Users’ Voice decided to begin profiling some of our long-term activists, and since few are women, we began with one of our greatest!
“I came to advocacy for the reason that I believe many methadone advocates do. Methadone patients are never given the opportunity to feel good about themselves, generally what they read about themselves is very negative.” – Joycelyn Woods
I started this journey by accident when I was told about a meeting at Rockefeller University. Most of those attending the meeting were methadone patients and then, the small community-newspapers in New York City were anti-methadone. This meeting would grow into one of the first methadone advocacy organizations The Committee of Concerned Methadone Patients (CCMP).
I would say that I had a real epiphany at these meetings because I realized that I could seize opportunities that I had not thought I had. I made the decision to go back to school and get a graduate degree and even went into neuroscience “because I came to believe that I had the right to live and work where I wanted to and that I had the support to back it up.”
A group of us worked hard for CCMP, who were very much involved with the NYC Transit Authority Case in which several methadone patients were fired for taking methadone. Another was the Harlem Medication Case over an inferior methadone formula that was being used in one of the clinics. CCMP got a court order to stop it. And we registered methadone patients to vote and visited newspapers to provide positive articles about it, and talked to politicians and policy makers. This was during the 1970s when everyone was “doing their thing” so we thought we should have that right also.
By 1988 with the AIDS epidemic growing in New York City and very little being done on the behalf of users, it was decided that it was time for another advocacy organization. This was how the National Alliance of Methadone Advocates – NAMA came into being. It was patterned after the growing mental health advocacy movement and their organization the National Alliance of the Mentally Ill or NAMI. We are now in our seventeenth year. NAMA has survived on a budget of about $130,000, for entire seventeen years. But money is only important when that is what you want and we at NAMA don’t want money – we want civil rights and respect. During the first few years NAMA was New York based and only a small group. However as word got out NAMA was contacted from other states and similar groups were started. As methadone expanded in other countries NAMA was looked to for guidance and the result was an affiliation of fourteen international groups. Today there are close to 50 groups that are considered part of the NAMA network and while each may have their own separate mission they must follow the goals of NAMA.
I would say that the greatest accomplishment of NAMA was when patients were included in policy making. Prior to NAMA methadone patients were never asked about their issues. Today a number of our chapters meet with their state methadone authority and have been involved with drafting state regulations. I helped with the national regulations and insisted that patients be able to have 30 day take home privileges and that each clinic should have a mechanism for patient to be involved in clinic policy.
NAMA has also been involved in ending some treatment malpractices that were common in the US. In 1992 D’Aunno and Vaughn published a study in JAMA on methadone treatment practices. They found that one-third of the programs they surveyed did not tell patients what dose they were on. The practice called “Blind Dosing” was done to disguise low dosing. Today no clinics blind dose patients and most professionals would not even consider defending it. Around the same time another survey found that the average dose was about 37 mgs/day, which is far from adequate. What had happened over the years as rural programs opened they hired staff from “drug free” treatment who believed that less was better. This has now been reversed and the average dose in the US has increased to almost 60 mgs/day.
Some issues remain the same and the criminal justice system has always been backward when it comes to methadone. Many jails do not provide methadone if a patient is arrested and there have been a number of deaths because of this. It is not uncommon for Parole Officers to make, getting off of methadone, part of the probation or parole. If you don’t, they will put you back in jail. We would not allow this to happen to animals but users have been so stigmatized that this is not even viewed as inhumane treatment. It is actually worse because it is depraved indifference over the welfare of another.
And now with thirty day take homes the clinics have created a procedure called “Call Backs”. This means that at any time the clinic can call you and within 24 hours you must report to the clinic to bring in your bottles, both empty and full for them to count. And you have to have taken your dose on the day that it was prescribed or some clinics will revoke your take home privileges if you have taken your medication not on the day prescribed.
As I see it there will always be a lot of work for advocates because just when you think you have stopped the program from doing horrible things to patients they devise some new torture.