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Report from our nation’s capitol - by Chris Reardon, DC-ARM
Clinic Mismanagement - by Barbara
New Video Paints Positive Portrait of Methadone - Reprinted from A.T. Forum
Medical Alert Card - Order one today
Doctor's Column - November
2000, Vol. V, No. XI
Methadone Toxicity
Three important meetings regarding MMT (methadone maintenance
treatment) were recently held in our nation’s capitol.
I sat through the entire full day discussion of the “pilot accreditation” program. What was very evident is that “consumers” (i.e., patients) are being left out of this whole process. One of the most vexing problems in current MMT is the issue of dose. And despite protests from various physicians on the panel, JCAHO and CARF (the two main accrediting organizations) continue to accredit clinics with dose caps. Most in the MMT advocacy field think this is unbelievable. Any clinic in the year 2000 that is operating with a dose cap is practicing BAD MEDICINE. However, as a result of this meeting and the advocacy meeting described below, CSAT has seemed to take note of the dose cap problem and is seeking ways to address it.
Another issue that is very troubling to advocates is the total absence of patients in the accrediting bodies. JCAHO and CARF have such strict standards for their accreditors, such as Ph.D. level education and other extensive *-“schooling” requirements, that it is unlikely that many current MMT patients would qualify for the current accreditation teams. We feel that at least one slot per team should be reserved for patient advocates. We believe a current MMT patient can determine far more about whether a clinic is worthy of “accreditation” than some academic who has never set foot in a methadone clinic before.
JCAHO and CARF indicate that they do have formalized processes to interview patients and means for patients to complain about accredited clinics. Yet from what we have seen, the clinics are choosing the patients who get interviewed at accrediting time, and often patients have no idea that their clinic is even in the “pilot accreditation program”, often because clinics do not inform patients that they are in the pilot.
Many people both inside and outside of the MMT field see this accreditation process as a total waste of time and money - it looks like the major beneficiaries will be CARF and JCAHO--not the patients. Because of the expense involved, smaller clinics may be run out of business by the accreditation process. In no way will this process “expand access” to MMT. Ironically, the accreditation process may place additional obstacles to expanding access, particularly in rural areas. But right now, it looks like accreditation is here to stay.
At the end of the day, fifteen minutes were allocated for “public
comments”. I, an ARM (Advocates for Recovery through Medicine) representative,
was the only person there to make any public comments on this very important
issue - there were no patients besides me, no treatment providers, nor
anyone else. Of course, I objected to the practice of accrediting
clinics with dose caps and also pointed out the lack of information being
given to patients about the whole accreditation process.
The ARM representatives, including Terri Martinez, who also runs the Watchdog site, spent the whole two days discussing advocacy issues, from morning until late at night. The purpose of the actual meeting was to brainstorm on Patient/ Program issues and come up with ideas on how to resolve them. Major issues discussed were patient/provider education, integration of services, individualized treatment, stigma associated with MMT, discrimination against MMT patients and unfair treatment practices.
After extensive discussion, the attendees came up with possible ways to address these important issues. Education stood out as one of the most important solutions to many of patients’ problems. Physician prescribing was also mentioned as a way to address such issues, especially problems with individualized treatment, stigma and discrimination. If we [patients] are treated as any other patient with a chronic disease, some of these problem areas will disappear.
We came up with ideas such as an extensive media campaign, with commercials, public service announcements, literature, classes, an 800 phone number for patients, and brochures to address specific issues, such as physician prescribing and methadone and pregnancy.
We discussed approaching the “Partnership for a Drug Free America” to see if they would spend some of their millions on some public service announcements and commercials promoting methadone maintenance. We discussed making a video, something a little more “meaty” than Danya’s 7 ½ minute miracle, “The Joy of Being Normal” [see “New Video...” on page 1].
By the end of the two-day session, we had a promise from CSAT for some funding to help these advocacy groups in their educational efforts. The details haven’t been worked out, but you may soon see a commercial promoting methadone maintenance in your neighborhood.
Stigma Reduction Forum: The Community’s Voices
This meeting, sponsored by the DC/Delaware Addiction Technology Transfer
Center (ATTC) and funded by a cooperative agreement between CSAT and SAMHSA
(Substance Abuse and Mental Health Services Administration), was held on
September 28 in Washington, D.C. Although it was advertised as an
“interactive” session, it turned out to be four presentations by “experts”,
with a small amount of time for questions at the end of each presentation.
According to Valerie Robinson, the Director of Training at DC/Delaware ATTC, “the purpose of the forum was to promote information sharing and to begin developing community strategies for freeing the substance abuse field from the stigmas that prevent us from realizing our true potential. These strategies can move us away from using drugs and alcohol, and beyond the revolving doors of the criminal justice system, mental health agencies, homeless shelters, unemployment centers and medical services. We want to insure that our community provides adequate treatment services that are clinically and culturally comprehensive and easily accessible. Together we will explore these issues and search for solutions. It is my hope that this event will be the beginning of a change in attitudes towards recovering people in our communities, in the workplace, in medical treatment, and in our hearts.”
The first panel was “Stigma, Why?” where seven experts, such as Mark Parrino from AMTA (American Methadone Treatment Association), Darryl Rouson, the SA liaison at the National Bar Association, and advocates from Georgia and New York talked about stigma and how it affected the patients in their programs and under their care. The second panel, “How Has Stigma Affected Me?” was composed of recovering people and advocates who discussed stigma in their lives. The third panel was “Stigmatization of Professionals in the Field of Substance Abuse Treatment” and included my own clinic director, Tyrone V. Patterson and other MMT clinic directors. They spoke about how other substance abuse professionals view methadone treatment providers as the dregs of the profession and how it is necessary to change this perception (in my opinion, this perception is very accurate in many cases).
The last panel, “Where do We Go From Here?” included many of the people from the previous panels discussing ways to address stigma. One idea I did not hear was moving methadone into the doctor’s office. If we could be treated by trained doctors, in an office setting, like any other patient with a chronic disease, the stigma associated with the “methadone clinic” and the attendant loitering problems would disappear. Providers in the MMT field would no longer be stigmatized because they would no longer be ostracized and relegated to the backwaters of medicine. In fact, if this country moved to a pure medical maintenance model, there would be no more need for methadone clinics and their administrators, counselors, etc. These professionals would be free to find employment in some other, more “acceptable”, area of the substance abuse arena. The only really good suggestion that this panel came up with was the extreme need for education--that addiction is a medical disease, and opiate addiction especially can be treated easily in a doctor’s office.
Dr. H. Westley Clark, the Director of CSAT, made the opening statement,
and he noted that “CSAT is now funding patient advocacy organizations,
including AFIRM, ARM and NAMA.” Although this event was not exactly
what I had anticipated, there is a crying need for more sessions like this,
if just to educate people in the substance abuse field in general about
methadone maintenance. I was very happy to see people involved in
the methadone field, either as providers, patients, advocates, or as with
the case of Mark Parinno, head of trade associations, included in this
session.
No wonder my clinic did not get chosen for the accreditation pilot! My clinic is so remiss about paperwork. I entered that clinic with 5+ years clean, 6 takehomes, and a daily dose of 20 mg. After a few months, I filled out the required paperwork for a 5 mg decrease in dose, to be done blind, over a period of 6 months.
Nothing became of my dose decrease request. I submitted the paperwork again - AGAIN nothing. I submitted it again, again, and again; I was told repeatedly “it was lost.” I waited almost a YEAR - no decrease. Finally, I E-mailed the director and told him, "last chance, I'm going to the State Methadone Authority (SMA). The director knew that I once had a working relationship with the SMA. Next day? Decrease approved!
The fact is that the horror stories abound at this clinic just as they do elsewhere. In my case, it was “who I knew” that enabled my treatment to be addressed but, sadly, not all patients happen to know the “right person.” Thus, I am sorry that my clinic didn't make the accredidation pilot, but it doesn't surprise me in the least.
I suggested to my clinic that they create a patient liason board - it was not approved. The loss of any control is what I believe they fear. This may force their hand at responsibly addressing some of the more complicated needs/issues of patients.
It is my belief, that EVERY SINGLE CLINIC should be required by law to have a patient liason board. This board would take all patient complaints and negotiate them with the clinic’s administration. The board should consist of patients in good standing who understand confidentiality laws. The boards could also check back with a patient advocacy organization such as ARM or NAMA. I see no other way to keep clinics in constant check (this is somewhat borrowed from the process of labor unions).
Editor’s Note: CSAT chooses clinics for the accreditation
pilot randomly, so this clinic was not passed over for the pilot because
of poor administration. We like Barbara’s suggestion that clinics
be required, “to have a patient liason board.” Using labor unions
as a model is a good idea: just as employees should have a say in
the workplace, methadone patients should have a say in their treatment.
SILVER SPRING, MD - AT Forum Review - The American Methadone Treatment Association (AMTA) , in conjunction with Danya International, has officially released a groundbreaking video program called The Joy of Being Normal.
This short (7 1/3 minutes) film is itself a joy to behold as it skillfully illustrates the benefits of methadone as a medication allowing people to live normal and productive lives. Several vignettes reveal examples of "secret successes" - methadone patients flourishing in everyday life, with responsible jobs and loving families - which have so often been hidden from public view.
The public's ignorance of what methadone really is and the stigma surrounding opioid addiction treatment are also highlighted. Roving-reporter interviews of people on the street are almost humorous in their glaring misperceptions of methadone.
In another scene, a teary-eyed mother admits that for years she misunderstood addiction and how methadone helps recovery. She praises the medication for the return of her son as the "normal person" that she once knew and loved.
The film is excellently produced, culturally diverse, attention-grabbing, and suitable for any audience. Our single concern was that the presentation seemed so brief, we wanted to see and hear much, much more. But, this also may be the film's greatest asset, for it is certain to generate further interest and set a very positive tone for discussions with community groups, local agencies, healthcare professionals, business organizations, families and prospective patients, and others. Indeed, The Joy of Being Normal can be a powerful tool to help spark the sort of open dialogue that may help abolish the enduring stigma surrounding this vital treatment modality.
Copies of The Joy of Being Normal video can be ordered from Danya International; 8737 Colesville Rd., Suite 1200; Silver Spring, Maryland 20910. Phone: 301-565-2142. Website: http://www.danya.com/methadone. Cost is $14.95 plus $3.00 shipping & handling.
Editor’s Note: A good idea - if only the
video were aired on television.
Please understand that Methadone Today is solely supported by subscriptions and donations--we do not receive monies from any federal, state, or local government or municipality or private grants. Furthermore, Methadone Today is run entirely by volunteers; no one receives a wage or salary, so any donations or subscription fees are used to print and distribute newsletters.
To those readers who obtain copies of Methadone Today from their clinics--please realize that subscribers are in effect paying for the newsletters you obtain, as most clinics do not pay a subscription fee for the newsletters we provide. If you have been picking up Methadone Today from your clinic, please consider purchasing a subscription; by doing so, you will allow us to continue to print Methadone Today, which educates patients as well as clinic staff and advocates for patients’ rights. Subscribing also benefits you, as each issue will be mailed directly to you at the beginning of the month, and you don’t have to worry about your clinic running out.
To present subscribers: we sincerely apologize that we cannot print as many issues as previously stated. If you would like an adjustment to your subscription (issues added on), please contact us at the address below--to receive such an adjustment, you must contact us by September 30, 2000. If you do not ask for this adjustment, we will be able to continue publishing just that much longer. We are truly sorry that our faithful subscribers must bear the burden for those who continue to read the newsletter but feel they have no responsibility to pay for it.
We have been making personalized, laminated Medical Alert cards for methadone patients to carry in their wallets. On one side of the card, it contains your name, your clinic's name, and your clinic's phone number. On the other side, there is a list of antagonists that should not be given to you as a methadone patient. It also warns that use of these medications will cause a syndrome that will necessitate immediate hospitalization. The card will help you in case you are unable to tell medical personnel what medications are contraindicated while you are taking methadone.
For a personalized, laminated methadone MEDICAL ALERT card, send your name, clinic's name, clinic's phone number,& self-addressed, stamped envelope [SASE] - cannot be processed without preceding - $3 with any order (subscription to Methadone Today or DONT membership), $5 without order.
Name Phone:
Address Fax:
City/State/Zip
E-mail Address
Clinic Phone
Note: Do a Print Preview (usually from the File Menu on your browser), and you can find out what page you should print so that you can just print this form and not the whole file.
Addiction Treatment Forum, "Patients Battling Stigma & Prejudice," (Vol. VIII, #4, p. 1) reported on a research study by Nancy Nieuman, MA, CPC, which found that: "more than 66% (two-thirds) [of the patients surveyed] reported denial of employment or loss of existing jobs due to methadone-positive urine tests." This is a high percentage, especially considering that such employment discrimination is a blatant violation of the Americans with Disabilities Act (ADA).
Given that this is such a common problem, methadone patients need to educate themselves about their legal rights and how to protect those rights. The research study cited above found that most patients were indeed not aware that discrimination based on methadone-positive urine test results if caused by prescribed methadone was illegal. Methadone clinics could play a role in such education by arming their counselors with handouts and information on the ADA to be passed out to patients. This is the first step as, obviously, patients will not take action if they do not know that the employer violated the law or what to do about it.
The next issue is what methadone patients should do to protect themselves if undergoing an employment drug test. Ideally, the patient should find out whether methadone is going to be tested for. Taking methadone will not cause an opiate-positive test result. To be detected, methadone must be specifically tested for. It is often not tested for, and there is no sense in revealing that one is on methadone if it is not necessary to do so. Sometimes employers or the clinic conducting the drug test will present the employee with a list of the substancesfor which they are testing. But obviously, finding out whether methadone is going to be tested for is often not possible.
If you discover that methadone is going to be tested for or you are not sure. If at some point you are asked by your employer or the clinic conducting the drug test to provide a list of prescription medications, do not fail to list methadone in the hope that everything will work itself out. If they do test for methadone, you will most likely test positive for it unless you are on a very low dose. Methadone patients sometimes lie/fail to list methadone because they figure they have nothing to lose, but in doing so they are giving a valid excuse for employers to fire/refuse to hire them (i.e., they are not firing you because you are a methadone patient or opiate addict; they are firing you because you were dishones--whether this is the true reason or not, this gives them a way out of a discrimination charge).
If the drug testing clinic does ask you to provide a list of prescription medications, this may indicate that your employer will only be informed of "positive" drug test results caused by illicit rather than prescribed drug use (another reason to include methadone on such a list). Some drug testing clinics will only ask for a list of prescription drugs if a "positive" drug test result occurs - again, this may indicate that your employer will only be informed of "positive" drug test results caused by illicit drug use and they will not find out that you are on methadone. The worst situation is when the drug testing clinic never asks for a list of prescription medications and sends the "raw" drug test results to your employer, not only revealing that you tested positive for methadone but leaving it for you to explain to your employer that the "positive" test result was due to a prescribed medication and not illicit drug use. This is particularly bad in the case of a pre-employment drug screen, since your employer may label you as a "druggie" even before you have a chance to tell them that the "positive" test was due to a prescribed medication. Hopefully your employer will realize that methadone maintenance is a legitimate medical treatment or at least understand that firing/not hiring you because you are in methadone treatment would violate the ADA.
What to do if you are fired/not hired after a drug test? Naturally, if they haven't told you why you were fired/not hired, you should ask them. . . and if they mention the drug test results, ask them to specify what substance(s) were found. If they do mention that you tested positive for methadone, reiterate that you are on methadone by prescription and that you can bring verification if necessary. Assuming your employer does not back off of its decision to fire/not hire you, you might want to state that you feel that it is unfair for them to discriminate based on a medical treatment and that you are going to consult with your attorney about whether their actions violate the Americans with Disabilities Act. If the drug test in question was pre-employment and your employer won't give a reason for not hiring you, you may have a good claim under the ADA.
In most cases, employers do not conduct pre-employment drug screens until they have already decided to hire the applicant, contingent on passing a drug screen and/or medical exam. Therefore, an employer is going to be hard-pressed to explain why you were not hired after going through with the drug screen. This is why you do not want to lie/withhold information--that goes not only for prescription medications but also for information filled out on your application or resume. If you lied on your application, you may have given them a way out of a discrimination suit (i.e., the employer may claim that they did not hire you because they discovered that you lied on your application).
If you were currently an employee when the drug test was conducted, you should file a grievance with your union if in a union shop. In a union shop, you are at a real advantage--not only because you have the grievance procedure but also because you have a contract on your side, the collective bargaining agreement, which stipulates that employees can only be fired "for just cause." Therefore, you [or actually your union] don't even have to prove that your employer violated the ADA, only that there wasn't a just reason for you being fired.
If you are not in a union shop, you can still sue under the ADA.
Either way, you should ask your employer why you are being fired.
If your employer does give you reasons besides the drug test results, think
about the following: how has the employer dealt with other employees who
have been in similar situations (i.e., if you are being fired for being
five minutes late to work twice in the last two months, how has your employer
dealt with other employees who were tardy? Did they only give a written
warning to other employees for similar infractions, and how many late days
did other employees have before being fired or suspended?)
If you do initiate a lawsuit and even go to court, be prepared--keep
a written log as events happen--in case you eventually do pursue a lawsuit.
In court, you will have the burden of proving that you were discriminated
against based on methadone/opiate addict status. Chances are, you
will not wind up in court--whether because you can find just as good a
job elsewhere, you don't feel it's worth it, etc.--but it doesn't hurt
to be prepared.
Hopefully you will never need this information. Many employment drug tests do not test for methadone and certainly not all employers are going to discriminate against you because you are in methadone treatment. But you should know your rights and be prepared. You shouldn't have to accept discrimination in employment or anywhere else.
Editor's Note: If you have experienced employment
discrimination, please send us your story. For that matter, if you
have any questions relating to opiate agonist treatment (methadone, OrLAAM,
or Buprenorphine) send it in and our Medical Advisors will try to answer
them.
Dear Methadone Today,
After 2 ½ years on methadone, my daughter cannot afford the $85.00 per week. She was immediately put out of the program. She is in withdrawals now, has lost her job and is going to lose her apartment soon. She paid about $13,620.00 for the treatment. She went in at 90 mg and is now at 60 mg - but the price doesn't go down for the less you take. She saw a doctor once a month and a counselor once or twice a month, who talked to my daughter about "her" problems. Also the clinic was only open short hours and it was many miles away, making it difficult to dose and get back in time for work. It's a lousy program and needs complete overhauling to be effective. -Judy
Dear Judy,
We are sorry to hear about your daughter’s predicament. Sadly, the problems you complain about are not unusual for methadone clinics. We believe $85.00 per week is too much for methadone maintenance treatment - particularly for the services your daughter is/was receiving. As hard as it is to believe, there are areas of the U.S. where methadone clinics charge over $100.00 per week.
Few clinics vary fees based on the patient’s dosage, and those that do so usually only vary fees by a small amount (i.e.: $5.00 per week). The main reason that clinics do not base fees on dosage is that the actual cost of medication constitutes a very small portion of the cost of treatment - counseling sessions, doctor’s evaluations and to a lesser extent, the actual dispensing of doses (e.g.: the cost of paying a nurse to dispense doses) makes up the bulk of treatment costs. The exception to this is when clinics offer OrLAAM in addition to methadone, they will often charge more for OrLAAM as it is considerably more expensive than methadone (probably because the patent hasn’t run out on LAAM yet, so the manufacturer has a monopoly).
The fact is that clinics can often get away with charging exorbitant
amounts as well as skimping in other areas (i.e.: being open short hours)
because they generally have a monopoly or near monopoly (depending on the
area) on methadone treatment.
This is, of course, due to regulations that limit the practice of methadone
treatment to specially licensed facilities and place such extensive requirements
that it is next to impossible for physicians to treat patients out of a
private practice/office-based setting. If your daughter was receiving
nearly any other treatment, she could have simply gone to another doctor
or facility that charged less and provided better services.
Federal and [sometimes] state regulations also increase the cost of treatment in other ways. For example, the requirement that patients dose at their clinic 1-6 days a week raises the cost of treatment, as a nurse must be hired to dispense your dose and “supervise” you as you ingest the medication. Similarly, the requirement that the medication be dispensed by the treatment provider may also increase the cost of treatment; it would probably cost patients less if they could obtain their medication from a pharmacy [especially if they have health insurance that covers prescription medication*]. Also, drug testing requirements raise the cost of treatment; though many would argue that drug testing is an important component of treatment, requirements regarding frequency of testing and what drugs should be tested for often result in additional expense for unnecessary services. For example, it is probably unnecessary for a patient who has been in treatment and illicit drug free for several years to be drug tested as frequently as a new patient - but the regulations prevent the clinic physician from using discretion in frequency of drug tests. There are other components of the regulations that increase the cost of treatment, including the bureaucratic licensing requirements and the requirement that services be bundled (e.g.: patients must receive counseling at the clinic and may not elect to see a counselor outside of the clinic in lieu of seeing the clinic counselor). Thus, the regulations have a lot to do with the high cost of treatment.
The possibility of medical maintenance/office-based treatment for “stable” patients is currently being considered. Among the advantages of this would be a significant cost-savings for the patient. We don’t know exactly what such treatment might cost, but it would probably be one-third to one-quarter the cost of traditional clinic-based treatment. Depending on the specifics, patients may save additional money off the cost of the actual medication; that is, if patients can get their medication from any pharmacy, they may be able to shop around for the best deal - and insurance may cover some of the medication cost (i.e.: my health insurance has a $1.00 co-pay for prescription medications, so a month’s supply of medication would cost only $1.00). Note that this would only be a partial solution to high treatment costs as, at least in the foreseeable, future medical maintenance will only be available to stable patients who have been in treatment for a significant period of time (probably a minimum of two to three years).
The other side of the coin, which we will only touch briefly on, is the lack of adequate health insurance coverage for methadone treatment. We are all aware of the increasing percentage of the population which has no health insurance at all, but those who do have health insurance may not receive satisfactory coverage for substance abuse treatment. A substance abuse parity bill was proposed in Congress; had this bill passed, insurance companies would have been required to cover methadone treatment to the same extent they cover other treatments.
Thus, there are various reasons why many methadone patients such as your daughter receive inferior, overpriced treatment. We believe that there are possible solutions to the problems of treatment quality and accessibility, including modifying government regulations and adoption of “Substance Abuse Parity” legislation. It’s a sad statement when a patient is involuntarily detoxed because she cannot afford the clinic fees and there are no other clinics, public or otherwise, at which she could afford treatment. Simply put, we feel that it is unconscionable that in such a rich country, individuals should be denied necessary medical treatments due to inability to pay.
