Volume I, No. XI

Patient Advocacy: Why It Works by Ken T.

My Recovery And Experience With Methadone And Detox by Nancy R.

Patient Denied Entrance to School for the Blind by Lesia J.

Look! DONT's New Advocacy Attorney

To Home Page

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.

To Home Page

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 history!).

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!

To Home Page

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.

It's pretty 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.

I've been 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.

So, 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) says:
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

To Home Page

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 us.

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

To Home Page