Home » Side Event: Literacy and the Rights of People in the Opioid Agonist Treatment

Side Event: Literacy and the Rights of People in the Opioid Agonist Treatment

Organized by The Médecins du Monde (International)


Judy Chang – International Network of People who Use Drugs, Christos Kouimtsidis- National Coordinator for Addressing Drugs in Greece, Andrew Scheibe – UNODC Consultant, Dr. Richard Healey, PhD, Christos Anastasiou – EuroNPUD, Alison Crocket – Head, Whole Systems Unit, Drug Policy Division, Scottish Government, Duncan Hill – Specialist Pharmacist in Substance Misuse in NHS Lanarkshire (NHSL), Paula Kearney – Community Development Worker, Ireland


Wednesday 15th March 2023


Judy Chang –  International Network of People who Use Drugs (co-chair): There is treatment exceptionalism for people who use drugs. One which does not respect our fundamental rights, nor equity, as current treatment treats us as subjects to control rather than as any other population that has a right to health. I’m really pleased to be co-chairing this session. Of course, we’ll have a panel of speakers that will be sharing their perspectives and recent development of tools from both practitioner and client perspectives on a team. And of course, these insights will be critical to listen to, to make the treatment system the way it should be. so I’ll just pass over to my co chair. 

Christos Kouimtsidis – National Coordinator for Addressing Drugs in Greece (co-chair) : Hello. I’m Dr. Christos Kouimtsidis. I am the National coordinator for addressing drugs in Greece. I’m an addiction psychiatrist in profession and I practice in the UK and I have the policy role in Greece. It is a great honour for me and Greece to co sponsor this event. Part of our efforts to meaningfully involve the civil society into the development of policy implementation and evaluation is not an easy process, I have to say.  I’m very pleased for today’s event,  the starting point for me is the provision of treatment for people who have a drug problem, or substance use problem.  It is not a charity from the part of the state, it is an obligation. It is an obligation that relies on human rights and access to health .  The balance between the regulations that control the professionals, and the rights and responsibilities of those receiving treatment, is at times delicate, and relies on clear rules, information and mutually agreed terms.   In several countries this is called a care plan,  in other countries it is called a treatment plan, whatever it is, clear rules are important and to that effect, including  the initiative that the civil society has taken to that effect. In today’s event, I hope that will contribute to that discussion. So I give it back to Judy for introducing the panel members.  

Judy Chang (co-chair): First off we have Dr Andrew Schreiber, who will be joining virtually, he is a medical doctor by training, who works in harm reduction research, programs, and policy in South Africa, and the region.

Andrew Schreiber-  UNODC Consultant: Thankyou for letting me join today, its fantastic to be part of this session, I’m going to speak a little bit around the opioid agonist therapy training programme, developed by UNOD and WHO, and as we know, dependence contributes significantly to morbidity and mortality. and the use of contaminated injecting equipment spreads the blood borne infections, particularly HIV and viral hepatitis. And we know that opioid agonist therapy is very effective for the treatment of opioid dependence, and is an effective harm reduction intervention.   We know that OAT improves health outcomes and social outcomes, and it also can improve people’s adherence to antiretroviral therapy  and other chronic medications. There is very good guidance available on how to implement opioid agonist therapy in a range of contexts, guidance brought by the World Health Organisation, UNODC, and also collaborative guidance on how to develop these interventions. and provide them in partnership with community organisations and networks. However, despite this guidance, we know that coverage of OAT is really far from what is needed. The 2022 global state department action shows us in this map presented on the screen just how few countries provide opioid agonist therapy. Those that are grey there’s either no data or OAT services, and of the light green that there’s only at least one OAT service in a community setting. The few countries that are dark green are where OAT is available in the community as well as in prison.  Looking at data from 2016 17, at that stage there were only 20 countries around the world that had at least 40% coverage of OAT, and we know that the 2025 targets for the Global AIDS strategy is to provide 50% of people with opioid dependence, with access to OAT.  So a huge significant scalar is necessary for public health impact. around urban dependence and HIV. This training programme is based on a tool that was developed collaboratively between UNODC and WHO,  and it’s intended to support professionals to establish and deliver evidence based opioid agonist therapy. Its aims is to provide practical guidance on how to start, establish, roll out, and sustain quality services, and it’s focus on OAT in the context of HIV or hepatitis programmes or in drug treatment centres it’s important to note it’s not intended to be a clinical training because that can be subsequently is other guidance and resources or clinical training, and it doesn’t focus specifically on the needs of providing OAT in the context of prison or enclosed settings because of the unique circumstances of those environments. The target audience is largely for health policymakers and administrators of healthcare institutions.  The process was established and followed the guidance of a working group that included representatives from UN agencies, civil society organisations and networks of people who use drugs. There was a great taste review of available guidance and other resources. There was consolidation of information from select countries where it is available and is being scaled up as well as synthesis of this information to develop a draft document, which was reviewed, analysed, and finalised. Then there are separate chapters for different phases of an OAT programme. This one chapter looks at some of the nuances and issues of importance for providing OAT for specific populations.  We have included various case studies that give examples of hot countries in different contexts. From Southeast Asia to North Africa, to East Africa have developed and implemented OAT and scaled it up, and shown it to be an effective intervention.  The main content is structured around various how-to questions, providing simple guidance, clear information and also reference to more detailed guidance for specific issues. We’ve included a series of videos that are really testament to how OAT works. We’ve included the voices of people who themselves abused and benefited from OAT, we’ve included some interviews from organisations working in civil society, as well as technical experts and clinicians to reflect their experiences of OAT scaling up provisions.  The module, focusing on the framework, takes an approach of how programmes expand over time, starting with initial groundwork planning ,scale up, moving towards sustainability, and the four main components of an OAT program. Importantly, this includes engagement  for people who use opioids, engaging, and obtaining leadership and support components related to financing the workforce, strategic information and meditations and also looking at elements of service delivery. This training programme initially was developed to be delivered in a virtual format and has since been adapted to enable face to face training. It is based on the tool and the package involves a slide set with training guides, as well as a range of interactive materials.  And in the face to face version. The agenda and programme is tailored to allow more local content and more time for engagement and discussion of key issues. There was a two year development process with initial manual development and training tool development and subsequently, some of the training the virtual training has been held with a group of stakeholders from UNODC as well as from Pakistan, and the first face to face training happened in November last year, Egypt. This year, there’s been a training for stakeholders in the beak to prepare them as trainers for a series of events that will happen in that country.  And later this year there are  face to face virtual trainings in several countries including Zimbabwe, South Africa, Mozambique, India, Lao, Tanzania, and Iran.  So this has been a collaborative process and really grateful for all the organisations and individuals involved.  I really hope that this is something that can be used to increase access and scale up for this life saving intervention.  Thank you very much.

Judy Chang (co-chair):  So it’s fantastic to see these very practical technical guidance tools developed by WHO and UNODC.  And importantly they were developed in partnership with clients.  Next up I’d like to introduce Richard Healy, who holds a PhD from the National University of Ireland.  He’;; be providing a service user perspective, but also  the perspective of a researcher whose research has covered an exploration of narratives of service users through a human rights lens.

Dr. Richard Healey – SURIA:  Thank you, it’s a real pleasure to be here and speak today.  I find myself in a funny place. I have a long to thank methadone for.  You know, I got a PhD through Methadone.  I’m a father through methadone.  It changed my life dramatically, it’s done so many good things for me.  But yet, so many of my friends back home aren’t sharing the same victory in their own lives.  The same outcomes in their own lives.  So we would be from a service-led called THe Service Users Right in Action, based in Dublin, and we have inadvertently stumbled upon a model that has been used by service users, evaluating the services themselves.  SO how did this come about?  It basically consists of service users, former service users, and service providers.  Founded in 2012 due to the non-implementation of the recommendation of the Farrell report (2011).  The Priyadarshi report was another external audit, which was extremely critical of Irish MMT.  SURIA and CAN published “Our Lives, Our Voice, Our Say”in 2018, with the following objectives and main points collected through qualitative interviewing.  This is a synopsis of one of our latest reports “Nothing About Us Without Us”  I noticed that nearly everybody in the community in Europe was identifying with what we were finding in Dublin.  That methadone had become very controlling in people’s lives.  There was no reintegration after methadone in people’s lives.  And we weren;t seeing any of this.  So how did four service users get this done? I’m being asked to translate this model into larger audiences.   And I’m kind of a little bit embarrassed because there’s very little to it.  It was a very simple thing that came about.  Four or five service users, each with about 20 years under our belts of using methadone services in Ireland, we got together, we realised that there was four main problems, with panoptic services in Dublin, mainly: a lack of meaningful relationship with the GP, the frequency of urinary analysis (based on everything), the lack of choice in treatment, and supervised urinary analysis. We were operating on a human rights lens, under the right to health, economic, social and cultural rights in article 12.   It’s primarily methadone clients that we are talking about in Dublin. We found that of those submitting a urine sample, 54% were supervised with mirrors, 51% submitting weekly samples, and 6% submitting samples 2-3 times a week.  62% of clients were never offered care plans.  We found that 43% of clients reported no meaningful relationship or review when engaging with AOD clinicians/prescribers, and it’s totally based on your urine sample. You’re very rarely asked how you are, so that wouldn’t come into it whatsoever. There’s a power imbalance, the doctor is speaking to you as a patient as opposed to someone who is in treatment,  You are seen as someone who is taking medication, not someone who is in recovery.  I wouldn’t see myself as someone who is in recovery, I see myself as someone who is taking medication to allow myself to operate as a pretty high standard in life.  Unfortunately we don’t see a lot of that in Dublin, we find a highly controlled dynamic, including contracts, no quality of life, no reintegration, there’s no good outcomes. What’s ended up happening is having an increasingly large methadone population that’s ageing, with no integration which includes getting housing and a job – whereas receiving methadone in Ireland has stopped people from doing this unfortunately.   84% of clients are unemployed, and 70% see conditions of treatment as a barrier.  This is where I find myself in that ambiguity in my own life, because methadone has helped me, but it’s blocked so many others.  And it’s not methadone.  It’s not the medication, it’s how it’s being dispensed, unfortunately.  Thank you.  

Judy Chang (co-chair): Thank you so much, it’s really incredible research and definitely you know something very much worth disseminating more broadly. I think it’s so powerful, doing the research but also coming from that lived experience at the same time. 

Christos Kouimtsidis – National Coordinator for Addressing Drugs in Greece (co-chair): Thank you.  Now i’m going to introduce Christos Anastasiou.  Christos is from Greece as the name says.  And he’s the representative for EuroNPUD.  I know Christos very well from his work in Greece and our positive collaborations and challenges. But that’s the point of all this, to enter discussions including the times that can be difficult and challenging.  Christos is going to talk about the OAT client guide and the positive solutions to OAT literacy from a EuroNPUD point of view.  Over to you Christos.

Christos Anastasiou – EuroNPUD:  Thank you very much Dr Christos.  We managed to create the first network of people who use drugs in Greece. We managed to connect with all international and European peers and colleagues.   These connections skyrocketed our knowledge and productivity, engaged by the motivation to ensure that services become better, more efficient, and more accessible to customers. Since the beginning of the pandemic we recognised the importance to renew the advocacy, so we started to research for the creation of the outline guide.  The objectives of the project included: To present in an accessible manner the best practice standards for opioid against therapy based on professional guidelines and science.  To describe standards for the provisions of OAT that are consistent with human rights principles.  It also requires that the primary objectives be the health and well-being of patients, not cost or convenience.  To support the value of meaningful therapeutic relationships between people with opioid dependence and their OAT prescribers and the wider OAT team. And finally to develop a shared vision for a new normal for OAT provision based on a dynamic partnership between people with opioid dependence and those who design, manage and deliver OAT services, while also ensuring that service users are involved in every decision-making process that affects their treatment. We developed our client guide based on research from our peers in Canada.  It’s been designed and tailored to be used in different countries.  We’ve worked to secure sponsorship from governments, provide a professional partnership, and this requires a negotiation.  We want to provide people with a great statement about their rights in the information leaflet.    I have confidence that raising issues around treatment quality will not result in treatment sanctions.  Policy makers and clinicians need to better understand that client education is a priority. Clients  may be trying to make an effective change, however their understanding of the drug treatment system or OAT medication may be lacking.  Correct scientific information is vital for empowering people with opioid  dependency to get more out of their drug treatment. They may also worry about discrimination from health care providers.  Informed and empowered clients are best placed to form meaningful therapeutic alliances with their prescribing doctors and OAT practitioners.  Informed and empowered clients can become peer recruiters for OAT helping to reach those who may be uncertain about seeking help. Informed and empowered clients can operate as quality champions within OAT services, and can become effective champions of OAT with the general public, and to form groups aimed at their growth and reach to others in need.  Quality and standards for the delivery of OAT is well described in so many UN and other technical guidelines.We know that there are medications that are highly effective, and we know what works in terms of dosing, psychosocial support, and other empowerment strategies. We need people in OAT to be well informed and engaged in their own health care.  Having drug user advocacy groups for people in OAT is important.  Thank you.  This is the team that makes the OAT project happen in seven different languages…and most of them you would know.

Alison Crocket- Whole Systems Unit, Drug Policy Division, Scottish Government:  

So it’s really just to welcome this short video that is going to be shown by a guy called Duncan Hill.  There he is the very man.  Just to say that we have to in Scotland, though, introduced as part of our drug, medication assisted treatment standards. and, and they really are based on a number of principles which is about creating an environment where people can access services quickly, where they can access them with dignity and respect, where they can have some choice and where they are given the support and their well being as properly considered.  And I do think that this initiative will very much contribute to our success and the Scottish Government to being able to successfully implement our standards so just to say very much welcomed this initiative, very much welcome the doing until it works. I look forward to seeing them rolled out in Scotland. 

Duncan Hill – Specialist Pharmacist in Substance Misuse in NHS Lanarkshire (NHSL): 

In Scotland we’re fairly fortunate, we have specialist pharmacists working in all but one of the Mainland Health Boards, at the moment, so there’s 14 of us. We also have a wider network beyond that. There was a paper written by the Scottish government and SFD called “Staying Alive” which started off looking at tackling drug related deaths in scotland. As we know we’ve got a fairly substantial challenge and our rates of death are tragically high, and are three times higher than the rest of the UK, and multiple times higher than the rest of Europe.  In the “Staying Alive” document, it mentioned, developing or having a leaflet for patients so they can get informed decision making and what treatments offered and what the benefits were. This was backed up when the  Medication Assisted Treatment (MAT) standards were developed, there were 10 which Scotland launched in the last year and now actively working towards.  After peer group consultation, they came back and they were formulated. And standard 2 of this, looks at patient informed choice of treatment. Again, when we looked through the leaflets that all the services and drug companies have, nobody has a quick leaflet.  Some were very technical, some simple. But nothing that combined everything all together.  We were really keen for something to tick all the boxes, where we could give information to all the patients where they could actually go away and have a think about what they would like to be treated with.  So the ADP were very keen on using this, having all the information combined.   We went back to the drug death task force, the Scottish government, and the local ADP, and nobody in Scotland had a combined leaflet and treatment options.  However, one of the people I had reached out to had recently reviewed the EuroNPUD guide, which was still at the final stage. THey were quite happy for us to adapt it for Scottish audiences, including some of the contents and contacts.  This only required a few minor changes. We kept the essence of the leaflet as ‘by peers for peers’. We contacted a couple of Scottish government bodies and organisations  and NGOs and got their agreement to have their contact details on the back of the leaflet.   This takes the patient through a number of different options and treatments that are available, and we’ve also kept some of the ones that are available in Europe, but not available in Scotland, such as slow release morphine.  But again, this is something we might end up moving towards.  So the fact that we already highlighted that as potential treatment, shows that we are open to providing this to patients going forward. 

Judy Chang (co-chair):  That’s great to hear about how the resources are being used. So now turning to Paula Kearnery from Ireland. As our last speaker she’s a community development worker who has a history of incarceration, and is now a human rights and drug policy advocate pushing for better access to health and rights for women who use drugs.  Over to you Paula.

Paula Kearney – Community Development Worker, Ireland: I’m passionate about human rights and drug policy changes for people who use drugs, and particularly women who use drugs.  For over 20 years of my life, I was also in active addiction myself, and I have been on every OAT available in Ireland.   We’re very fortunate in Ireland that we do have OAT, because I recognise that many countries don’t.  I’m fortunate that OAT has helped successfully transition off of illicit opioids. I wouldn’t have gone to university to get the qualifications required for me to work in the sector I work in. Buvidal allows people to move on with their lives, and not have that daily struggle of getting up and going to clinics, and gives you your life back.  You no longer have to explain yourself to, you know, your boss. There are extra struggles for women, who are stigmatised really badly,  even further than men.  Women end up internalising their shame, which makes it very hard to move on with their lives.  Once they register with their OAT, there is a potential fear that it may shine a light on their mothering skills. It’s perceived as the person who is using drugs is like a bad mother, when that’s not the case. Flexibility in accessing OAT/AOD services for women is also an issue – many face barriers when entering residential treatment – even if there are two parents, there may usually be addiction on both sides.  Parenting is an ongoing thing – a mother might also be the breadwinner, to take care of the responsibility of raising a family, and also their own and their partner’s habits and other expenses.  There might be other informal ways of getting money such shop lifting and even sex work.  This leaves them open to BBV, jail time and criminality.  If someone is imprisoned, then their weekly takeaways are taken away and therefore risk of relapse and risk of lower tolerance and overdose risk. That little bit of sovereignty and normality is taken away from her.  Women WUD, experience more gender based violence, they’re not seen as victims, or innocent victims, and this stops women from actually reporting their abuse experiences because they feel like the chances of getting in trouble if they were to report their situation.  It’s not as straightforward as it would be for a man who uses drugs.  There is no escape for women used in domestic abuse situations – women’s shelters dont take in women who take drugs in Ireland.  The negative repercussions for women who use drugs is really bad, such as those who end up in emergency accommodation (and might be asked to voluntary hand over their kids to family members) its difficult to get their children back  – they no longer fit the criteria to get them back (i.e stability and 3 bedroom houses).  There needs to be services tailored for women who use drugs,  so overcome the barriers that women who use drugs face. There’s not enough of them.  There’s also a huge homeless crisis in Ireland at the moment, and the negative repercussions for the women that use drugs  within that is really bad. A Lot of women end up in emergency accommodation and they might be talked into ‘voluntarily handing over the care of their children to other family members…but then when it comes to them getting their children back, they’re deemed as unstable because they are living in emergency accommodation, and no longer meet the requirements for getting their children back…a three bedroom house, or whatever is required.  It’s a sort of catch 22 that they cannot go back and get their children.  We are very fortunate in Ireland to have OAT services, but  women should have the right to choose the treatment of their choice. However, some doctors don’t listen, autonomy is not there, patients can’t make the choice for themselves. Methadone is seen as the default option because it is the cheapest one.  As much as we have different alternatives, it’s predominantly methadone.  When drug policies are being discussed around OAT patients, there needs to be a focus on the additional needs of women, such as childcare services that need to be provided.  This year’s theme for International Women’s Day was to embrace equity , and we need to consider that there are additional needs for women.  SO if we want to have a fairer policy for women, we need to embrace equity. 

Judy Chang (co-chair): I think we did a really good job with time we’re pretty much exactly on time. So thank you so much for all the years for the excellent interventions. It’s also staying within the timeframe. I think there are a lot of important  insights and shows the range of value that peers bring in terms of research, technical resources and technical expertise that is grounded in lived experience. Finally I really wanted to emphasise your point as well, Dr. Richard Healey,  when you talked about the ambiguity. I think as peers we are caught in this, you know, of course being really grateful and appreciative of having access to OAT< which many people do not have it (OAT), but we are also invested in critiquing it, because we want to make it better because there are time where it can be very punitive and all about control.  So it’s important to emphasise partnerships with stakeholders to really improve the way OAT programs are designed and delivered.  Thanks for your input to this excellent side event.

Christos Kouimtsidis (co-chair):  Can I have one minute? This just came to my mind. As a doctor you’re referred to a lot about your relationship with patients who are experiencing stigma  and so forth.  Doctors can also experience stigmas in the healthcare field as AOD clinicians,  working in these services.  We’re regarded as not as good as our colleagues.  Unless you’re trained in your field, you can easily be guided by your own preconceptions, you might not be confident enough to navigate on how to mitigate the risk or side effects of the medications, and how to best navigate patients through the healthcare system, and what works best for them. So education, and training for doctors and clinicians providing these health services is crucial. There needs to be more advocacy around these issues, and work together in this.  Also the system where these services operate, if the system is looking for a mistake from the side of the health professional, to criticise them and  to take away their licence, then of course they will be  very very conservative in cutting corners or taking initiatives to address their needs. It’s not “you”and “us”, we’re both in this together to provide better services, better training, and better understanding and collaboration.  Thank you for inviting me to this amazing event.

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