Stigma (STIG-ma): noun {From the Latin for “mark” or “brand”}
- a scar left by a hot iron
- a mark of shame or discredit
-
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 awar e 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 t ake
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 resea rch 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 b asics 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 co
ntempt. 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 n either 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 mod ality.
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 p arents 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 righ t, 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 raisi ng 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 modalit y 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 demonst rated 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: Int ernational 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 Nadelman. 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 mai ntenance 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. Bet h 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 M anagement: 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 Eat on’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, “St arting a Methadone Advocacy Group”,
authored by Joycelyn Sue Woods, Hector V. Maldonado, LuisTorres, Jeffrey
Millman, Peter van der Kloot, and myself. It will be published in the inaugural
issue of the Journal of Maintenance in the Addictions. Dr. J. Thom as 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!
