-NAMA
NCADI 1-800-SAY-NO-TO(DRUGS)
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