Do You Know Your Rights? - Kristi Wyatt, Rights Advisor
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 methadone!
To Home Page
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:
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 level.
To Home Page
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.
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 also.
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.
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.
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.
To Home Page
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 programs.
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?
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.
To Home Page