Questions? Comments? Speak out:  Order Newsletter in print: 

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

To Home Page

 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!
 

To Home Page 

 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)
• where you go for treatment (you may be required to attend a clinic in the county in which you live)

 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.

To Home Page 

 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

 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

 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.

To Home Page 

 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.
 

To Home Page