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Methadone Today
Volume III, Issue XII (December 1998)
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One Patient's Story - Bobbi Deschene-Dolloff
Attention: Michigan Medicaid Patients
- Nancy Rose (DONT Secretary)
Genetic Roots of Addiction - NIDA Notes Staff
Writer June Wyman
Mandatory Counseling - Dr. Marc Shinderman
Attention: Pregnant Methadone
Patients in Michigan - by Beth Francisco
Doctor's Column - Letter
from General Practice Doctor
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One Patient's Story
by Bobbi Deschene-Dolloff
Reprinted with permission from the publisher for one edition
only
Journal of Maintenance in the Addictions, T.J. Payte, MD, Ed.
Haworth Medical Press, Vol. I, No. 3, 1998, pp. 83-87, Binghamton,
NY
I would like to tell you about a methadone clinic somewhere in New
England and my personal struggle there in trying to obtain even a modicum
of dignity and respect from them. I should perhaps also mention that they
are the ONLY clinic around for a radius of about 40 miles! This is
not a pretty story, and it probably exemplifies some of the most common
problems that patients have to deal with daily at their respective clinics.
It started in September of 1997 when I moved here because my husband
of seven years chose to pick up alcohol and drugs again. I have over five
years of solid, dedicated, uninterrupted and progressive recovery right
now; I was NOT willing to jeopardize it for any reason--least of all financial
security. Thus, I left him. Finances and a desire to be close to
my child compelled me to come here to share an apartment with my youngest
daughter.
I came fully expecting to have to "start over" to some degree
at my new clinic; it's a common indignity that is forced on most methadone
patients when they transfer clinics. In other fields of medicine,
a patient's record is accepted as truth when they move and is used as a
baseline in continuing treatment; in methadone maintenance, a patient AND
his record are automatically considered suspect! That patient must begin
ALL again to "prove" his worth, his integrity and his veracity! It
is demeaning, insulting and completely unfair but it IS an accepted FACT
in many places. I was tired of having this happen to me, especially
since BOTH times I've faced this situation it was because I moved in order
to either protect my recovery or help it to progress!
Thus, when I arrived at "Local Methadone Maintenance Program"
(LMMP) and was told by their DOCTOR that I was "just another junkie who
had to prove herself," I balked! I knew that I was in an atmosphere
of ignorance where human dignity was NOT likely to be a priority item for
the patients. How right I was! That one statement best exemplified
the staff's whole attitude toward both treatment and patients. I
was expected to comply with rules there that would seriously jeopardize
my ability to survive financially, with no recourse or compromise!
And it was this final indignity that brought about a determination in me
to FIGHT back finally, rather than just conform again and adjust myself
to the pain, humiliation and injustice. You see, these clinics
have the power to blackmail us into almost ANY compliance; they have our
medication to use as a "hostage!" This time, even that did not matter to
me. Enough was ENOUGH!
I began by choosing NOT to attend the group therapy sessions that
were considered mandatory for all NEW patients but NOT for people with
three years or more of recovery IF, and ONLY IF that recovery had been
obtained AT LMMP! My five years meant NOTHING to them, and as a result,
I finally found myself facing a DETOX! Mind you, I'd missed NO counseling
sessions, had NO dirty urines at ALL for over five years, had NO missed
doses, or any other infractions of their rules--just missed groups. To
attend would have meant losing income that I desperately needed since I
earn my money providing child care for two of my daughters and it does
NOT pay well. The youngest was attending a nursing assistant course in
order to improve her own circumstances as a single mom. To NOT be
there to help her as I'd promised would have forced me to violate the most
important pledge I'd made to myself in recovery--NEVER to let my children
down again because of my addiction. Even THIS meant nothing to LMMP,
and I was told that I'd face detox if I did NOT attend these superfluous-to-me
groups!
During the five months on LMMP, I had my medication threatened
several times to the point of actually being told that I would NOT be medicated
at ALL for an entire WEEKEND if I did not bring them a chest x-ray within
36 hours! A faulty spit-test for presence of alcohol nearly prevented me
from receiving a dose on another occasion, despite color results not even
ON THE CHART and a clear notation in my record that I have never USED alcohol.
This clinic has a history of pretty much doing as they see fit to their
patients (they won't even refer to us as PATIENTS! We are CLIENTS,
a word MANY addicts now find offensive thanks to education from NAMA about
the implications of semantics), because no one up here even knew that advocacy
existed! The patients were terrified of losing their medication and thus
"obeyed" unfair, unethical and deleterious rules that they felt they had
NO way to combat!
When I arrived here in Newtown, I was already a NAMA representative
for New England. LMMP couldn't have cared less about that--an attitude
that I KNOW has changed drastically now! My fight began with contacting
the HES Officer in Capital City. At first there seemed to be little
help forthcoming from that office; recently, though, he has done all that
he could to assist me with my situation, even going so far as to forward
my complaints to the Attorney General's office! I also involved NAMA in
this fight for dignity and self-respect. The information and assistance
coming from both Joycelyn Woods and Alice Diorio of VT were invaluable!
In fact, Ms. Woods forwarded my story on to Dr. Vincent Dole, and this
wonderful man took time from his own schedule to PERSONALLY call LMMP and
plead my case. They actually had the effrontery to completely ignore the
advice of the father of methadone maintenance. That is unparalleled
ignorance of the first order! I am still in awe of the caring and
kindness extended to me, just another addict, by this incredible man.
I find myself humbled and grateful beyond the ability of words to express!
He was actually the FIRST person to try to assist me!
My quest for justice then led me to Mr. Mark Parrino, the president
of the American Methadone Treatment Association, and HIS help was decisive
in this battle! He provided invaluable assistance, as did Dr. Ethan Nadlemann
and Ms. Holly Catania of the Lindesmith Center of NYC. Their support and
immediate action on my behalf were turning points in the battle against
the injustice I faced. Ms. Catania became my legal counsel and not
even LMMP wanted to face off against the Lindesmith Center! I can
not stress to you enough the absolute NECESSITY of fighting back against
arbitrary, deleterious, and even destructive RULES! You CAN win;
there are federal and state regulations that are written to assist us,
the patients, in standing up for our rights. We are human beings
deserving of dignity and respect in our fight against the deadly disease
of addiction!
If this clinic had had its way with me, I would now be in the
process of an unjust detox--probably forced back to the use of illegal
drugs--after more than five years of exemplary and well-documented recovery!
I fought my way back from homelessness, heroin and cocaine addiction, and
prostitution to a life of self-worth involving both familial and civic
responsibilities. I did this with and because of methadone maintenance!
NO methadone program has the right to humiliate and denigrate its patient
population; NO methadone program has the right to write its OWN little
set of rules and regulations that make recovery more difficult than it
already is. This is NOT what MMTP's are for; they are meant to bring addicts
IN from the street, not put them back out there simply because they demand
respect and recognition for their struggle in recovery! I have never
been on any clinic so set upon micro managing its patients' very lives!
LMMP is desperately in need of a complete cleaning out and revamping
or retraining of its staff and a thorough reassessment of what its goals
are meant to be. Are they here to run a person's life 24 hours a
day? Or are they supposed to be assisting patients with their rehabilitation
back into a normal life? Something is very, very wrong with a program that
spends so much time on NEGATIVE results and on bringing patients to heel!
And ANY methadone program that feels it is justified in DETOXING a long-term
chronic addict with a history of recovery as exemplary as my own has a
SERIOUS problem that desperately needs to be investigated!
My absolute refusal to allow my recovery to be IGNORED brought
me into almost immediate conflict with the staff. I NEVER have been
considered a NON-COMPLIANT patient in my entire history on MMTP's, so why
was I so labeled here? My "non-compliance" was solely in the area
of my refusal to be subjugated and treated like a "new junkie off of the
streets." I expected and demanded some recognition for my years of
recovery, and, in the end, I have won it!
What possible MEDICAL reason could there be for expecting someone
with a PERFECT record of recovery to "begin all over again as if they'd
just put down the drugs yesterday"? NONE! The only reason for something
so vicious being directed at a patient is to subjugate them, to teach them
FEAR of the program and its POWER over their life and their recovery.
I could have lost my very LIFE here at LMMP if I'd not known how to fight
back! This is a lesson that we ALL need to learn--HOW to fight within the
system despite the FEAR that loss of our medication can precipitate.
Until we do this, until we are willing to stand up and FIGHT BACK, they
will continue to "control" us, denigrate us, deny us the basic DIGNITY
that any human being is entitled to! I finally became so sickened
by the control of programs over my life that I engaged in a battle that
I would never have believed POSSIBLE only two years ago!
And, in the end, I have won! There ARE people and agencies out
there who CARE about our struggle. I was no longer willing to act
apologetically and allow a clinic to make me feel as if I DESERVED to be
treated like a JUNKIE! I am a recovering addict with a five-year
history of strong and dedicated recovery. And I WILL be treated as
such. Fighting together can make a MAJOR difference in our lives,
as Joycelyn Woods has been telling us repeatedly for quite some time!
I would highly recommend that anyone who is presently being discriminated
against at their clinic contact NAMA for advice. Only when we take up the
gauntlet ourselves and fight back for what is ours by right-DIGNITY-will
we be taken seriously and allowed some recognition as human beings with
a disease, and NOT "junkies who need to be controlled"! Dr. Dole was recently
quoted as saying that we patients NEED to be heard in relation to our treatment.
Well, unless we speak OUT, we will never be heard!
The result of my challenge has brought me recognition and respect
at LMMP. I have already SEEN changes in their policy that are a result
of my battle with them, and these changes are of benefit to ALL patients!
This is my legacy to the recovering addicts presently in treatment here,
and it is one that I am extremely proud of! Together, we CAN make a difference!
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ATTENTION: MICHIGAN MEDICAID PATIENTS
by Nancy Rose (DONT Secretary)
By the time you read this, several changes will have occurred with
regard to how Medicaid in the state of Michigan will be paying for substance
abuse treatment. This will affect methadone maintenance patients who use
Medicaid to pay for their treatment.
Under the new requirements, as of October 1, 1998, your treatment
had to be "authorized" by what is called a "Coordinating Agency" (CA).
Each county usually has its own Coordinating Agency. In some cases, several
counties may share a Coordinating Agency.
Each Coordinating Agency has its own set of requirements; therefore,
Medicaid patients may have been affected in various ways, depending upon
the county in which they live.
There may have been, or probably will be, disruptions or changes
in your treatment. Some of the things that were affected include
but are not limited to:
-
your length of treatment (how long Medicaid will pay for your treatment)
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where you go for treatment (you may be required to attend a clinic in the
county in which you live)
If you haven't been affected yet: The clinic you presently
attend should be able to tell you where your Coordinating Agency is located.
They will also let you know what you need to do and when to do it.
Some counties were giving "grace" periods, ranging from 30 to 90 days,
extending past the first of next year. If you live and attend a clinic
in the same county, hopefully you will only have to get a referral form
from the CA. If you live in one county but attend a clinic in a different
county, you may be required to transfer to a clinic in the county where
you live. If you live in a county that has no methadone maintenance
treatment clinics, the CA could send you to a clinic in another area.
If there are several clinics in the county where you live, the CA may STILL
tell you WHICH clinic you can attend, even though this may disrupt your
treatment.
We, at DONT, are not happy with these changes. We do not
like the fact that some patients who have been in treatment at a particular
clinic for years (and doing wonderfully), are being forced to transfer
to a different clinic because of Medicaid's new requirements. We
do not like having an anonymous person at a CA, who may know nothing about
methadone maintenance treatment, deciding how long we can or cannot stay
in treatment! We have received such reports from patients, including one
patient being forced to change to a clinic at a much farther distance than
his present clinic! We've also heard that several patients were told they
had to choose between two clinics when their county actually has several
clinics.
It seems that methadone maintenance patients and Medicaid recipients
are consistently trampled on. We are not sure what we, as patients,
can do about these changes in Medicaid, but you should write and tell DONT
how you have been affected (see address on back page). You may also
want to write to your legislators telling them how this has affected you
and/or your treatment (this is a 2-year trial at this point).
As we find out more about Medicaid, we will inform you in subsequent
issues of Methadone Today, which will be available by subscription only
after the January 1999 issue (ask your clinic to subscribe at our very
reasonable rates). There may be more "major" changes coming up with
Medicaid in the next 12 months.
END
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Genetic Roots of Addiction
by June Wyman NIDA Notes Staff Writer
At a major scientific meeting, a scientist announced to a spellbound
audience that he had identified some of the genes associated with drug
abuse. He described the mutations in those genes that lead people
to abuse marijuana, heroin, cocaine, and other drugs. His landmark
discovery brought scientists a giant step closer to dramatically curbing
drug abuse. Although some drug abuse researchers are predicting this
tale could come true as early as the next five to ten years, for now it
is fiction.
Currently, scientists agree that genetics is involved in drug
abuse, but the consensus ends there. Many genes are thought to act
together to make someone more likely to abuse drugs. But exactly
which genes those are and what they do are the subject of a lively scientific
debate. Further, since drug addiction appears to be the product of
both heredity and environment, the roles of the two are hard to separate.
At NIDA, a genetics Workgroup is trying to sort out these issues.
The group's mission is to assess the state of the science, identify research
gaps, and decide what studies are needed to untangle the genetic roots
of addiction. Its members consult with experts from around the country
to get advice on what directions NIDA should take, according to Dr. Jonathan
Pollock of NIDA's Division of Basic Research, who chairs the group.
Meanwhile, amid the debate, new scientific information is emerging,
giving scientists leads that may generate new strategies for drug abuse
prevention and treatment.
Family Resemblances
Whether or not someone feels good after smoking marijuana is strongly
influenced by heredity, report NIDA-funded grantees from Harvard Medical
School. Their conclusion comes from a study of 352 pairs of identical
male twins and 255 pairs of fraternal male twins, all of whom had smoked
marijuana more than five times in their lives. Identical twins have
exactly the same genes, while in fraternal twins about half the genes are
identical.
Dr. Ming Tsuang, Dr. Michael Lyons, and their colleagues compared
the identical twins' answers to a set of questions about how good or bad
they felt after smoking marijuana. The identical twins' answers were
significantly more alike than those of the fraternal twins. The researchers
interpret their data to mean that genetic factors have a significant impact
on whether someone will enjoy marijuana.
It is this kind of research that begins the search for drug abuse
genes. Although studies of twins and families cannot pinpoint specific
genes related to drug addiction, they can look closely at people who share
a drug abuse disorder and a common genetic makeup. "Twin studies
are promising because they ask exactly what is heritable," says Dr. Harold
Gordon of NIDA's Division of Clinical and Services Research. Then,
using blood samples, molecular biologists can examine these individuals'
genetic material, or DNA, to locate shared genetic characteristics, he
says.
Likely Candidate Genes
Meanwhile, geneticists are homing in on particular drug abuse genes--a
daunting task, given that humans have around 100,000 genes and of those,
more than 40,000 may be expressed in the brain, where drugs of abuse act.
Still, many scientists are optimistic. "We've known for a long time
that genetics is an important part of an individual's response to drugs
of abuse," says Dr. John Crabbe, a NIDA grantee at Oregon Health Sciences
University in Portland. "What we're able to do now is get our hands
on specific candidate genes."
Of particular interest are genes that control the brain chemical
dopamine, which is associated with movement and pleasure, including pleasure
from drug use. "Genes in the dopamine circuit are likely candidates,
and most of these have been examined at least to some degree," says Dr.
George Uhl, chief of DIR's Molecular Neurobiology Branch. This work
is being done to mice, which have critical genetic similarities to humans.
Also, scientists know more about the genetic makeup of mice than that of
any other mammal except humans.
The scientists conclude that in mice Nurr1 is critical for normal
development of dopamine-containing nerve cells, and they speculate that
development of those cells may be abnormal in people who are vulnerable
to substance abuse. "These people may be abusing drugs in an attempt
to counteract the deficiency," says Dr. Hoffer, who did the study with
scientists from the Karolinska Institute and the Ludwig Institute for Cancer
Research, both in Stockholm.
So, the evidence from animal studies is compelling. But
finding equally strong evidence in humans for a genetic influence on drug
addiction has proved trickier. Although a number of genes have been
implicated, none has been clearly linked to drug addiction.
At DIR, Dr. David Vandenbergh, Dr. Uhl, and their co-investigators
are looking for genes that may be involved in drug abuse by comparing DNA
from drug abusers to that of people who do not abuse drugs. So far
the strongest candidate is a variant of a gene that tells the body to produce
an enzyme called COMT (catechol-o-methyl transferase). Widespread
throughout the body, this enzyme helps break down and inactivate dopamine
and related substances. COMT occurs in two genetically determined
forms: low activity and high activity. "We found that the high-activity
forms of the gene and the enzyme are found more often in drug abusers,"
Dr. Vandenbergh says. If further work confirms this finding, then
drugs that lower COMT activity could be tested as treatments for drug addiction,
he says.
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Mandatory Counseling
by Dr. Marc Shinderman
Appropriate counseling with qualified counselors who focus on issues
that patients want (or need) to address, using therapeutic skills that
relate to the problems, is always desirable. Conversely, talking about
substance abuse when either there is none or what is really needed is a
dose increase (that never comes), gets old, fast.
Weekly or more frequent mandatory counseling for "all patients,
forever" is clinically, medically, ethically and economically idiotic.
It is one of the main things that makes patients dislike and distrust counselors
and the clinic. They know that the practice has nothing to do with their
needs.
It serves some other purpose. Such "Counseling" takes place because
it can be billed for, put down on paper to satisfy bureaucrats, or fills
the needs of staff who "like to counsel."
It is most obviously useless to longer term patients who are functioning
adequately. Worse, it is irrelevant to all patients when the paradigm
for counseling in a clinic (e.g., talking about the patients behavior problems
that predictably result from underdosing and/or absurd clinic rules) and
the needs of the patients who actually need some kind of service do not
match, anyway.
Real services or valuable counseling could be rendered, for example,
in regard to treatable psychiatric problems, parenting skills, crisis intervention,
vocational issues, medical issues, and so forth. Few of these are "weekly
and forever" items, and even fewer can be adequately addressed by
talking to a high school graduate with a Chemical Dependence certificate
or a counselor who thinks that the goal of treatment is to get off MMT.
While all of this is changing for the better at the federal level,
state regulation, certification agencies, insurers, funders and clinic
administrative staff can perpetuate mindless requirements, anyway, because
they have the power to do so.
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