National Alliance of Methadone Advocates

[Rokki]

Alan has asked that I write about NAMA and the things we have gone thru and what we have accomplished. Being as I love to talk to anyone who will listen to what a Patient Advocate has to say and be open minded enough to want to know that patients should be involved in their own care,regardless of the disease.
NAMA was started about 20 yrs ago,before my time as I have only been with them since 1998. Joycelyn Woods has done so much for the methadone community and for patients everywhere. She,of course,is my Mentor. She has so many stories and it is she who should really be writing this,but I will stumble my way thru    NAMA started out in New York City and Joyce never expected it to become what we have today.

    Years back before the Feds changed the regs here in the USA a msg board was started at Calyx.net. Thanks to Nick patients from all over the planet were able to voice about the awful 3rd class citizen care we were recieving. The powers that be were looking in and they lsitened as everyone from all over were saying the same things about the awful care and how regs needed to be changed. Thanks to patients voices everywhere things Did change. As yrs went by NAMA grew and it is now and International Org with Affilates in Macedonia,Bulgary,Auatralia,The UK     and many more. Most of our Chapters here in the US have been fortunate to get on their own States Methadone Authority's Advisory Boards and attend meetings and help with policy changes in their areas. Like here in Calif. They no longer re-use take homes bottles and I am working on a serious water issue and I have the States backing on this and it should be in the new regs when they come out this yr. We attend State AATOD meetings,we attend as many Conferences as we can to help educate others about this fine medication,terms are a serious issue and we work on that<me mostly as I have been dubbed "NAMA's Language Police"  G> We write many LTE's,we go to County meetings to help end STIGMA and Nimbyism. It's been a long hard road and just about everyone of us has been singled out at our own programs because we are not afraid anymore to voice those opinions. I know I lost all my take-homes due to trying to educate fellow patients. I was,and still am,a thorn in the local programs side. I no longer go to the local clinic as my own Dr now prescribes my meds as I'm a Chronic Pain patient. I am one of the lucky ones. I never forget a day of what it was like to stand in those lines and never knowing what to expect when you finally got to the dispensing window. The programs here are less then adequate. Yes,there are some good programs in the USA however they are far and few inbetween. Do undestand that the staff that some of these places hire were saying last week"Do you want Fries with That?" Here in Calif Counselors are to be certified in order to work in a methadone program. That was something NAMA helped with.  So many of them are 12 step based and as we all know Nothing is One Size fits All and 12 steps may work for some,but methadone is a whole nother issue. The stigma attached to the "M" word is unsurmountable and many still think that methadone was named after Adolf Hitler<Rolling eyes>. Patients and ex-patients are usually culprits in spreading stigma and bad info and myths about methadone. Not because the medication didn't work cuz it did and does,but due to the treatment from un-educated staff. That is what leaves the bad taste in our mouths. We are never asked to be involved in our own care and are treated like children who can make our own decisions or take a simple medication properly. That is the penal mindset"Once a Junkie always a Junkie"  NOT!!! We are very intelligent people. I mean look at what we have had to go thru and how creative we were while using??? Knowledge is power and once we have that knowledge the fear that lives in every patients mind will almost totally leave. Now all Methadone programs here need to be Accreditated by a Government appointed agency. It was supposed to put our care in a more medical like setting. It has failed us miseralbly. CARF has rubber stamped more bad programs and refuses to work with Advocates. Even tho it is their own guildelines. The joint comm programs are better ones as it's harder to be accreditated by JCAHO then CARF. Each Chapter is guided by a Regional Director and the Chapter Coordinator<Myself>. We have a code of Ethics,a Board of Directors etc etc. However we get no funding. NAMA exists solely on membership dues and donations. We have been promised monies,but never saw them. All of us work out of our homes and get by with what we have personally. It's our passion that keeps us going and NAMA has plenty of that. We hope to unite patients everywhere and educate them and let them know there is a better way for methadone treatment and that"Together We CAN make Change"

   You can check out our website at  www.methadone.org   You will also find the largest methadone msg board on the internet today"We Speak Methadone" which is run by one of our VA Chapters. Some States still do not have Chapters and other may have 3 to 5 Chapters in their states and we grow and grow. Joyce has helped get us into various arenas. We now have contacts at CSAT/SAMHSA/AATOD and we continue to network and grow. You can even shop at the NAMA website,$$ goes to NAMA,and end up with a Great Hoodie,T-shirts,coffee mugs etc...It hasn't been an easy road,but with all of the hard work that each Chapter and Board member does and all of our passions we continue to working from our hearts and kitchens. Our persistance has paid off a little here and little there and we expiernce set-backs now and again,but we never give up cuz we all know that..."Together We CAN Make a Difference and Together We Can MAKE a Change"

Thanks Alan 

Did I cover enough?

Rokki

[simon]

Rokki,
It makes me very sad to hear this in my blissful ignorance I have looked at treatment in Europe thinking over the pond everything would be dandy. I just assumed that with Nyswander and Dole and the work done there that you would be miles ahead of us. It's not to say that everything is rosy here it's not. It saddened and surprised me to read this account.
regards

Simon

[Alan J]

Dear Rokki,

Many thanks for your informative post. Sadly the time has yet too come when we become the singers, the poets, who will sing our stories and herstories to our peers, we will only become able to determine and share our past when we are also able to determine our future.

Nama, the'group of 11', our US, Australian, European, Asian, African and Latin American peers and predeccesors as well as our mentors in the uk who share a rich and diverse tapestry of tales that together inform our knowledge of our collective past, present and future experience.

The role of NAMA as an inspiration to the founders of the Alliance and those who have taken up the beacon of user led advocacy in the UK means that many new UK activists need to learn from their predecessors, peers and fellow advocates/users, about our movements international, national,regional,local, multi cultural and other 'histories', celebrate our differences alongside our communality or risk being consigned to the dust bin of history, co-opted and a sphectre of what we could have been. Echoes of Brando's ghost voice "I could have been a contender" haunting our waking days and dream times.

Many thanks Rocki for sharing your NAMA experience with us. Please give detials of your links, web site and work so we can share your knowledge and invaluable experience to further our shared objectives and work.

In England we have been able to derive benefit's and develop our advocacy model with State, regional and local 'govermant' support and funding as a result of having a national health service, maybe your time will come the nbext.. Indeed we have aqquired considerable expertise in how to go about this model of development. In the US you have extensive experience of pioneering and consolidating local and community support, something we, in the UK, are hesitant and possibly culturaly inhibited from pioneering. This is where you have much to teach us.

How do we solicit and develop non user comunity support? In overtly hostile community conditions? How do we generate funds from events, barbecues, jumble sales, car boot sales and other independent funding streams?

There is a 'civic culture' in parts of the USA that we have in the UK but lack the experience, possibly the 'cultural knowledge,' to engage in.

This is where we have so much to learn from NAMA. Let alone your long term experience of advocacy which predates and inspired many of us over the preceeding years.

I would love to be in the posistion to find fund's so that Jocelyn, yourself and a few others could attend the conference this year or failing that next, sadly the event has now outgrown us but there may be a way?

Respect and I would welcome a regular 'NAMA' update from Jocelyn or yourself to the forum keeping us up to date on the issues and tactics NAMA deploys in it's advocacy role as the 'irritant', 'Within the Belly of the Beast" .

Respect and best wishes as ever, Alan J.

[Rokki]

Thanks so much,Alan 

Let me see if I can answer some of your questions.  NAMA's website is  www.methadone.org   There is a msg board which is now the largest methadone msg board on the internet today and it's called "We Speak Methadone". You can find that from our home page. We attend meetings on a Local,State,National Level. I know Joyce has helped some of us get into being on various Gov committees. Like I was on the Clinical Review board for Bup. It read like a Bad methadone program and thats exactly what I told them. I think I mentioned that I am an Army of one. Most NAMA Chapters are. We try to get our feet in the door everywhere we can. Walter,NAMA's Vice President,is the one who came up with the Certyified Methadone Advocate Training and it has been co-signed by both CSAT and AATOD,but then cuz it was such a big hit they had no choice but to do so  <G> Since then we get inquiries about taking it on the road so many more can take it. We don't get any funding,like I mentioned,so that is not in our realm as of yet. Walter also had some of us get involved with doing Grant Reviews with SAMHSA. I did it one year and had hoped to do it again last yr,but they didn't need as many reviewers as they were not giving as many grants. I suppose this year will be empty as well. The more we show our face and the more we get our views across the better we have a chance of getting someplace and folks know that We at NAMA mean bizness. As far as getting everyone on the same page. It's a HUGE task and it is Poo Poo'd at every level,but we don't give up and persitance keeps us knocking down the walls of NIMBYism and STIGMA. We do our best to stay on top of whats going in the methadone community and we front off the media at every given chance. LTE's can be a powerful tool.

And Simon,isn't always we see things as Greener on someone elses pasture  Thats untill we hear the real deal. I know patients/users here in the US who think users/patient in the UK got it going on til they find out that many places are very low dosed mantained,even tho there is so much data that shows that you give a patient enough methadone for them as an individual and that Nothing Is One Size fits Alll. Or that penal attitude is Universal and not just in our backyard. Dr Dole says that Each patient is a Hero in their own right for jumping thru the hoops we go thru to mantain our recovery with this medication. This is NOT what the good Dr's had in mind for us! Dr Dole doesn't get around much these days and even at the AATOD conference now his Youngest Son usually takes his place at the Podium on the Nite of the Awards Banquet so he is very much missed. You can find an older interview with Dr Dole at  www.atforum.com   There is also a great deal of info there like what Not to take with methadone or meds that interact wrongly with it. It is funded by Mallenckrodkt so I tend to be a bit suspiscous,but thats just my nature not to trust pharmacuticals     There is a new Pharmacutical on the list now,Vista Pharm,and from what I understand the product is less then adequate...It appeals to Providers cuz it's cheap. Well,you get what you pay for and Cebert/Roxane would be your top line of meds with Mallenkcrodt running a long 2nd and Vista Pharm at the bottom of totem pole. Providers who switched to Vista found that 80% of the patients needed an increase due to the change over. What does that tell ya??? The dry meds they make are even worse. The inert ingrediants are hard on us older folks stomache and for those of us who have acid reflux it's a nitemare. So are Mallenkcrodt's dry meds. Actually the liquid also tore my stomache up and I found when I went to Cebert Dry meds that my acid reflux seemed to heal up. Not alone as I was taking Protonix at the time as well.

   I would love to be able to attend something on your side of the pond and I'm sure Joycelyn would too  She is really busy with stuff right now so I tend to leave her be and try and wing stuff the best I can while gving her space,but she is so full of knowledge...so much more then I....I will pass along your msg to her,Alan 

  I really enjoy this site 

Thanks again...You and I go wayyyy back and it would be so grand to finally meet you and see 1st hand how well The Alliance has done..

Love and Respect

Rokki

www.methadone.org

Methadone is Medicine