Volume III, Issue XI (November 1998)
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Do You Know Your Rights? - Kristi Wyatt, Rights
AMTA Conference, Sept. 1998, New York - Nancy
Rose (DONT Secretary)
NAMA Policy Statement Joycelyn Woods
Doctor's Column -
Methadone and Pregnancy in Detroit
Cartoon - You don't look like you're on
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Do You Know Your Rights?
Kristi Wyatt, Rights Advisor, Parkview Counseling Center
As a Recipient Rights Advisor who works in a non-direct
service capacity for a substance abuse outpatient methadone treatment program,
the first question I am always asked is, "How can you be fair when you
work for the company I'm filing a grievance against?" or "I don't want
to get anyone in trouble," or "I dont want to be harassed." As a
rights' advisor, my job is to investigate all the facts to determine if
a recipient/consumer or patient rights have been violated according to
title 42 Part 2 of the Code of Federal Regulations or otherwise known as
42 CFR. No patient should have a fear of retaliation as a result
of filing a grievance, because this form of intimidation would be a violation
of your rights.
Upon entering treatment, all recipients should be provided with
a "Know Your Rights" pamphlet or literature on the rights' process.
However, most recipients receive this information upon intake, and most
fail to read it.
A brief overview of The Know Your Rights pamphlet:
As a Recipient/Consumer/Patient you have the right to know:
how much the service costs and how much you must pay.
when violation of program rules could lead to discharge.
information on any drugs used in treatment.
if you or any information about you will be used in any research experiments.
YOU HAVE A RIGHT TO:
all civil rights guaranteed by state and federal law.
suggest changes in services.
expect the treatment center to look into your complaint.
help establish your own treatment plan.
to refuse treatment services and be told what will happen if you do.
talk with your own doctor or lawyer.
obtain a copy or summary of your patient record unless the program director
recommends otherwise (if denied, you have a right to know why).
YOU HAVE THE RIGHT TO EXPECT THAT A PROGRAM'S STAFF WILL NOT:
abuse or neglect you.
give out information about you without your permission (a signed release
require you to be part of any research if you don't want to.
"If you are in a hospital, halfway house, or other live-in setting,
you have some additional rights" (See your Rights Advisor).
You are responsible for payment of your bill.
You are responsible for knowing if your insurance company will pay for
part or all of your bill.
You are responsible for providing clear and accurate information about
You are responsible for following rules of the program you attend.
You are responsible for being considerate of the rights of others whether
they are recipients of services or staff.
If you feel your rights have been violated at the program you
attend, please talk to the rights advisor. If the problem cannot
be resolved with a simple mediation, then you can utilize the formal complaint
process and request the "901" form.
Upon submitting your complaint to the rights advisor, your
complaint will be investigated. You should receive a written response
within 30 working days.
If you disagree with the investigative findings, you may appeal
to the Regional Rights Consultant (you may contact your Program Rights
Advisor or check the Recipient Rights Poster for the Regional Advisor in
your program's area). The consultant will conduct an investigation
and submit a written response within 30 days. If you disagree with
the regional findings, you may appeal to the State Rights Coordinator.
Michigan Recipient Rights Coordinator
Michigan Department of Community Health
Center for Substance Abuse Services
3423 N. Logan/Martin Luther King Blvd.
P.O. Box 30195
Lansing, MI 48909
As a consumer of services, you do have rights.
Editor's Note: This applies to all programs. You
should have a poster hanging in your clinic in plain sight that tells you
who your Rights Advisor is at the clinic and at the regional
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AMTA Conference, New York, Sept. 1998
by Nancy R. (DONT Secretary)
I had the wonderful opportunity to attend my first AMTA Conference.
The American Methadone Treatment Association (AMTA) holds a conference
about every 18 months in a different city around the US. AMTA is a group
of professionals (physicians, psychiatrists, psychologists, social workers,
counselors, nurses, etc.) who work in the field of methadone maintenance
treatment (MMT). Anyone may attend the conference for the price of the
registration fee. The conference ran several days--September 25 through
29, 1998-- and this year it was held in the Marriott Marquis Hotel in Manhattan.
The conference consisted of numerous workshops on various topics:
"Hot Topic Roundtable" discussions, speakers, exhibits by various companies
and professionals, posters, special meetings, luncheons, and a special
"Awards" Banquet--where the Nyswander-Dole or "Marie Award" is presented
to various professionals. The award, of course, is named for Drs. Marie
Nyswander and Vincent Dole, the originators of MMT in this country.
The First National Methadone Advocacy Conference:
I can't possibly cover everything, so I'll try to cover the most
important and most informative parts. On Saturday, the first day
of the conference, methadone patient advocates had their OWN special meeting,
The First National Methadone Advocacy Conference. This was one of
the highlights for me personally because I got to meet a good thirty or
more fellow patient advocates from around the United States and even one
fellow from Denmark! I would like to list their names, but since
I couldn't get permission from each and every advocate and because of the
confidentiality factor, I cannot do so.
Joycelyn Woods of NAMA made the arrangements for this advocacy
conference. There were a number of speakers present, including Herman Joseph
(NYS OASAS), Dr. Edwin Salsitz (Beth Israel Medical Center, NY), Dr. Ernie
Drucker (Montefiore Medical Center), Dr. Ethan Nadelmann (Lindesmith Center),
Mr. Dave Purchase (Drug Policy Foundation), a representative of the Harm
Reduction Coalition, and Dr. Vincent Dole himself! When Dr. Dole walked
up to the podium, the audience of mostly patient advocates gave him a STANDING
OVATION before he even began speaking! All of us recognize him as the "father"
of methadone maintenance in this country. Dr. Dole refers to himself
as "the honorary first patient!"
Two women from the Lindesmith Center interviewed patients on audiotape
and took a photograph of those who were willing to talk publicly.
I gave an interview giving my real name and position with DONT, as I (along
with Beth Francisco, Editor of this newsletter) had already made the decision
to dedicate the remainder of my life to make MMT a more positive experience
for the patient and available to all who want it.
Some of the topics of the discussions and speakers included: "Methadone
2000: Advocacy Working for Change", "Supporting the Work of Methadone Advocacy",
"Patients are the Future", and "Stigma and Society", among several others.
The Drug Policy Foundation (DPF), who has given various patient
advocacy groups grant money toward operating expenses in the past few years,
had several announcements. Mr. Purchase said the DPF is requesting
two things of us: they would like one national advocacy organization, and
they want one national advocacy meeting held at least annually. The DPF
is going to issue a "request for proposals" (RFP) concerning grant guidelines.
Mr. Purchase explained they will wait to review all RFP's before making
any changes to specific written grant guidelines.
Also, NAMA had two "working groups" of advocates formed; each
will study "their" topic and report to the rest of us. Patients were encouraged
to join one of the groups and agreed to follow up with each other over
the next two-year period. One group will study "Physician Prescribing,"
and Judith O. was announced as the Chairperson of that group. The other
group will study the new "CSAT Accreditation Guidelines"; Robin R. was
chosen as Chair. The groups will put together and distribute press packets,
among other things.
It was nice hearing from all the speakers (especially Dr. Dole!),
but there should have been time allotted for patient advocates to meet
among ourselves, as important things needed to be discussed, such as organization,
future funding and plans, etc. This was the perfect chance (and the
only opportunity for some time) for a national meeting since this was the
first time so many advocates from all around the country were together
in one room.
The AMTA Conference
Now for the highlights of the AMTA Conference itself. There was so
much for one person to look at and hear and only a few days in which to
do it. So, one had to pick and choose which workshops and other activities
to attend. Luckily, audiotapes were available to order for workshops
Workshops included: "The Right Dose," by Dr. Marc Shinderman who
is on Methadone Today's Medical Advisory Board; "CSAT's Program
Accreditation Project"; "LAAM--A Clinical Update"; "Methadone and the Criminal
Justice System"; "Medical Maintenance" and "Office Based Methadone Prescribing";
"Hepatitis C in Methadone Patients"; "Delivering Culturally Sensitive Treatment";
and many more.
The speakers were too numerous to list but included General Barry
McCaffery -- Drug Czar and Director of the White House Office of National
Drug Control Policy (ONDCP) -- who spoke about the necessity and plan to
expand methadone treatment in the United States. Patient advocate
Alice D. spoke about her efforts to get methadone treatment in Vermont
(one of eight states that still does not have MMT).
In the huge exhibit hall were approximately 50 companies displaying
their products, which included pharmaceutical companies (e.g., Roxane and
Mallinckrodt) with different forms of methadone and methadose (cherry liquid,
clear liquid, powder, tablets, diskettes, etc.), and companies with urine
testing equipment, medication dispensing machines, and computer software
for the various departments in a MMT program. The ONDCP, Harm Reduction
Training Institute, National Institute on Drug Abuse (NIDA), and New York
State's Office of Alcoholism and Substance Abuse Services (OASAS) and Committee
of Methadone Program Administrators (COMPA) had booths with information
There were also bulletin boards with posters and scientific and
medical studies/reports for perusal, including topics such as: "Exploring
Blood Serum Levels as a Tool to Enhance Methadone Treatment Efficacy" and
"Gender Differences Among Patients" and "Comparison of Methadone and Slow
Release Morphine", among many others.
Patient Advocates' Meeting with CSAT:
Sunday evening, all the patient advocates present met with Bob Lubran,
a representative from the Center for Substance Abuse Treatment (CSAT).
We met for a couple of reasons. We planned to ask about the new CSAT plan
for accreditation for MMT programs (questions such as which states will
be affected, what exactly will happen, how does this affect patients directly?).
Also, NAMA presented to CSAT a paper entitled: "NAMA's Methadone Consumers'
Platform for the Year 2000" which outlined some of our proposals for changing
and improving methadone treatment.
Regarding Medical Maintenance, we were told that CSAT is "in the
process of developing medical maintenance programs". Dr. Vincent Dole is
co-chair of the group.
When Mr. Lubran was asked if CSAT would back up patients when
"fighting" unfair rules and regulations of some clinics, he replied that
CSAT doesn't have the power to do that yet. He advised us to go to
our state authority or the FDA to request help, as they still regulate
the clinics. He reminded us that we have a patient advocate on the
CSAT Consumer Council, and the council meets 3 to 4 times a year.
He said if and when the CSAT accreditation system is in place, CSAT would
"work with" the patient advocacy groups.
Mr. Lubran also discussed technical assistance grants and the
possibility of these grants helping advocacy groups in the future.
The meeting went well and was informative.
Important - CSAT's New Accreditation Project and Pilot Study
Now I'd like to explain exactly what the new "accreditation plan"
is all about. I attended the workshop CSAT presented, as it will
affect clinics in several states in 1999, and may affect ALL methadone
programs in ALL states by the year 2000.
Presently, the FDA has oversight of all methadone programs in
the United States. Methadone programs are also regulated by their
individual State Methadone Authority, while only some programs are accredited
by an accrediting agency. What CSAT is proposing is that the entire methadone
maintenance system be transferred from the present FDA system of oversight
to an "accreditation" system under CSAT. What does this mean for patients?
First, as with any federal agency or bureaucracy, it takes time
to make major changes. They like to do "Pilot Studies" first. So, in 1999,
several states will participate in CSAT's Pilot Study. Either four
or eight clinics in each of the chosen states will be invited to participate;
each clinic may accept or decline to take part in the Pilot Study.
Michigan is one of the chosen states. CSAT did NOT announce at the
workshop which clinics were invited, although they did say that most clinics
invited have already accepted.
The clinics that agree to participate will follow new "Guidelines
for Accreditation of Methadone/LAAM Treatment Programs." There are
too many changes to list them all here, but this should explain "all" --
CSAT follows the TIP & TAP books' recommended guidelines and protocols!
One of the specific changes/improvements that I WILL mention concerns "take-homes"
-- after 9 months of meeting take-home requirements (which are basically
the same as the requirements in place now), you'll go to the clinic once
a week and receive six take-homes. Under the present rules, you must
wait three years to apply for once-a-week take-homes. Additionally,
after two years of meeting take-home requirements, you may be able to go
to the clinic ONCE A MONTH and receive 30 take-home doses! I should
mention, though, that within the clinics that participate in the Pilot
Study, only SOME of the patients will be chosen to take part.
Finally, following 1999's Pilot Study, an organization called
CARF will review the outcome with CSAT. At that time, the decision
will be made as to whether the new "accreditation" system will go into
effect "permanently". If so, the new system could affect all programs
in all states as early as the year 2000.
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NAMA Policy Statement
Discharge of Patients From Treatment for Drug Use
It must be emphasized that methadone maintenance treatment is a
medical treatment for narcotic addiction. Recent research has found
that abstinent former heroin users have irregularities within their immune
and endocrine systems. However, these irregularities are normalized
with methadone maintenance. This further underscores that methadone maintenance
is a medical treatment for a medical condition that has sociological and
psychological aspects, as do many medical conditions, i.e. heart disease.
No other treatment for opiate addiction as is successful as methadone
maintenance, resulting in a 92% reduction in heroin use when treatment
is appropriately done. No other treatment for heroin addiction can boast
such a success rate and, in fact, very few other medical treatments have
as high a success rate as methadone maintenance.
Programs who have high rates of illicit opioid use are, put simply,
"not providing proper treatment." Discharging patients for heroin
use is unethical and usually programs which use such tactics are not providing
adequate dosage or are using the medication as a tool to manipulate the
patient's behavior. Such procedures would be considered unethical
in every other realm of medicine, but because drug use has been perceived
as a behavioral problem, discharging patients for drug use has been tolerated
in methadone treatment.
Imagine how this feels to the patient in treatment. What
if you were diagnosed with cancer and went for the usual radiation treatments.
You followed everything the doctor told you to do, but in the end the cancer
was still growing. Now apply this to methadone treatment: you
would be discharged because you did not respond to treatment.
If you had cancer would you not want the doctor to try something
else, like chemotherapy and if that failed perhaps some new experimental
treatment? You would want the doctor to try everything to save your
life. The same is true for the methadone patient, if 70 mg doesn't
work, then perhaps 80 or 90 or 200 mg will work. For the cancer patient,
perhaps two radiation treatments will work. But imagine the
doctor blaming the cancer patient for not responding to treatment and then
discharging them. "If only you had tried harder!" This happens
to methadone patients every day, they are blamed for the failures of their
Not only does discharging methadone patients from treatment do
a terrible disservice to the patient, but also to the
community. Think of the repercussions when a patient is discharged.
It is inevitable that they will relapse within a short time and considering
the threat of HIV, strain resistant TB, hepatitis and endocarditis the
effects that the discharge will have on the family of the patient is tremendous.
The patient will no longer be able to support their family because they
will e thrown into a state of "drug craving." The crime that one
patient will have to commit to maintain their drug use has been estimated
to cost society from $150,000 to over $300,000 a year. And if this
former patient is arrested, which is very likely, then they will be a ward
of the state costing between $30,000 to $60,000 a year. And should
this former patient become infected with HIV the cost can be as high as
$300,000 a year, and as people with AIDS are living longer the costs are
rising dramatically. Now we ask you, which is better
for the person, the community and the state? A methadone patient
receiving adequate treatment who supports their family, pays their taxes,
pays for their treatment and is a productive member of the community, or
a heroin addict who will cost the community money that could well
be spent on better purposes?
A Comment on Discharging Patients for Using Cocaine
Many programs have adopted the policy of discharging methadone patients
for using cocaine. Presently there is no treatment for cocaine use,
except hospitalization and counseling and hoping that this time something
works. However, NAMA believes that it is unethical to discharge patients
and thus refuse to them treatment for their heroin addiction because they
have developed an ancillary problem. In normal medical practice a
patient with diabetes who did not follow medical advise now developed heart
disease because of this would not be refused their insulin. Neither
should a medication that works for heroin addiction be refused because
of another drug problem.
There are programs that discharge for marijuana use. This
simply does not make sense nor does it serve the community or the patient
and their family. Marijuana is used by a large number of Americans
and is associated with neither the high crime rates nor the significant
medical consequences resultant from abuse of other illicit drugs or alcohol.
Furthermore, many AIDS patients use marijuana on medical advice as a means
of countering the "wasting syndrome". Discharging methadone patients for
using marijuana results in an untreated heroin addict that will cost the
community in crime and money.
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