TIP/TAP Series: MMT Patients and Pain - Nancy Rose (DONT Secretary)
Methadone & Pain - by John M.
Shoddy Service - by RVV
Another Rapid Detox Experience - Dorothea Pfeiffer - Germany
NAMA Column #4 - Joycelyn Woods
Doctor's Column - A parent asks about his daughter who is on methadone
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In TIP 20 (Matching Treatment to Patient Needs in Opiod Substitution Therapy), it states: "During a medical crisis requiring hospitalization, it is important for the physician providing methadone treatment to communicate with the hospital attending physician. . . . The [hospital physician] should be informed of the patient's methadone dosage and the date on which methadone was last received. It is extremely important that the treating physician be aware that the patient will probably require larger amounts of medication for anesthesia and that adequate pain relief will require that the patient receive [his or her] normal methadone dose. . . plus additional medication" (p. 55).
It states in TIP 1 (State Methadone Treatment Guidelines), "Methadone maintained patients occasionally require medical, surgical, and dental procedures. . . .When the conditions or procedures cause pain, serious errors in patient management commonly occur. As a result, pain is either not treated or seriously undertreated. The practitioner often believes that a patient taking. . . methadone daily could not possibly need anything else for pain. This is absolutely incorrect. It should be crystal clear that the methadone-maintained patient is fully tolerant to the maintenance dose of methadone and thus experiences no analgesic effect. . . At this stable dose, the inadequate treatment of pain in methadone-maintained patients commonly leads to disruptive behavior by angry and frightened patients and discharge against medical advice. . ." (pp. 54-55)."
TIP 1 gives the following guidance: Short-acting opioid analgesics are appropriate and effective in MMT patients if used properly. Because of the established cross-tolerance, [the patient] may require larger-than-usual doses and more frequent administration. Attending physicians may need both firm guidance and reassurance from experienced addiction medicine professionals because the attending physicians are not accustomed to using such large narcotic doses" (p. 55).
Most of the above column is all quoted straight from the TIP/TAP books because this is a very important subject, and it cannot be said that I misinterpreted any part of it! Most of us, as MMT patients, dread going to hospitals or doctors even more than non-addicted people, because we are usually seriously undertreated for pain. Most health professionals are not informed about methadone treatment, and many methadone clinics amazingly haven't even heard of the TIP/TAP books. You may want to find out if your clinic has a set of them; if not, tell them they can order a free set (or you can do it for them) by calling (800) SAY-NOTO.
Also, if you are going into a hospital or plan to see a new doctor, get a letter from your clinic doctor explaining the above TIP/TAP advice. My own clinic has a form letter already made up for patients who ask for one--I carry one with me at all times. A sample clinic letter, borrowed from Dr. J. Thomas Payte, was printed in Methadone Today, Vol. II, No. IX (Sept. 1997).
Don't suffer needlessly! Educate your health care professionals about MMT, if necessary, before you go into the hospital. It is best that you have someone who understands methadone and who would be willing to advocate for you while you are there. You will probably not be feeling your best, and you may be incapacitated during the worst of your stay. Even during the best of times in the hospital environment, it is difficult to keep on top of things. Your advocate will have the ability to move around, make calls, and insist that you are treated properly instead of being brushed off as "the junkie who just wants all the narcotics s/he can get."
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Oh yes, during "peak" times, you first have to take a number, then wait to be called so you can get in line--just like the Department of Motor Vehicles (DMV). How'd you like to have to deal with the DMV every day of your life?
There is gross incompetence throughout my clinic; they lose medical folders, medication cards, and personal work files. Within my first week, they screwed up my dose (20mg short). They don't have well-thought-out systems to administer their overloaded program. The worst problem, however, is that the staff doesn't really seem to care much about the impact of these problems on us patients. They're on a salary, and come quittin' time, they can just leave it all behind. We, on the other hand, are just patients, ("patience?"). They know, that we know, that they know, we will wait for as long as we have to, will endure almost any level of inconvenience, to receive our medication. Oh, we may bitch and moan, but we "ain't goin' nowhere."
My counselor, Mr. Jones, looks tired. I enter his office and ask him politely if I can get a "white" med card which lets "workers" get medicated early in the morning. He absent-mindedly searches his desk for the envelope containing my letterhead and some check stubs (I had to provide some form of "proof" I am self-employed). He asks me to spell my name again.
He finally finds my papers in the folder where they belong. He writes down my i.d. number in a small, un-doodled area along the border of his desktop calendar. "I'll get you a white card up front by tomorrow," he mumbles to no one in particular. I leave.
The next day I ask the front desk if I've got a white card yet. Nope. This is the third time around on this request. If I wasn't self-employed, there's a good chance I'd have lost my job by now for having to leave for two hours in the middle of the day!
Is there a lawsuit or cause for picketing here? Hell no! Just a half-assed business setting new records in bureaucratic inefficiency.
The thing that really bothers me is--500 times $10 dollars is $5,000 per day, or $1,830,000.00 per annum. The staff consists of about five counselors, one nurse, two nurse assistants, a half-time MD, a bookkeeper, and a guard. The space is big, but in the LOW rent district. Somehow, I sense there are substantial profits involved.
In any other industry this incentive would create competition. And that competition would conspire to make a better service--and value--for the CUSTOMER. Unfortunately, you won't see a plaque on my clinic's wall stating: "The Customer is Always Right!" More likely the opposite. . . or, "the patient always lies" would be their credo.
My counselor, Mr. Jones, looks tired today--tired and disgusted
with the whole mess. He's the other victim--he represents a
poorly run organization delivering a shoddy service, and he knows it.
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I went to CITA clinic in Tel Aviv, Israel for the detox in December 1995. Back then, I was just on 35 mg. of methadone a day, which I don't consider a high dose [it isn't--it's very low]. Including flight, hotel and treatment, I paid around 9,000 US$.
Although I knew the medical facts on naltrexone / naloxone detox, they tried to tell me the same "wonder-fluid-story" as Adam reported. They told me that after waking up from anesthesia, I could expect to feel a little tired but nothing like serious withdrawal.
I didn't really believe that and expected at least SOME kind of withdrawal--like going cold turkey from heroin. I have to add that I had already detoxed ten times in the hospital--once from methadone (dosing down within three weeks) and nine cold turkey detoxes from heroin, all of which I finished. But after I woke up six hours later in Israel, I felt so bad that I cannot put it into words. I woke up and had the most acute withdrawal I ever experienced. I had stomach cramps, my arms and legs hurt like hell, I couldn't sleep for a second, and I couldn't lie still without kicking and hitting in the air. I just wanted to die, and if I had known one soul in Tel Aviv, I would have left immediately. I'm not a weak person or someone who complains all the time.
The clinic and the doctors just lied to me. Obviously every person reacts in a different way; there might be patients who feel fine after the UROD treatment. In my case, it went the same way as Adam wrote (Methadone Today, March 1998, Vol.II, No. III, "The Naltrexone Cure'"). I couldn't sleep for more than a month afterwards, but since I don't like benzodiazepines, I didn't take a sleeping aid. But worse than that I got so depressed that I was thinking about committing suicide.
Look, I paid all that money and I really wanted to live without drugs, so it was a huge disappointment. Since I didn't want to give in, I continued to take the naltrexone pills for three months after the treatment. But I felt worse and worse; I finally got so desperate that I stopped taking the antagonist and started methadone.
Now I'm fine (with methadone). I'll graduate from college with a master's degree in Political Science, English Literature and Sociology in about three months time.
This is just my personal experience; for other people naltrexone might work fine. Just don't believe in miracle cures!
By the way, in the clinical naltrexone trials in Göttingen, Germany, depression was one of the major side effects of naltrexone. The retention rate for the treatment was extremely low; after six months nobody was left in treatment. CITA, in Israel, claims that over sixty percent of the patients remain drug free for more than a year. (See the March 1998 Methadone Today Doctor's Column to see the criteria to be counted a success!).
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Luckily, I was introduced to a doctor at a hospital in Glendale, Arizona who referred me to a private clinic in Phoenix. I have been under the care of the doctor there since 1992 and have had no reason to deviate from his treatment modality. I get a daily dose of 100mg and attend the clinic twice weekly. If my daily dose was 80mg or less, I could attend only once weekly with six take homes.
The doctor is a very decent guy. He runs a tight ship but is very fair and has a lot of respect for those who are making the effort to clean up. In terms of cost, it is $40 per week for meds and administration costs. I cannot see where it would cost less to maintain a habit than to belong in a methadone program.
The one great redeeming aspect I find about being in a program is that "tomorrow is always covered." Even when treating with an MD for post surgical support, you always reach an impasse where the doctor makes the decision that "you don't need pain meds anymore--go home and live with it." It cuts out all of that nonsense.
In closing, I would add that it would, of course, be the better
choice not to need any medication, but until something better comes along,
methadone is just as important as insulin. The so-called "war on
drugs" is nonsense. Do you think all of those in law enforcement--from
the judges, lawyers, and cops--would systematically work themselves into
unemployment for a job too well done?
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Both Robin Robinette and Malcolm Dickson of TMAC called the FDA to discuss the situation and explain how this was affecting patients. By the afternoon, the FDA had reversed itself. Evidently they had received some erroneous reports about the Volunteer Clinic and had instituted this to protect the patients. The FDA now said to resubmit all the exemptions--they would look them over, and if everything was in order, they would be approved. So, by four o'clock that afternoon, I received a final call from Malcolm telling me that the first 30 requests had just come back from the FDA approved.
Just this past weekend, I attended the First International Conference on Heroin Maintenance, which was sponsored by The Lindesmith Center. It was a fascinating conference--who would believe that in New York USA international researchers and clinicians would come to report on their experiences with heroin maintenance. Presently, Switzerland and England are the only countries with small projects. However, the results of these projects have encouraged the Dutch to attempt a heroin maintenance trial. The Australians, who were planning one, had it stopped because of politics, but they may be able to move forward now.
I was struck with the fact that the participants in the trials were patients who had failed methadone treatment. During the trial, they were given methadone to take at night and heroin during the day. At the end of the trial, the majority were stable, and several of the participants then switched to methadone. So, perhaps there are a group of patients that may need a mixture of heroin and methadone to stabilize during their first months of treatment. However, it will be a long time before such research will be allowed in the US.
Diane Seaman, of MALTA, came to New York for the Heroin Conference and then stayed for the beginning of the Global Days at the UN. NAMA was asked to present at the conference that was concurrent with the UN Meetings. However, we were scheduled during the time that the President was addressing the UN, and the workshop started rather slowly. However, by the end of the presentation, several persons and groups of persons had wandered in and found us.
We have a new state chapter in Delaware, so welcome them to the NAMA family. NAMA is also preparing to move into new offices. We will still have the same address and phone number--just more space. So, the next month, we will no doubt be busy creating a central location for our ten years of records, files, letters and everything that we keep.
Meetings and Conferences
The First Methadone Advocacy Conference
Saturday, September 26, 1998 - 9:30 AM to 5 PM
The voice of the methadone patient has been excluded from methadone treatment for too long. This conference will discuss the empowering of methadone patients, stigma, and important issues that impact the lives of methadone patients, such as physician prescribing.
Place: Roosevelt Hospital Auditorium
1000 Tenth Avenue
New York City
Fee: $25 or a methadone patient ID card and/or donation
Expanded Pharmacotherapies for the Treatment of Opiate Dependence
Friday, September 25, 1998 - 9 AM to 5 PM
Several countries are using opiates for maintenance treatment, including codeine, palfium, morphine, buprenorphine and injectable methadone.
Place: New York Academy of Medicine
Fifth Avenue and 103 Street
New York City
Fee: $40/50 (lunch included) $20 students
The National Letter Writing Campaign
This month, the letter goes to your state senator and assembly person. Many patients think it is useless to write a letter or that other patients are not doing it. This is far from true, as many of you have already experienced. The letter writing campaign has begun to make an impact. NAMA receives letters that are copies of the letters that patients sent and we have also begun to get letters from patients who received a response from their legislator. So far, every one is positive. By the end of the year, important legislators and policy makers will have received letters telling them that "methadone saves lives." So, don't forget to write your letter this month. And check our web site for any other information at www.methadone.org.
National Alliance of Methadone Advocates
435 Second Avenue
New York, NY 10010
Attn: The National Letter Writing Campaign
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