Volume I, No. XI
Patient Advocacy: Why It Works by Ken T.
My Recovery And Experience With Methadone And Detox by Nancy
Patient Denied Entrance to School for the Blind by Lesia J.
Look! DONT's New Advocacy Attorney
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Patient Advocacy: Why It Works
by Ken T.
I receive newsletters from throughout the U.S. that are published by patient
advocates. Many of these newsletters are similar to ours in terms of patient articles--Dear
Editor, etc., but that is where the similarities end. More often than not, I find
articles that tell of the many horror stories that happen at methadone clinics day
in and day out! Of course, we have our problems-- all clinics do, but why
don't we have those types of horror stories at our clinic, at NPL? The answers to
why will be given throughout this article.
There are so many of you out there
who take their treatment at the clinic for granted. But, what happens when you,
as a methadone patient receive a huge dose of reality rather than your methadone?
Take home privileges are lost, a false positive shows up on your urinalysis report,
you are told that you must begin to detox because you failed to keep a payment arrangement.
Sound familiar? Well, I'm sure it does because anyone who has been on methadone
maintenance for any period of time has at least heard of these things happening to
someone else, if not, themselves.
Take a closer look at the reality of
any situation within most methadone clinics and it will leave you confused and wondering.
The clinic has become a very important part of our lives. I don't mean to pencil-whip
just the clinics, but the deck is surely stacked against us--the addict. State laws,
government regulations, clinic rules!?!? This can be so confusing at times because,
as we see so often, one law contradicts another, one clinic rule is in effect today,
while another rule will work tomorrow.
This is where your patient advocacy
group comes into the picture. We have strength in both numbers (10,000 or more and
growing) and in knowledge (an extensive library and access to publications on the
Internet). In addition, it is extremely easy to join us--just show up at a meeting.
If there is no advocacy group at your clinic, start one (ask the editor to help
you or show you how to go about becoming a NAMA chapter), or attend our meetings.
Only about one hour of your time is required per month. We try to deal with potential
problems at our meetings before they affect anyone in a negative manner. We work
closely with our clinic's staff by sharing information, solving problems in general,
or just enjoying one another's company!
I truly believe that by working
closely with staff we can head off and solve any major problems so that we do not
have to report any horror stories originating at our clinic. It is such a privilege
and joy to be able to meet, work with, and share information with so many of the
staff members. Most of the many negative issues that we hear through the clinic
grapevine and many of the problems encountered within a clinic usually come from
the ones without an advocacy group. Do we keep the clinics in line? No, but we
do work with clinic staff to work out minor disagreements before they become a major
issue. Whatever your opinion or whatever you perceive a problem to be, one thing
is certain--a problem can never be transformed into a positive if we don't work together
to help ourselves.
There is a suggestion box near the "Patient Bulletin
Board" at the NPL Roseville clinic. This is for you to make suggestions or tell
us of a potential problem. If there is no suggestion box at your clinic, take the
initiative and ask clinic staff if you could put one up, or find out who your patient
advocate is, and let him or her know what your suggestion is. Come on! Let us know
how you feel or what can be done to make your time at the clinic better.
DONT is not another self-help group; it is a group that works to maintain quality
care within the "met" clinic--quality care that each and every one of us
deserve and need. As methadone advocates, we come together to discover courage,
wisdom and strength within and among us, things that may have been lost to us in
our addictions. We do have what it takes when it seems that we are required to go
that extra mile. It can be done if we help one another, stick by each other, and
deal with it. The key word is "together", and I cannot stress this enough.
Join us, help us, but more importantly, help yourself. Attend a meeting; get to
know us, and get to know your clinic's staff. Learn what your rights really are.
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AND EXPERIENCE WITH METHADONE AND DETOX
by Nancy R. (Roseville)
I have been on methadone since 1975, straight through to the present. During
my first 10 years on methadone (1975 to 1985), I continued to use heroin, then Dilaudids.
Before I became addicted, I graduated from high school in 1971 then worked as a
secretary for several years. Within one year of using heroin, my life fell apart.
I quit my job, sold my car (the last material possession I had left), broke up with
my boyfriend of seven years, and moved into the Cass Corridor (for those not familiar
with Detroit, in the 1970's, the Cass Corridor was a section in downtown Detroit
considered the ghetto, full of street addicts, drugs, poverty, and prostitution.
Today, over 20 years later, the area has been considerably "cleaned up").
Anyway, for the next four years, I lived "in the streets". . .staying
at cheap hotels and shooting galleries or crashing at friends' apartments, selling
myself, cheating and stealing for the next "fix." Yes, I was on methadone
during that time, but I was not quite ready to give up the drugs yet (although I
believe my use of illicit drugs would have been greater without the methadone). Besides, the city-run methadone clinic I belonged to would only give up to a maximum dose of 30mg. That wasn't enough to keep me from feeling withdrawal symptoms or to take away drug cravings.
Shooting heroin ruined my health very quickly; I had seizures, caught Hepatitis
B, and got several abscesses. Then, someone introduced Dilaudids to me. Dilaudid
pills could be crushed, added to water, then injected, and they worked like heroin.
With Dilaudid, at least addicts knew what they were getting; in other words, the
pills could not be "cut" with who-knows-what, like heroin is. But, buying
Dilaudid illegally on the street was extremely expensive, just like buying heroin.
I finally got tired of chasing money, chasing drugs, shooting up, taking a chance
of getting arrested, and of "living the life."
Luckily, I found a privately-owned clinic where doses were individualized. I was able to go as high in dose as I needed (150mg) in order to feel comfortable and end any drug cravings. So, since January 1985, I have never again used an illicit drug, but I continued taking methadone at
the methadone clinic. My life turned around dramatically! I went back to work full-time
as a secretary and enrolled in college part-time in the evenings. I worked nine
years at a local hospital, eventually getting promoted to Executive Secretary to
the Medical Director. I am halfway through my junior year at Wayne State University,
working toward a bachelors degree. I got married, and we bought a house in Detroit.
Yes, METHADONE SAVED MY LIFE!
A little over a year ago, I was laid off from
the hospital. I had started attending Narcotic Anonymous (N.A.) meetings the previous
year. When I lost my job, I decided to take advantage of the break from my grueling
schedule of work and school to see if I could possibly detox from methadone. A little
background history here: Since 1985, I had been taking between 100mg and 150mg of
methadone daily (some of you may remember reading my previous articles in Methadone
Today--"Take Home Med Policies, What is Fair?" in the August 1995 issue
and "Narcotics Anonymous" in the February 1996 issue). I felt most comfortable
at 150mg but would try periodically to detox down to 100mg in order to get once-a-week
take homes. I would achieve this then find I just couldn't function as well and
go back up in dose to 150mg (but then have to go to the clinic every day).
I began my detox: From October 1995 to March 1996, I dropped from 150mg to 130mg.
Then, within three months (April to June 1996), I detoxed from 130mg to 45mg! Well,
it sounds great, but the physical withdrawal symptoms suddenly hit me as if I had
run into a brick wall. I had bad stomach cramping, nausea, diarrhea, sleep disturbances,
aches and pains, and worst of all was that jittery, internal restlessness where you
can't stand being in your own body--you just want to shake your arms and legs right
off. I didn't expect detoxing to be a breeze, especially after taking methadone
for over 21 years and at high doses, but it was hard to persevere day after day with
severe withdrawals. The clinic doctor pointed out that I had dropped much too fast
and suggested stopping or slowing down the detox, or even going back up in dose slightly
until my body had time to readjust, then continuing the detox at a much slower pace.
I followed his advice. I backed up to 65mg for a few weeks (I felt much better),
and now I have just begun my detox again, only going down a few milligrams a week.
For those interested, I will write again to keep you updated on my progress!
I must add this: I am strongly in favor of Methadone Maintenance Treatment (MMT).
I understand many of us patients may need to take methadone for the rest of our
lives, and we need not feel guilty about this! It has to do with brain chemistry
(in fact, if you are interested, contact Beth Francisco, Editor of this newsletter,
and she will be happy to pass on articles on brain chemistry and addiction. An excellent
article appears in the Ombudsman, Fall/Winter 1994 issue, by Joycelyn Woods, Executive
Vice President of the National Alliance of Methadone Advocates [NAMA], called "A
Matter of Degree", which explains in medical and biological terms about how
long-term use of opiates can cause damage to our brain chemistry, sometimes permanently).
I decided to try to detox after the past 11 years of successful MMT for several reasons.
First, I am 43 years old, and I thought, "If I don't at least try to see if
I can detox now, the older I get, the harder it will be to do it." Secondly,
I am scared! It really scares me how the government is treating addicts in general,
and methadone patients in particular--as criminals, rather than persons with a disease.
Last year, the DEA raided a Detroit methadone clinic as if it were a "dope
house", going in with guns drawn! Appalling! Addiction is considered a disease,
and MMT is recognized as a viable treatment option by medical professionals. But,
for persons with an addiction, Medicaid funding is in danger of being cut, SSI has
been cut, and the government is considering making all methadone clinics 7-day-a-week
operations (in other words, No take homes for anyone regardless of your personal
A third reason I am trying to detox is that I would like to see
if I can live life methadone-free. Narcotics Anonymous gave me many tools for learning
how to cope with life and be happy without drugs. NA has helped put me on a path
of personal and spiritual growth. Plus, I have met many people in NA who have successfully
detoxed from long-term methadone treatment. They gave me hope. I want to see if
I can do it!
One last note: "Total abstinence" does not have to
be the only definition of "successful recovery." To paraphrase something
our editor said recently--to only count complete abstinence as successful treatment
dooms many addicts to total failure! MMT is success for many addicts when you consider
"success" to mean an addict who turns his or her life around, stopping
illicit drug use and stopping criminal activity, going back to work, paying taxes,
raising families, and voting--just like everyone else!
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Entrance to School for the Blind
My name is Lesia, from Alabama. I was recently denied entrance into Alabama's
School for the Blind because I am on methadone. The methadone clinic where I am
a patient had to get permission from the state and FDA in order for me to have the
take homes that I needed while being housed in the dorm at the school. Earlier in
the year, I had on two occasions attended the school, but when the director learned
of my being on methadone, he denied my admission as a student.
tacky what this guy is doing by not allowing me to attend his state-funded school.
The ironic thing of it is that my counselor at my methadone clinic had to get permission
to give me enough take homes in order for me to be able to stay down there for how
ever long I needed in order for me to get the schooling I needed. This permission
was received from the FDA and the state also.
Another thing. . .I've really
struggled in my heart about doing the right thing concerning this. You see, for
so many years I've allowed the choices that I've made while on drugs to really screw
up my life, and today I'm trying really hard to do the right thing and make the right
choices. So, my taking this bozo to court is really a difficult choice that I'm
having to make. But if I don't do something, then that just makes it easier for
him to do it again.
Methadone has such a bad reputation because people think
that its just another drug and not a medication. Without methadone, I wouldn't be
where I am today. I've gone back to school, earned an Associates Degree, and do
people not realize that it took me two years to do that. . .I wouldn't have been
able to do it had it not been for methadone. Because, you see, I'm not just your
today's average addict; I'm a hard-core junkie. I started doing heroin when I was
15 years old; I'm 38 today. I've done 5 years in prison because of drugs and have
struggled with the disease of addiction for over half of my life.
on methadone maintenance for going on four years now. For a long time, I struggled
with wanting to be "normal" again and not having to take methadone, but
I finally realized that it is through methadone that I've been able to not cheat
or steal or lie any more, and through that realization, I've come to accept that
if it takes the rest of my life to be on methadone, then hey, so be it. . .My life
has been a lot better being on methadone than it ever was off of it and that, my
friend, is the reality of methadone that people need to understand--that it's not
a "drug" as most people call it; it's a medication that I take that the
doctor prescribes for me because if I go without it, the chances of my survival are
reduced dramatically, and that's a chance that I don't want to take.
like I said, anytime that you want an advocate who will speak up for methadone and
stand up for what's right, and also stand up for the rights of methadone patients.
. .Let me at em! Because it's just like Joycelyn (Executive Vice President of NAMA)
Together we can make a difference.
Together we can change the world.
When I asked Lesia if I could publish this story, she explained that her hard
drive crashed while reading my E-mail, so she lost our address. She wrote to Joycelyn
Woods and found out that we are affiliated with NAMA. Lesia said, "Tis a small
world we live in, especially now that we are all connected to the world wide web."
She continued, "You betcha you can publish my letter--on one condition tho.
. .that is that I can have a copy [of Methadone Today] and hopefully a subscription."
You know you can, Lesia; we are sending you all the back issues too.
Lesia will keep us posted regarding her case. - The Editor
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NEW ADVOCACY ATTORNEY
DONT has recently been donated the services of an
attorney who is on call to respond to any non-criminal methadone-related legal matters.
To this end, patients who have problems they feel may require the assistance of
an attorney should contact us in writing describing the problem. Examples of problems
we may be able to assist patients with are discrimination, employment, patient rights,
and family law issues "related to the patient's status as a methadone patient."
The attorney, William Read, will review the problem and contact the patient.
Where appropriate, he will write a letter for DONT on behalf of the patient in an
attempt to resolve the problem informally. If the problem cannot be resolved informally,
he will assist the patient in finding the proper representation (legal or otherwise)
and, if the patient desires, monitor the course of any proceeding involving the patient
which is related to the patient's status as a methadone maintenance patient.
There are several laws which explicitly protect the rights of methadone patients
and other legal theories available to the patient who feels he or she is not receiving
fair treatment because of his or her status as a methadone patient. In the past
the courts have proven to be a great aid and sometimes the last refuge of those society
shirks or upon whom society looks down. As part of DONT's ongoing advocacy efforts
on behalf of patients, we are excited to offer this service. It offers a new avenue
at no cost by which patients can enforce their rights and perhaps secure new ones
for themselves and other patients.
Unless you let us know about your problems,
however, this service can do absolutely nothing to assist anyone. So, while we hope
your status as a methadone patient does not cause you any problems, in our opinion,
you have the same rights as does any other citizen. Accordingly, if you feel you
are not being treated fairly because you are a methadone patient, please contact
Attorney Read is licensed in California, although he is admitted to the
USDC for the Eastern District of Michigan. He is also in the process of writing
a pamphlet concerning how to go about finding a lawyer, and we will make this available
to you as soon as we can.
On behalf of DONT methadone patients, we thank
you, Bill, and are very grateful for your advocacy efforts. - The Editor
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