Greek Drug User Union Fights Back against Closure of First Drug Consumption Room

Hello brothers and sisters! I am Efi Kokkini, co-founder and Chairwoman of the Greek Drug & Substitute Users Union, a union created with tones of difficulties and zero budget in a country that has been financially and ethically collapsing.  The union began with the hopes and dreams for a fairer future for us and the next generation of people who use drugs, (against a background with no drug users movements) but mostly with the commitment that any harmful decisions concerning our community would crash against our wall of resistance and fight – in a State that considered drug users incapable to react.

Having political systems which never had the slightest idea about Harm Reduction policies and practices, we demanded systematic change starting with interventions and suggestions on training and an understanding of the proven effectiveness of Harm Reduction in society. Our Union, in meetings and discussions with the President of OKANA (Organisation Against Drugs) continually requested a Drug Consumption Room*, concerned about the zero hygiene our mates were experiencing while injecting on pavements and streets. We had no safe or sterile materials to prevent exposure to several types of viruses (mostly HIV and Hep C) and lacked health services to take care of open wounds and abscesses or check general health and test for viruses or infections.

When the announcement was made that the first DCR called ODYSSEAS opened its door to the public on October 3, 2013, it was a relief and a victory for us. Finally, in the Greece of misery and austerity, a miracle had happened, a miracle that updated the image of our country in the eyes of many worldwide organizations and the press. But the miracle did not last..not even for one year. Suddenly, we were informed that the DCR stopped providing its central services leaving these people that thought they finally found a shelter, to return to the streets and their usual, well-known dangers feeling once again cheated and deceived. We wrote a letter as an initial act to try and get some answers to ‘why’.  If we feel misled and patronized and the answers we get are not well-grounded, we’ll get even more furious. If we do not receive a commitment about a quick re-opening of the Greek DCR, we shall declare war!

Efi Kokkini, co-founder and Chairwoman of the Greek Drug & Substitute Users Union; below letter to the president of OKANA, translated from Greek to English.

This is the letter written by the Greek Drug& Substitute User’s Union, co-signed by 5 more organizations (PRAKSIS, POSITIVE VOICE, PROMETHEUS, DIOGENIS Association, CENTER FOR LIFE) and was addressed to the President of OKANA (Greek organization against drugs), to the National Drug Coordinator, to the Minister of Health and the Deputy Minister of Health. The main issue has to do with the ban of the Greek drug consumption room, ODYSSEAS.

* Drug Consumption Room  is a safe, legal and clean place with health professionals and medical equipment on site, where people can use their drugs without fear of arrest and get sterile drug using equipment and health and harm reduction information.

Letter Demands Re-Opening of DCR

September, 2014

Mr. President of OKANA,

We bring to your attention this letter with the opportunity of the closure of the pilot Drug Consumption Room, ODYSSEAS. As users but mostly as representatives of this community that has no other way of expression, we are extremely frustrated by the fact that ODYSSEAS, one of the most indispensable and crucial units of OKANA, has been shut down with quick procedures, turning its back to all users and dooming them to constant insecurity and severe danger. It is even more important, especially during this period, that Athens experiences an outburst in terms of infections and a rise in homeless drug users that inject in very harmful and dangerous ways.

We also want to protest against the fact that we haven’t received any previous information concerning the background of this decision. Our only sources were some press releases, reporting that ODYSSEAS was shut down by an unexcused and sudden order of the Public Prosecutor. We were shocked and utterly upset. Therefore we would like to know all the details behind, which was the accusation that led you take this decision and shut down the unit and also if you did everything within your powers to resist on these accusations, to fight in order to keep the unit open and most of all, to get the DCR fully legalized, a pending issue since the beginning of its function. Additionally, having access to some non-official information about what has happened but also knowing the non-stop war that OKANA fronts, coming from conservative and antiquated perceptions concerning treatment some policy makers embrace, we would like to know what was the answer that the Ministry of Health has given to you in possible calls of yours about ODYSSEAS. The Greek DCR which was very well received by the world civil society as it was a radical movement regarding the Greek background, made us proud because despite the economic crisis, public opinion’s taboos and serious lacks in harm reduction interventions, it was an exception that gave hope to other countries too. It seemed that the way was opening little by little for more DCRs in order to save more lives, also leading more people to join substitution services.

Our feeling is that nothing was done from what it should have been done. OSYSSEAS kept functioning for months without legal cover, however, the ex President of OKANA, Mrs Meni Malliori, feeling the urgent need for safer use and having ensured the structural funds by the EU, backed for this unit – even under these difficult circumstances as it was now or never. What do you really think about programs that run under community and institutional funds coming from the EU that they start but remain uncompleted? After her removal we feel that no effort has been made by the legal department of OKANA to ask the Ministry of any legal amendment or any other legal procedure that could guarantee the function of the unit. If it has been and we are not aware of, we ask you to inform us about it.

Finally, while you have committed that we would have a collaboration, no meeting has ever occurred between us even though we have requested for it. For the first time during all those years, we haven’t even received a reply to our calls.

The war against OKANA and the resistances produced by the progressive actions that introduces in the society are caused by the way the organism itself uses or doesn’t uses all its means in order to inform about the necessity of such interventions, the understanding of its role and the outcomes of such interventions. Finally it seems that this lack of strategy doesn’t only affect the image of the Organization but its costs go far beyond financial limits.

We wait for some answers concerning all our questions that are connected to real lives, who’s future is based from such decisions  taken by people who finally need to wonder if they really value drug users as equal human beings, if they really care about our lives and what is the future they plan for our population.

With full indignation

Greek Drug & Substitute Users Union


Co-signed by:

Hellenic Association of People living with HIV POSITIVE VOICE
Hellenic Association of Liver Patients PROMETHEUS
DIOGENIS Association, Drug policy dialogue in South East Europe.
Center for Life                                                                                                                       PRAKSIS

To read a news item on the opening of the Greek Drug Consumption Room from The Fix’s website click here

Posted in Campaigns, Europe, Hepatitis C, HIV/AIDS, Injection Drug Use, peer insights, peer involvement, Publications and Tools | Tagged , , , , , , , | Leave a comment

BOOM!!

Missed hitting the festivals this summer? What? So you didn’t go BOOM in Portugal?  The hippest, most eco friendly (it is supposed to have a zero carbon footprint) festival in Europe? Well, lucky for us, our Adam Wallace went and has returned to tell us all about it.

 If you have a story to tell, email us at blog@inpud.net

Some reflections on Boom 2014.

Boom is a week long, psy-trance festival held bi-annually in Portugal. Boom sells 25,000 tickets in advance, and there are likely several thousand who bunk into the site one way or another, [the security fence is nothing like the Berlin Wall style construction which surrounds Glastonbury’s site], which is about the fifth the number who go to the  money-festival which Glastonbury has become. Boom’s site is also much, much larger than Glasto, which makes for a much more chilled out atmosphere. The Boom site is also run on permaculture principles, making use of things like compost toilets, which recycle all the shit from the festival goers into soil for use on the farm site, as well as solar energy and recycled materials to build the stages and other structures.

Pictures Courtesy of Boom -Click for link to gallery

Pictures Courtesy of Boom -Click for link to gallery

 

The festival takes place at a truly beautiful site around one side of a large freshwater lake at Idanha-a-Nova, in Castelo Branco, in central Portugal. The site is ringed by small sun-baked hills covered with oak and olive trees, which just adds to the sense of tranquility and positive energy. Its divided into several sections, according to the activities going on there, but wherever you are on the site, you are no more than a few minutes from being able to strip off and dive into the cool, refreshing lake water, which was an absolute essential for those of us from Northern Europe, unused to the intensity of the Portuguese afternoon sun!

To my somewhat psychedelic-ly influenced eyes, the arrangement of the Boom site seemed to mirror the transformational spiritual journey which is so much part of the ethos of the festival. We Are Love was the slogan of Boom 2014. At one end of the site was Funky Beach, where people seemed to spend the day drinking expensive cocktails and swimming in the lake, then moving around the shore you passed through the Liminal Village, which hosted lectures and discussion groups on a range of subjects from reforming the drug laws to communal living.

Boom festiva; is in a beautiful location that curves around a lake -Pic courtesy of Boom; click here for link to gallery

Boom festival; is in a beautiful location that curves around lake Idanha-a-Nova, in Castelo Branco, central Portugal -Pic courtesy of Boom; click here for link to gallery

Next was the Alchemy Tent and Dance Temple, which pumped out a constant beat of psy-trance music, [apart from a special guest appearance of Anoushka Shankar, which was exquisitely beautiful to listen to], and which was where most of the dealers selling substances were operating. Moving on past the psychedelic experience, you came to the other end of the site, where there was the Sacred Fire and Healing Area, as if those who had experienced altered states of consciousness could find ways to make the transformation for the psychedelic state more permanent through meditation and other spiritual practices.

The 2001 decision to decriminalise drugs in Portugal created a completely different atmosphere, and response to substance use, within the festival site.

The 2001 decision to decriminalise drugs in Portugal created a completely different atmosphere, and response to substance use, within the festival site. There was no overt police presence on site at all, [during the week I was there I the only time I saw police they were driving through the site in a car], although during the talk on drug reform at the Liminal Village tent, it was said that the police had targeted known dealers off-site in order to avoid the need for a presence on site. Some festival goers I spoke with were happy with this arrangement, as in 2012 the festival was flooded with cocaine, which had resulted in a rash of thefts across the site as many resorted to robbing other festival goers tents to raise money for more coke.

Click here for link to Boom website and gallery.

Click here for link to Boom website and gallery.

 

Apart from the lack of visible police presence targeting drug users, the most interesting, and obvious differences to any similar gathering in the UK were to be found in the CheckIn and Kosmicare tents. Kosmicare was a dedicated space aimed at providing among other things, a safe and supportive environment anyone experiencing a difficult and intense reaction to any substances they may have consumed. The volunteers working their were also trained in First Aid and there was an on site hospital which could provide emergency medical care. Working alongside Kosmicare were the CheckIn, whose volunteers manned a stall which offered harm reduction advice on commonly used substances, answering questions from festival goers, and giving out advice pamphlets in several different languages, condoms, packs of two disposable tubes for snorting powders, condoms and ear-plugs. Most significantly CheckIn also ran a substance testing service, usually from 8pm until midnight. People would give a small portion of the substance they had bought, [one quarter of a standard LSD blotter was sufficient, or a small fragment of any tablet], which would then be tested, and the results revealed to the individual two hours later.

Boom was aiming for a zero carbon footprint, even the toilets were environmental. Pic courtesy of Boom -Click here for Boom and the gallery of pictures.

Boom was aiming for a zero carbon footprint, even the toilets were environmental. Pic courtesy of Boom -Click here for Boom and the gallery of pictures.

 

Sensibly, CheckIn did not publish lists stating whether certain pill or blotter designs had proven to be MDMA, LSD or otherwise, as in many cases, the same designs tested positive for different substances. However, “Alert” notices were soon appearing across the festival site that DOX and NiBOME had been discovered in samples of supposed LSD, that these substances could cause psychedelic states of between 36-72 hours depending on the dose taken, and that they take up to 3 hours before any effect began. Kosmicare volunteers said they had cases where people had taken a tab of DOX or NiBOME, and when they had felt no effect after an hour, they had taken another, and even a third one an hour later, just as the first one began to take effect. Although they did not state what tab designs had tested positive for these substances, individuals often added descriptions to the Alert warnings, saying  things like “Asterix and Fractal tabs”. Personally, these warnings meant that I was very cautious when consuming any psychedelics, taking them for testing, or seeking out mushrooms rather than LSD.

“volunteers provided valuable harm reduction activities, which went a long way towards helping people make safer choices when it came to consuming substances.”


Boom 2014 was a fantastic festival. The energy throughout the week was truly uplifting and positive, the setting beautiful, with so many things available to participate in or see, that it is impossible to describe them all here. Without doubt, the decriminalisation of drugs in Portugal contributed to the relaxed atmosphere. There was none of the usual police activity targeting drug users which goes on at similar festivals in other countries, and without any doubt the activities of the Kosmicare and CheckIn volunteers provided valuable harm reduction activities, which went a long way towards helping people make safer choices when it came to consuming substances.

It’s a sad reflection on the state of European drug policy that in most other EU countries testing services like CheckIn would, sadly, be considered illegal, and in some cases, [for example in the UK], where they have been attempted, have resulted in the event being shut down.

Written by Adam Wallace

Posted in Europe, Europe, Events, Law reform, peer insights | Tagged , , , , , , , , , | Leave a comment

New Jersey continues the USA trend of hyper-regulation and persecution of pregnant women who use/d drugs

An almost unbelievable trend towards the criminalisation, persecution, over-regulation and management  of pregnant women who use drugs, is taking place across the US. Tomorrow marks a particularly disturbing day as we watch court proceedings in the state of New Jersey unfold in what could be a massively dangerous and regressive step in the provision of caring for opiate dependent pregnant women.

Another Nail in the Coffin in the Rights of Pregnant Women

Tomorrow may see yet one more nail in the coffin of the reproductive rights of pregnant women who use drugs; persecuted, marginalised and criminalised, the USA has become a battle ground for pregnant women where the rights of the fetus is effectively trumping the rights of the pregnant mother. Women, who, for a single positive drug test can end up not just losing custody of their children, but are then reported without their consent to child welfare and criminal justice services.

Pregnant women and those who give birth, have been  arrested, bound up in massively dis-empowering and complex child abuse policies and procedures that they may struggle to fight for years, and finally incarcerated as state after state chooses the rights over the fetus as being more important than the rights of a mother; or more accurately, the rights of low-income, pregnant women of colour. It is a shameful disgrace and a violation of the rights of women on so many levels, it would take the whole article just to list them. Yet US states keep on turning the screws, tighter and tighter.

Methadone for Mothers Maybe Banned

Tomorrow, we will see if it becomes illegal for a pregnant woman to receive legal methadone treatment (OST) whilst she is pregnant. Despite the views of every medical authority the world over who cite the importance of pregnant women who are dependent on opiates, to be transferred to Opiate Substitution Therapy, or methadone maintenance treatment at a stable dose, keeping mother and baby comfortable and out of harms way, at least until the child is born. NAPW, The National Advocates for Pregnant Women, are the extraordinary advocacy group that supports, researches, lobbies, and legally challenges these gross violations of women’s rights.

Below is their article taken from their website NAPW  and I urge you to take a look at their website for thorough information about this disturbing trend spreading across the US, and opportunities to take part in supporting their actions to assist and represent women affected by these horrific laws and policies.

I also urge you to watch the court proceedings live  on New Jersey’s Supreme Court Webcast, and gain a greater understanding of the issues facing American women who use, occasionally used, once used, legally or illegally used  – drugs, whilst pregnant. Note: look out for a blog here this month based on the situation in the USA and how INPUD and its women’s forum INWUD, and the Women and Harm Reduction International Network together with NAPW and others make a submission to the Human Rights Council about the conduct of The United States and its role in violating a woman’s right to bodily autonomy, to family life, to privacy, to due process of law and her ability to be an equal citizen under federal and international law.

Shame on You New Jersey! Shame on the USA! ACT NOW! These type of laws could be coming to a country /state near you.

 

Will the New Jersey Supreme Court Treat Pregnant Women Separately and Unequally?

Oil painting by Katherine Fraser , click picture for link to her website for more beautiful artwork

Oil painting by Katherine Fraser , click picture for link to her website for more beautiful artwork

Tomorrow, Tuesday September 9, 2014 at 1:00 pm EST, the New Jersey Supreme Court will hear oral argument in New Jersey Department of Youth and Family Services vs. Y.N that will determine whether New Jersey will become the only state in the U.S. to effectively ban pregnant women from receiving methadone treatment.

At the center of the case is a woman, identified by the court as Y.N., who had been struggling with a dependency on a prescribed opioid painkiller. When she found out she was pregnant, she followed medical advice and obtained methadone treatment. She gave birth to a healthy baby who was successfully treated for symptoms of neonatal abstinence syndrome (NAS). NAS is a side effect of methadone treatment and other medications, such as those commonly prescribed to treat depression. Y.N. was reported to the Division of Youth and Family Services (DYFS) and was judged to have abused her child.

The fact that Y.N. was following a medically approved and prescribed course of methadone treatment was deemed to be irrelevant.

According to DYFS and the lower court, that the newborn experienced symptoms of NAS — which they define as “harm” — was all that matters. The fact that Y.N. was following a medically approved and prescribed course of methadone treatment was deemed to be irrelevant.

NAPW with Lawrence S. Lustberg of Gibbons P.C., represents 76 organizations and experts in maternal, fetal, and child health, addiction treatment, and health advocacy as amici curiae (friends of the court) before the New Jersey Supreme Court. As the brief points out, DYFS’s position and the lower court’s decision fly in the face not only of the recommendations of the World Health Organization and the U.S. government, but of New Jersey’s own policy. DYFS, the very same agency that targeted Y.N., collaborates with the New Jersey Department of Mental Health and Addiction Services to provide and prioritize methadone treatment for pregnant women and parents involved in the child welfare system.

Tomorrow, September 9, 2014, Mr. Lustberg will urge the court to ensure that pregnant women, no less than others, have a right to seek and obtain medical care and to have decisions about them based on science, not stigma.

Oral arguments are open to the public, but if you are unable to make it to Trenton, NJ please join our Director of Legal Advocacy, Sara Ainsworth, in viewing the live webcast. It will be accessible via the New Jersey Supreme Court’s webcast site. We will be tweeting on the hashtag #ScienceNotStigma to answer your questions about the proceedings.

Pregnant women, whether threatened with punishment through civil child welfare actions in New Jersey or arrest in Tennessee (see “The right’s favorite new quack: Terri Lynn Weaver’s dangerous baby ‘science'”), need NAPW’s support and zealous advocacy.

Posted in Campaigns, Human Rights Violations, INPUD, INWUD, law enforcement, methadone, Women | Tagged , , , , , , | Leave a comment

Before International Overdose Day there was…..

Before International overdose day on the 31st August there was, of course, International Remembrance Day on 21st July. This is a peer led day where we can remember, celebrate, and pay tribute to our friends and loved ones. Have a look at the page ‘calendar of events’ to see more about IRD and maybe you can remember your mates in a befitting way next year. This video is by the Drug User Organisation, Plataforma Drogológica in Spain (Catalan) which is actually one umbrella organisation for a whole range of drug user orgs. As such this  Remembrance day was made in association with a a large group of associated Spanish drug organisations in a really great collaboration. It is a simple collage of photos in a beautiful Spanish town square area and has a brilliant and rare Lou Reed soundtrack (guess which one?!), which is of course, especially pertinent as our dear Lou died this year of liver cancer…

As the music picks up tempo, you can see people delivering powerful speeches to the crowds, (the audience looks captivated).  You can see displays of many of the global posters created by users around the world for International Remembrance Day, and loads of information is being given out to the crowd. It really looks like they had a lovely day  and engaged the community in a really warm and friendly way. But this is a very serious day as well, and you cannot forget that as they show a big poster sized piece of paper that has dozens and dozens of names written on it, all those who have died in the battle, in the war on drug users.  Then, small white paper bags were put out on the ground, each one with a persons name on it, signifying the place they once had in the world, now gone  – but not forgotten. A great tribute and lovely video. Simple but really meaningful. A great example of how you can put together your own video for a special event like this, when keeping it uncomplicated can really work. Nice one guys.

Click here  for Plataforma Drogológica’s  excellent blog (in Spanish but is easily translatable via Google chrome)

V Memorial Internacional 21 julio 2014 Barcelona Catalunya Plataforma Drogológica

The associations that comprise the Platform Drogològica are:

  • AGRUPA’T (Group of people around the toxic addictions), Lleida.
  • Arsu (Reus Us Useful Association), Tarragona.
  • ASUT (we Useful Association), Barcelona.
  • APDO (Association opioid dependent patients).
  • GRDB (Group Harm Reduction Barcelona).
  • Freckled (Point of Information on Drug Addiction Help Group), L’Hospitalet.
Posted in Europe, Events, Injection Drug Use, Latin European Countries, peer insights, peer involvement, peer support, Regional Information, videos | Tagged , , , , | Leave a comment

31st August: World Overdose Day

When you are using drugs intravenously, overdosing is a real reality. Drug user unions all over the world are constantly pumping out overdose prevention materials, workshops, etc. But more recently, some more fortunate country policies have led to NALOXONE being handed out to every user at risk. Naloxone is the stuff that the paramedics inject you with that brings you around from an opiate overdose often in less than 30 seconds. Except, even though in some countries countless lives have been saved by by passing the wait for the ambulance and just giving it direct to users to use on each other should something go wrong, there are still too many dying of what is now so often preventable. Sadly, they haven’t got Naloxone in Nepal yet as this writer and INPUD member tells us. But thank god he was able to get some lifesaving advice, on this real overdose day.
Written by NK, Nepal.
The purple ribbon worn on 31st Auug, International Overdose Day

The purple ribbon worn on 31st Aug, International Overdose Day

It was the 30th August 2014, one day before the world overdose awareness day and I saw another overdose.

We three friends gathered in as usual place and decided to inject NORPHINE (injectable Buprenorphine) DIAZEPAM, AVIL* (pheniramine maleate), STAGUN , PHENERGAN** -(Promethazine)
So we got what we wanted and the whole plan was arranged by me. Recently i am on methadone treatment.  I love to inject all these drug formulas to get high, but on the 30th August in the afternoon i was a bit confused about injecting NORPHINE, even though this whole plan was organised by me.
So I decided to exclude NORPHINE from the above drug combination as some one told me not to inject NORPHINE. So I told my friends just to fill the syringe with all other drugs but to exclude NORPHINE for me and one of my friends.
Among three of us, two of us are on OST program (methadone), and we both decided to do the same formula but in some corner in my mind i was confused, so i tried to phone many people to take some advice.
Mr Anjay (an INPUD member and activist) was one person who suggested to us clearly not to inject.
As I love to inject all these formulas,I first phoned him once to confirm that how much (mls) should I inject for my safety and as he knows that I am on methadone treatment, so he clearly told me not to use all these drugs together for my safety.
A second  call was made by him to tell me about why i should not use all these drugs together while I am on methadone.  And the third phone call was made by him to know whether I had made a bad choice of injecting or not and I choose not to inject but one of  my friends did choose to inject and he is now in hospital. (On third phone call I was out getting a taxi for an emergency ride to hospital).
I am sitting now outside the hospital and thinking why we don’t have access to NALOXONE in Nepal? If Naloxone works to prevent overdose then it should be in Nepal.
INPUD's Naloxone Campaign

INPUD’s Naloxone Campaign

It was thanks to Mr Anjay that my mother didn’t cry and my relatives didn’t visit
hospital saying different discriminating words.  I am sitting now outside the hospital and thinking why we don’t have access to NALOXONE in Nepal. If Naloxone works to prevent overdose then it should be in Nepal.
During the last 5 years I had seen a lot of friends of mine die due to overdose.  Well, I think its not a natural death – because we don’t have access to Naloxone or something which could prevent the future people who inject drugs from overdose accidents..
Every phone call made to Mr Anjay were on Hands-free so we  three could hear his suggestions on Injecting all the drugs above or not, and the second phone call he made played a vital role and I didn’t inject. So I am alive to write this email. Well, I am seeing my friends mom’s emotions towards her son and even I can feel how his relatives are feeling now.
As his mother cant see this message, i really want to say Sorry to his mom and him for arranging all this  and I am praying to God he will recover him soon,even it was his choice to inject.
When an overdose accident happens, we all face the same root causes of OVERDOSE and I know that this advice on 30th Aug given to me by Anjay will work while I am on methadone but when I am done with methadone the best way to prevent OVERDOSE is Naloxone.
Please Anjay, don’t think this is a lavish praise to Mr Anjay KC, this is an illustrative example which could happen to anyone but there wont always be people like Anjay brother and I am lucky that on 30th august 2014, he was there to help me to prevent possible  death or  a hospital bed.
And most of the people who use drugs in Nepal do hango and pango with all the possible risks, and this is happening. (The street name in Nepal for all above drugs in combination are HANGO and PANGO). Well, we are drug users and no one has been shocked to know that I am taking my choice of substances or injecting all above things sometimes or once in a week. And I am not afraid tell the fact, and it’s not  that everyone listened or will listen to Anjay brother or to others who knows its high risk behavior, but with easy access to Naloxone it is a better idea to prevent more overdose accidents in near future.
Thanks for a sobering message NK, on International Overdose Day 31st Aug. 
Your favourite ‘liked’ guest blog gets a cash prize every 3 months so dont forget to ‘like’ . 
* Avil (pheniramine maleate) may cause drowsiness and may increase the effects of alcohol and other sedative drugs. If affected, do not drive a motor vehicle or operate machinery. You might get used to the sedative effect after a few days of treatment, however you may prefer to change to a non-sedating antihistamine.
** Phenergan (promethazine) belongs to a group of drugs called phenothiazines. It works by changing the actions of chemicals in your brain. Promethazine also acts as an antihistamine. It blocks the effects of the naturally occurring chemical histamine in your body. Phenergan also prevents motion sickness, and treats nausea and vomiting or pain after surgery. It is also used as a sedative or sleep aid.
Posted in Campaigns, methadone, peer education, peer insights, peer support, Publications and Tools | Tagged , , , , | Leave a comment

Life Goes On in Russia’s Crimea

Here are the final 2 blogs in the series of 4, from Igor Kuzmenko’s personal blogs of Crimea, in particular, life for those who once lived under Ukraine law and received Opiate Substitution Treatment (OST) such as methadone only to lose their new found stability after the region’s Referendum when the majority voted to go back to Russian governance. This effectively closed the doors for good on OST leaving over 800 people in shock and despair. So what is a person withdrawing from treatment supposed to do? What would you do if your access to methadone or buprenorphine was cut off almost overnight…? Igor gives us a frighteningly honest account of what happened to the OST community in Crimea..Here is part 3 and part 4.

 

RIP Crimean OST Program, 2006

Igor Kuzmenko

Igor Kuzmenko

Part 3

Meanwhile life in the Crimea went on. As spring approached, people continued to go to work, and students proceeded to attend their studies. Very few inhabitants of the Crimea understood that 806 people of the region’s  population, were literally on the way out.

 

Death From Abstinence

As I  wrote previously, the first patient in Simferopol died around the beginning of April. He was about 50, was seriously ill and couldn’t move at all. Everything was good with him before the March events; the doctor wrote a prescription for him so he could get liquid methadone and he continued to use Opiate Substitution Therapy without leaving the apartment. But after March 16, everything changed and the prescription form of OST was suspended in Crimea. It goes without saying that any coroner wouldn’t determine a cause of death as ‘death from abstinency’. But something tells me that if he continued to have the opportunity to receive methadone, he would be still alive.

 But after March 16, everything changed and the prescription form of OST was suspended in Crimea.

Bupe Not Methadone

Actually,  there were not so many people receiving OST on a prescription basis in the Crimea. And there were a few reasons for that. First,  the prescription form is possible only for those people who receive buprenorphine in Ukraine. There are cities where all clients of the buprenorphine program constantly receive it using a prescription. But everything is much more difficult when dealing with methadone.

ukrainian methadone Methadose and Metadol

Ukrainian methadone:
Metadict and Metadole -dispensed in the form of tablets , but rarely syrup

The medicine used in a Ukrainian methadone OST program – known as ‘Metadict’ and ‘Metadole’ – are both made in Germany or Canada. Both of them are in the form of tablets, not syrup. They come in blister packs of 10 tablets: 25 mg each, (total 250mg)  or in bottles of 500 mg. But it is impossible to get it using a prescription because according to the laws of Ukraine a single prescription dose of any narcotic substance mustn’t exceed 112 mg. The blister packs are not allowed to be cut up or tablets prescribed separately from the packaging. There were individual cases when patients could receive a liquid methadone on prescription, but only on a commercial basis and it is very expensive.

 

Methadone Not Bupe

In the Crimea, it is different. Slightly more than 50 people out of 806 patients received buprenorphine, the others got methadone. About 10 people out of those 50 had the opportunity to receive buprenorphine on prescription though not on a constant basis. They got it occasionally – because of a business trip, illness or going on a holiday.

Ukrainian Metadol

Ukrainian methadone; Metadol

There is also one more reason for prescriptions being shut down in the Crimea after “the referendum”. Doctors were afraid to write out prescriptions on both of these substances because they are actually illegal in Russia and so employees of drugstores in turn, were afraid to sell the medications and fill  these prescriptions.

 

May 20th – D Day

May 20 was the last day when people could use the OST program in the Crimea, so after that each of the 806 person’s who were prescribed had to make one’s own choices of what to do. There were only four options:

  1. String oneself up to stop using drugs forever
  2. Go to Russian local rehabilitation centers praised by numerous Russian “guests”;
  3. Continue using OST by moving to Ukraine;
  4. Go back to using “street” drugs.

According to my knowledge, no more than 20-30 people went to Russia for rehab. Many of them couldn’t undergo an entire “rehabilitation course” till the end and ran away. However, some stayed in rehab for the whole term. One OST client from Simferopol died in St. Petersburg during the rehabilitation process. He died of an overdose.

Slightly less than 60 people risked going to Ukraine. This option was, undoubtedly, the most realistic of all. For example, in many cases it was necessary to buy tickets at ones’ own expense to go to Russia, but in Ukraine both tickets, accommodation and food were paid for you.

 

Should I Stay or Should I Go?

Nevertheless, as you can see by the number of people who went to Ukraine, it didn’t become a mass phenomenon. Partly, this was due to mass media propaganda which colourfully described the various ‘atrocities’ of Ukrainians in relation to the inhabitants of the Crimea who risked leaving and facing the ‘mockeries’ of the Ukrainian border guards who were taking away passports on the border and other nonsense. The other reason that many of inhabitants of the Crimea never left for Ukraine, was they had neither friends, nor relatives there and simply couldn’t imagine where they were supposed to go.

Now many of the clients of OST who had gone to Ukraine, already found a job there, and all without exception found rented accommodation and received some financial support from the project MBF “Renaissance”.

 

“It turns out that more than 600 people started taking street drugs again.”

 

From those people with whom I was in contact no more than 10 people could finally stop taking drugs of any kind.

If you make simple arithmetic operation, it turns out the following:

806 (total number of clients in the Crimea OST program) minus 20 (number of those who undergone “rehabilitation” in Russia), minus 60 (left to Ukraine), minus 50 (suppose not 10, but 50 people stopped taking drugs) = 676.

About 30 already died out of that number of people. It turns out that more than 600 people started taking street drugs again. And many of them during many years of using the OST program found work, started a family and gave birth to children.  Now it’s all over.

 Igor Kuzmenko

Below is the final part of Igor Kuzmenko’s series on Crimea. Please feel free to add your thoughts and comments and let us know if you have a story to tell from your country.

 RIP Crimean OST Program, 2006

Igor Kuzmenko

Igor Kuzmenko

Part 4

How to reach those people who made decisions on the issues of Opiate Substitution Therapy (OST)  in the Crimea? Which words should be found to explain to them that situation where 800 drug users under constant medical and psychological control, employed and reintegrated, is much better than 800 people coming back to being criminalised in the drug trade? How could one explain what the blue sky is to the person born blind? How it is possible to explain to a mother, whose son quietly had been using OST for several years, stopped breaking the law, started a family and found a job, why he has died of an overdose during the rehabilitation? Who benefits from it?

“What we had been created for several years was destroyed in two and a half months.”

Probably, for those people who have nothing to do with OST and don’t have the slightest idea of what this therapy actually is, it is only a “change of the dealer” – earlier I bought drugs on the street and now I get them free of charge from the doctor. But actually OST is a difficult system in which the process of taking methadone or buprenorphine is only a small part of the whole process. OST is a complex of actions that allow the person to live a more or less productive life. Many elements of this scheme, such as the ART (Anti Retroviral Therapy*), anti-tubercular therapy, are strongly connected with OST. There is no point in pretending otherwise, many people started to use ART and to look after their health only after they visited the OST site.

Irina,one of the 806 OST patients to lose their prescriptions

Irina,one of the 806 OST clients in Crimea to lose their prescriptions

Stability and the Street

What we had been created for several years was destroyed in two and a half months.

So, more than 600 former people from the OST programs have taken part in the illicit drug scene again since May. What do our people use to medicate themselves with now?

Lyrica. This beautiful and romantic word is actually the name for one of the biggest problems of the Crimean drug scene nowadays. Lyrica (active agent – Pregabalin). An antiepileptic and anticonvulsive medical product made by Pfizer Company. Many ex-OST patients are suffering from its over-use today. It has excellent medical qualities if you take it on prescription, but it causes terrible side effects and dependence for those people who try to combat withdrawal syndrome with its help. It is sold freely in any drugstore in the Crimea and costs not so much.

Only a total deficiency of any medical products in local drugstores is saving others from the serious consequences of pharmaceutical drug dependence in the Crimea.

“Now I hear from people who were full of vim and vigor, who had plans for the future just two months ago, that they want to die.”

Checks. “Checks” is how people name portions of raw opium from which it is possible to extract heroin, if you add acetic anhydride to it.

“Checks” existed in the Crimea as far back as I can remember. It is a good reliable way to quickly recover from withdrawal syndrome. You could get “checks” quite easily at any time. But after the OST programs were closed, hundreds of drug users suddenly entered the market (more than 200 people just in Simferopol! ) and devastated all the opium reserves in the Crimea. Moreover, new anti-narcotic structures represented by the Russian police (all police officers came to the Crimea from the Russian cities – Perm, Kazan, Moscow, there are not any local representatives in police) and by Federal Service on Control of the Drug trafficking (FDCS) – the nightmare of the Russian drug users. The increase in number of “checks” users led to a decrease in its supply and importing from Ukraine became a big problem.

By hearsay, so as not to suddenly miss an opportunity to increase profits, dealers began to add foreign substances to their product, it could be harmless substances or hard shit like home-made methadone. New police forces and new circumstances around buying drugs has led to the situation where purchasing “checks” poses a big problem now.

Heroin. I often hear from people in the Crimea that there is lot of cheap heroin here now. But I couldn’t find even one person who saw or tried that heroin. So I can draw a conclusion that there is not and there was not any heroin in the Crimea.

Krokodil. I assure you that if it wasn’t for a deficiency of medical products in drugstores, including codeine-containing ones, “krokodil” would now be problem No. 1 in the Crimea. But every cloud has a silver lining.  People just can’t find the substance that you should use to make this poison, and that’s why krokodil isn’t present in the Crimean drug scene.

“Well, this is how it goes.”

Well, this is how it goes.

Now I hear from people who were full of vim and vigor, who had plans for the future just two months ago that they want to die. Former patients aren’t able to go to work because they suffer from never-ending withdrawal syndrome. Their families suffer as much as they do.

I am an optimist.  My glass is always half full. But I can’t see anything optimistic in the future of those from the last OST programme in Crimea.

Well, who knows, maybe I’m mistaken.

Written by Igor Kuzmenko

*ART: Anti Retroviral Therapy is a medical treatment for HIV/AIDS

 

All 4 parts in the Crimean OST series has been written by Igor Kuzmenko and here’s a massive public thank you to him for his really honest and personal insights into what it has been like for our peers in the region, and answering many of our questions too, I’m sure. The blogs were translated from Russian into English by the very professional Daria Mighty, and we are indebted to her speed and accuracy, thank you Daria! (The Russian version is available at ENPUD)
If you want to find out more about the drug using community and its issues in the region of Eurasia, or you are living in that part of the world, check out INPUD’s sister organisation on their website ENPUD (The Eurasian Network of People who Use Drugs). You can become a member, read other blogs from Igor and others and find out the news and views on drug issues and politics.

Please write to us at blog@inpud.net if you have a drug related story from your country.

Posted in Eastern European Countries, Europe, law enforcement, Law reform, methadone, peer insights, Regional Information, Regional News & Info | Tagged , , , , , , | 2 Comments

Last Calls on Methadone…Russia’s in Charge

The recent events in Ukraine were watched by us all over the world. A president is deposed, and civil unrest spreads throughout the region. The Ukraine loses control of its western front in Crimea and by way of a rushed referendum supported by the people, has to hand the region back to Russia.  Military personal appear in the streets and laws change overnight. But what happens to the drug users? At INPUD, our members know very well that while the Ukraine recently started giving methadone and buprenorphine (mainly buprenorphine) to its users, Russia on the other hand, deems both drugs illegal and will not entertain OST (Opiate Substitution Therapy) for any reasons whatsoever. So, for the Crimean drug users who had once been lining up outside the methadone clinic, what was going to happen? Igor Kuzmenko was there and has written a series of blogs for us to give readers an insight into life after The Russian Referendum.  

Catch part 1 & 2 below, and for part 3 & 4, click here

Note: Igor Kuzmenko is an active member of INPUD’s sister organisation ENPUD, the Eurasian Network of People who Use Drugs / Click the link to find out about what is going on in the region (pages are translatable with Chrome) and if interested, if you can fill in their membership form.

RI.P. Crimean OST program, 2006 - 

By Igor Kuzmenko

Part 1 (of 4)   It just so happened that when that a life changing referendum was being held in March in the Crimea this year, the one which asked all Crimean citizens about whether our region should stay with the current government of Ukraine or return again to Russia, I was participating in the annual commission of Narcotic Drugs in Vienna.  This meant  I could only receive news from the Crimea via Skype or by phone. And the news was bad. For my own work as a social worker dispensing Opiate Substitution Treatment (OST),  it really was bad news; a sharp decrease in dosages was followed by panic among the patients and  low spirits of the medical personnel on the OST site. And then there was the strange armed people and large numbers of ‘unknown’ military equipment now appearing in the Crimea…

igorVienna1_ed

Igor Kuzmenko outside the Commission for Narcotic Drugs In Vienna this year. He would return to quite a different Crimea…

Almost nothing has changed in the Crimea on the surface. Except that instead of usual Ukrainian flags there are now Russian ones, and instead of traffic cops there are notorious “green little men” at the junctions. And at night you can sometimes hear the roar of military machines crossing the city.

“If, at the beginning buprenorphine was reduced by 2 mg a week, at the end of April and in May it was being reduced by 2 mg every other day. It was a very painful process.”

The OST site changed externally even less – the same people, the same fuss. But it was only externally. The fear started to grow. The doctors and nurses were afraid because legally, if the Crimea belongs to Russia and obeys Russian laws and they continue with methadone distribution on the site, they could be arrested for “distribution of drugs in especially large amounts performed in collusion by a group of people”. And you should agree, that’s no laughing matter.

OST clients were terrified because changes to prescriptions are always frightening. Their families were terrified too, because years of quiet living came to an end after the termination of OST.

Dosages decreased more and more. If, at the beginning buprenorphine was reduced by 2 mg a week, at the end of April and in May it was being reduced by 2 mg every other day. It was a very painful process. Of course, many patients tried to compensate for a lack drugs by using a large amount of barbiturates and those who could, also used street drugs. Thus the condition of patients constantly worsened: barbiturates helped to numb unpleasant feelings a little but not the pain, which was enfeebling you at the same time. I still remember people wandering about the site yard like ghosts, patients who had grown old in just a few days.

OST Patients walking away having consumed their last dose of methadone...

OST Patients walking away having consumed their last dose of methadone…


How OST Died

I want everyone to have a clear idea of how exactly OST died in the Crimea. There weren’t any documents issued by local authorities or from the Ukrainian or Russian side which could forbid, limit or in any other way have an effect on the situation with substitution therapy on the Crimean sites.

The reasons for the decrease in dosages were a limited quantity of pharmaceuticals in the Crimean warehouses and an impossibility to import methadone and buprenorphine from Ukraine to the Crimea.

It was difficult to import enough methadone and buprenorphine for a month into the Crimea even before the referendum because there wasn’t calm in Ukraine due to the Maiden* and, after March 16, all these difficulties were multiplied by the issues of state affiliation. We just weren’t allowed to import a new consignment of medicine. OST wasn’t banned in the Crimea, it was strangled.

“OST wasn’t banned in the Crimea, it was strangled”

OST wasn’t banned in the Crimea, it was strangled. Whose fault is this? It is difficult to tell. It seems to me that happiness of the patients wasn’t important for both sides. A patient on pills is a medical issue, and a suffering patient is political issue. We live in politically charged times and in my opinion, a political outcome was favorable to both parties: beneficial for Russia because methadone is not legal there, and Ukraine got its’ chance to once again confirm the inhumane actions of Russia.

In Simferopol there were rumours of drug users being severely beaten by ‘groups of sporty looking people’. However, Igor says; “There was the death of a patient in Simferopol that was for real during that period. He just didn’t have any energy left to live with a daily decreasing dose…”

In the meantime there were a lot of rumors spreading around. Rumors of absolutely fanatical methods of counter-drug operations by FDCS,  (The Federal Drug Control Service of the Russian Federation) such as shooting out the wheels of suspected cars. Rumors about groups of young sporty looking people who had recently appeared in Simferopol to attack drug addicts and beat them almost to death in places where it is possible to buy drugs. Rumors about  a shipload of heroin delivered to the Crimea from Russia. But there wasn’t any real confirmation of these rumors either.

But there was the death of a patient in Simferopol that was for real during that period. He just didn’t have any energy left to live with daily decreasing dose…. The fear of the future was for real too. And at the same time, there were high hopes. At that time very few people believed that OST, which everyone had gotten used to and without which nobody could imagine one’s life, would be banned and services closed all of the sudden.

The hope helps us to live.

Igor Kuzmenko

* Maiden: The name of the city Square in Kiev. It has been the site of many important protests including The Orange Revolution but for many months in 2014 it became the place where Euro-centric activists protested, camping out and fighting back against authorities. After bloody battles, people power reigned and the Ukrainian president fled into Russia. The protest gained the name The EuroMaiden Revolution.

RI.P. Crimean OST program, 2006

Part 2         Igor Kuzmenko

Around April, during the period of intensive decreases in methadone and buprenorphine doses, one of the patients approached me in the OST site in Simferopol. He was an adult man, slightly over 50 years old. He had multiple diagnoses, including  active form of tuberculosis (before the referendum he was admitted to the tuberculosis dispensary where he could get methadone, but after the referendum this opportunity didn’t exist anymore and he had to go the remaining OST site to get his methadone among healthy patients). He also suffered from Hepatitis C and HIV. He is an artist and looks like a true artist – he wears a raincoat and a long scarf. It was notable that he was extremely worried. Nervously taking a puff, he said:

“Igor, if sometimes you need my help, you can count on me. I have only one wish right now – to douse myself in gasoline and set myself on fire. If only it could do any good!”

Many of us didn’t want to sit back and do nothing. We organized a group. We didn’t set a task to change the political reality, obviously we were unable to do it, and we simply wanted to draw as much attention as possible to the stopping of the importation of OST medicine to the Crimea. So three of us paid a visit to the Ministry of Health of Ukraine, in Kiev.

The Opiate Substituion Programme In Simferopol closes its doors for the forseeable future...

The Opiate Substitution Programme In Simferopol closes its doors for the forseeable future…

Besides us, inhabitants of the Crimea, there was a large number of local activists and representatives of The Alliance Ukraine (an HIV/AIDS organisation) participating in a protest action. Unfortunately, we couldn’t meet the minister, but some officials from the civil service on HIV issues found a little bit of time for us.

“…It became absolutely clear to me that there will be no importation of OST medicines to the Crimea at all.”

I must admit that after this meeting in the Ministry of Health, it became absolutely clear to me that there will be no importation of OST medicines to the Crimea at all. Nobody was interested in that..

No Discontent Allowed

Meanwhile in Simferopol in the Crimea, our people tried to make a protest action near the headquarters of the Crimean government. And there we ran into surprise: all of us had gotten used to our liberal Ukrainian system regarding protest actions and meetings. It was rather simple to inform the city authorities of the time and place of a meeting in Ukraine. But as it became clear, in Russia, (and now in Crimea)  it is impossible for more than two people to gather together to show any discontent. Therefore we had to drop any idea of setting a protest action in the center of Simferopol.

sevestapol1_ed

Almost nothing changed in Crimea on the surface…(pic: Sevestapol)

Parental support is also very effective in context of raising the profile of OST, not least for the reason that parents are not drug-dependent and the stigmatizing that is usual in such cases, doesn’t apply to them. Unfortunately however, we also failed to attract a lot of parents to our movement.

I have to admit that the OST patient community couldn’t find complete consensus either. Some of us considered the proximity of Russia as being a benefit, others rejoiced at the sudden opportunity to quit methadone, and someone didn’t care at all. Some patients even participated in the referendum and the self-defense groups (groups which promoted pro-Russian forces in the Crimea). Nevertheless the majority of us wanted the same: at the maximum – the resumption of Opiate Substitution Treatment, and at the minimum – importation of a monthly stock of methadone and buprenorphine.

I am very grateful to the medical personnel of OST sites in the Crimea. Not their chiefs but the ordinary physicians and nurses. All of them are courageous people. Just think of it: according to Russian laws every day they went to work to give out methadone to the patients, they were making criminal acts. Acts that can be characterized as “distribution of drugs in especially large amounts performed in collusion by a group of people“. It was a very courageous especially as all of them without exception knew perfectly well how it could turn out for them.

And there were some things and some people to be afraid of. Both the administration and numerous “guests” put unbearable pressure on them. But I will tell you about that and many other things next time…

Stay tuned for part 3 and 4 in Igor Kuzmenko’s personal story of his community after Crimea becomes Russian again…Click here

Posted in Eastern European Countries, law enforcement, methadone, peer insights, Regional Information, UNODC | Tagged , , , , , , , , | 5 Comments

New Publication for Women Injectors

WOMENwhoInject_HIV_specficNeedsPOLICY_BRIEF2014 poppy4Here is a link to an excellent newly released briefing jointly published by INPUD, UNODC’s HIV team, and UN Women looking at the particular challenges facing women who use drugs, and making concrete recommendations for service providers on the realisation of gender equality and human rights in harm reduction programming. Written by WHRIN founder and INPUD /INWUD member Ruth Birgin

Excerpt: To date, inadequate attention has been given to rectifying gender inequalities in harm reduction programming. Strategies and policies are urgently needed to address this gap as a first step towards improving the safety, health and well-being of women who inject drugs. Additional approaches should also be developed and implemented to provide comprehensive health, social and legal services that reach them and their sexual and drug-using partners. To be effective, such approaches should be based on evidence and human rights standards.

These steps are necessary not only for women who inject drugs, but also more broadly for communities and societies. Failure to adequately respond to the needs of this invisible and highly vulnerable population has harmful consequences for the health of the individuals themselves as well as for public health overall.

 The document is called:

Women who Inject Drugs and HIV; Addressing Specific Needs

WOMENwhoInject_HIV_specficNeedsPOLICY_BRIEF2014

 

Posted in HIV/AIDS, INPUD, INWUD, peer insights, Women | Leave a comment

Voices From The Global Movement Of People Who Use Drugs

For anybody there who has wondered just what drug user activism is….watch this

For any parent who thinks because their child uses drugs or is on a treatment prescription, that their life is effectively over…watch this

For any drug user who believes they are worth it, that their community is unique, and that their friends are worth saving, watch this – and if you dont -then you must watch this.

For all those people who never thought drug users could or would amount to anything – you owe us to watch this.

Have a look at some of the people, in some of the places around the world who have come together to talk about drug user activism, their incredible achievements, the massive obstacles they constantly tackle, bravely, beautifully and often with very little but their deeply felt belief that by saving each other, we are saving ourselves from the damage the war on drugs inflicts on our communities every day.

Australia’s National Drug User Organisation AIVL, (do NOT miss their excellent website) who are a truly supreme example of some world class user activism come good, have put together this really brilliant film, its only 14minutes long, not much time out of your life to see some positive images of people who use drugs; there are many more like this out there, if we would only choose to look again, not judge, not stereotype, not lap up the media cliches, but take a different approach and stop to see just what these amazingly dedicated people are doing for their communities.

Published on 29 Jul 2014; The Film ‘We Are Drug Users – Voices From The Global Movement Of People Who use Drugs’ was launched at “Through the Eye of the Needle – A Celebration of Drug User Activism” event at the 2014 International AIDS Conference in Melbourne.

NOTE: After over two decades of extremely hard work and excellent peer education and community involvement, AIVL and affiliated user organisations around Australia have overseen one of the lowest rates of HIV infection among the injecting community in the world, and have been a model of best practice throughout this time. Yet the current Australian Prime Minister Tony Abbott, a fundementalist christian no less, is actively working against this incredible network wanting to dismantle over 2 decades of seemingly insurmountable progress and innovation in the field of community, government and global user activism. SHAME ON YOU TONY ABBOTT, SHAME ON YOU!

INPUD stands beside AIVL in solidarity and against bigotry, ignorance, and small minded politicians all over the world and we wish them every success in their fight to survive the conservative christian tide currently swamping Australia.

Film Title: We Are Drug Users – Voices From The Global Movement Of People Who use Drugs’

Subscribe to AIVLS own TV Station, click this link

Posted in conference, Decriminalisation, HIV/AIDS, Human Rights Violations, peer education, peer insights, peer involvement, peer support | Leave a comment

Activists Hold a ‘Die In’ to Protest Hep C Drug Prices

Activists Hold Die-In to Protest High Price of Gilead’s Hepatitis C Drug

“HCV drugs are priced out of reach and out of control.”
—Michel Sidibé, UNAIDS

Photo by Alissa Sadler

Activists held placards and brought Greg Alton, the Executive Vice-President of Corporate and Medical Affairs of global pharmaceutical company Gilead, a cows liver on a platter, decrying the impossible pricing of the new HCV drug £1000 per pill, Solvaldi (sofosbuvir).

MELBOURNE, AUSTRALIA, July 24, 2014 – Treatment activists at the 20th International AIDS Conference held a die-in to protest the exorbitant pricing of Sovaldi (sofosbuvir), Gilead’s new hepatitis C virus (HCV) drug.

As Gregg Alton, Gilead’s Executive Vice President of Corporate and Medical Affairs, spoke, activists brought him a liver on a silver platter while chanting “Pills Cost Money, Greed Costs Lives,” “Shame, Shame, Shame,” and “Pharma Greed Kills.” Their signs said, “Wanted: Crimes Against Access,” “Hep C Criminal,” and “Gilead Kills” as the O’Jay’s “For the Love of Money” blared in the background.

Worldwide, at least 150 million people have chronic HCV. Although curable, it kills 500,000 people each year. Hepatitis C is prevalent among people who inject drugs, and widespread in low- and middle-income countries (LMICs).

A few months of treatment with new oral drugs (including Sovaldi) can cure HCV. But Gilead charges US$84,000–168,000 for Sovaldi in the United States; prices across Europe are similar. Sovaldi is unavailable and unaffordable in LMICs, and access in high-income countries is limited.

Sovaldi must be used with other hepatitis C drugs, making treatment even more expensive. But these HCV drugs can be mass-produced generically for just a few hundred dollars for an entire course of treatment, according to researchers from the University of Liverpool.[1]

Alton defends Sovaldi’s price, claiming that treatment with Sovaldi is cheaper than a liver transplant. But most people with hepatitis C virus have not even been diagnosed, and have no hope for a transplant.

“Extortionate pricing will kill people, no matter what the illness —HIV, hepatitis, or cancer,” said Edo Agustian, an Indonesian activist coinfected with HIV and HCV.

Contact (in Melbourne):
Karyn Kaplan, Treatment Action Group (TAG)
E-mail: karyn.kaplan@treatmentactiongroup.org/Mobile: +1.646.316.8979

Niklas Luhmann, Médecins du Monde, France
E-mail: niklas.luhmann@medecinsdumonde.net/Mobile: : +33-7-86975185

Myths and Facts about Gilead’s

Sofosbuvir Pricing

 

MYTH: “The drug has to be priced this high for Gilead to recoup its investment.”

FACT: Gilead has already sold at least US$3 billion of sofosbuvir; sales will soon exceed its investment.

MYTH: “Gilead’s price is ‘cost effective,’ because it is cheaper than a liver transplant.”

FACT: Almost 500,000 people die each year from hepatitis C; most people living with hepatitis C around the world will never even have the hope of a liver transplant. A cure should not be held hostage by high prices. Medicines should be priced so that people who need them can have access—not priced based on a comparison with other interventions.

MYTH: “Gilead has already done so much to increase access to sofosbuvir for the world’s poor—it has dropped the price as low as it can go.”

FACT: Sofosbuvir is priced at US$1,000 per day in the United States. Gilead could make its investment back through volume of sales while making the drug affordable. Health economists estimate that sofosbuvir could be produced generically for less than US$1 per day—a model that includes reasonable profit margin for generic drug makers.

MYTH: “Sofosbuvir will be available everywhere.”

FACT: Gilead is making licensing agreements that limit access and keep prices too high for most of the world.

MYTH: “Governments can pay for sofosbuvir.”

FACT: Even in high-income countries, Gilead’s price is completely unaffordable. Reports show that paying for sofosbuvir will bankrupt health care and education budgets.

 

[1] Hill, A, et al. Minimum target prices for production of treatment and associated diagnostics for hepatitis C in developing countries (Poster LBPE12). International AIDS Conference; 2014 July 20–25; Melbourne, Australia.

 

Posted in Campaigns, conference, Hepatitis C, peer involvement, Publications and Tools | Tagged , , , , , , | 2 Comments