Rising Voices » Maryna Reshetnyak

Russia: Harm Reduction Web-site Blocked by the Government

Maryna Reshetnyak — Mon, 27 Feb 2012 16:09:36 +0000

At the beginning of February Russian Government blocked a web-site rylkov-fond.ru which belongs to the Moscow nonprofit organization Andrey Rylkov Foundation for Promotion of Health Care and Social Justice. The site was filtered on the request of the Federal Drug Control Service (FDCS). The official reason of this action as stated in the FDCS order was “placement of materials which promote (advertise) the drug use, information on distribution, purchase of drugs and stimulate their consumption” Human Rights Watch reported.

Image by Za3tOoOr! CC BY-NC-ND

This was the first case when Russian Government enforced the new domain seizure rules which allow the law enforcement agencies to request domain seizure in the “.ru” and “.рф” domain zone without a court order.

Andrey Rulkov Foundation promotes humanistic attitude towards people living with the drug addiction and urges for the legalization the Opiate Replacement Therapy (ORT) in Russia. The organization provides direct support the drug users, runs needles exchange programs, raises awareness of drug users on health care issues and places them in various medical establishments and rehabilitation centers. The Foundation also played a leading role in the advocacy campaign against detention of Russian harm reduction activist Irina Teplinskaya.

After the blocking of the Andrey Rylkov Foundation web-site many Russian language web-resources and blogs focused on health care and human right republished the open letter of the President of the Foundation Anna Sarang where she explains her view on why the web-site was closed.

Anna wrote that since the end of last year the organization has attracted the attention of various law enforcement agencies, such as police and prosecution. On the February 3^rd the web-site was blocked.

According to Anna’s experience, today in Russia the rights of the drug users are totally ignored. Often medical establishments refuse to provide services to a dying person just because he or she is a drug addict. Even when drug addicts are placed in a hospital most of the time they do not finish a treatment as they cannot endure an abstinent syndrome. This is especially true for TB patients. Substitution therapy would have helped to resolve this issue.

Anna believes that the substitution therapy is a simple and cheap instrument to help people living with a drug addiction. It is used all over the world and is recommended by the World Health Organization. It is used in most of the countries of the former Soviet Union but is fully prohibited in Russia.

In the open letter Anna tried to find the reasons why Russian authorities are so resistant to ORT programs. One of the reasons, according to her, could be the historical approach of treatment of the drug addiction. The patients were treated in labor camps and were given harmful drugs for which the Russian psychiatrists were excluded from international associations. But many of these drugs are still a part of stands of treatment of the drug addiction in Russia. Another reasons noted by Anna is that Methadone is very cheap and would not let corrupted health care officials to made a profit on tender procedures.

Two years ago Anrey Rylkov Foundation drafted the alternative report to the UN Committee on Economic, Social and Cultural Rights in provision of health rights of drug addicted citizens. The Committee highly recommended the Russian Government to introduce the ORT programs for prevention of spread of HIV infection and decriminalization of drug addicts but nothing has changed.

Anna stated that the official Russian statistics on HIV, TB and drug addiction contradicts the UN data and is biased and incorrect. The Foundation’s web-site contained interview and personal stories of people living with the drug addiction and with other health problems. It also contained the scientific papers and WHO recommendations on treatment of the drug addiction as well as the recommendation on protection of human rights. According to Anna, the site had ‘everything but promotion (advertisement) of the drug use, information on distribution, purchase of drugs and stimulating their consumption'.

Anna believes that blocking of her web-site is the begging of a campaign against nonprofit organizations which do not support the government.

Russian and Ukrainian bloggers reacted actively on blocking of Andrey Rylkov Foundation web-site. Blogger Maria Golovanevskaya posted:

Сайт, которому вменяют “пропаганду” был одним из лучших русскоязычных интернет-ресурсов по вопросам лечения и профилактики ВИЧ, туберкулеза и гепатита C. Здесь были собраны научные статьи, комментарии специалистов, рекомендации Всемирной Организации Здравоохранения, в том числе и по вопросам лечения наркозависимости. Проблема заключается в том, что вместо поркотерапии, кодирования, инъекций галоперидола и аминазина, для лечения наркозависимости ВОЗ рекомендует применение заместительной терапии метадоном и бупренорфином–медицинскими препаратами, составляющими основу наркологической помощи страдающим опиойдной наркоманией в большинстве стран мира. Кроме России. У нее свой путь, на котором не то, что применение—обсуждение заместительной терапии жестко табуировано и приравнено к пропаганде наркотических средств.

И вот, Аню ждет повестка в прокуратуру. Сайт заблокирован. ФСКН продолжает беречь здоровье нации.

The web-site which was accused in ‘promotion’ was one of the best Russian language internet resources in treatment and prevention of HIV, TB and Hepatitis C. It contained a collection of scientific papers, comments of experts, World Health Organization recommendations on issues of the drug addiction treatment. The problem is that instead of repressions, coding, injections of haloperidol and aminasin, for treatment of the drug addiction WHO recommends substitution medicines Methadone and Buprinorphine – the medical substances which are a basis of opiate addiction treatment in most of the countries in the world. Besides Russia. It has its own way, where not only use, even a discussion of the substitution therapy is a strong taboo and equals to promotion of drugs.

So, Anna is invited to the prosecution office. The web-site is blocked. FDCS continues to care about the health of the nation.

Ukrainian harm reduction activist and a blogger Pavel Kutsev has a similar opinion. He posted:

оказывается, говорить ПРАВДУ об истинном положении россиян, страдающих наркотической зависимостью – признанной во всем мире (цивилизованной его частью) тяжелейшим хроническим заболеванием, в России также преступно, как и обладать самим статусом хроника «потребитель наркотиков», то есть преступно даже пытаться хоть как-то выживать с этой самой зависимостью! И это не где-нить в долбоёпстане, а в СОВРЕМЕННОЙ России!!!.

Apparently, to tell a TRUTH about the real state of affairs of Russian who suffer from the drug addiction which is consider a serious chronic disease in the civilized part of the world is the same crime as to have a status of chronic ‘drug addict’, so it is a crime even to try to survive with the addiction. And this is not in the middle of nowhere; this is in modern Russia!!!…

Blogger Kostyad gives his own reasons for such a strong resistance of the government to ORT programs. He posted:

Вопрос в популизме. Бороться с наркоманией – очень выгодно. Один человек уже сделал себе карьеру на борьбе с наркоманами. Государство не хочет оставлять поляну одному Ройзману – они тоже борются с за бонусы.

Поэтому и закрывают сайт организации, которая пишет, что нынешняя наркополитика ничего хорошего для страны не принесла, не приносит и не принесет. Реабилитации государственной – кот наплакал, тюремных реабилитационных программ – нет совсем, обучения по вопросам реабилитации – нет совсем, заместительной терапии нет.

This is an issue of populism. To fight with the drug addiction is a good business. One person has already built its carrier on fighting with drugs. The government does not want to give everything just to Roizman (Russian MP, active fighter with drug addiction] - it also wants to benefit from this.

That is why they are blocking the site of the organization which writes that the current drug policy has not brought anything good to the country and will not bring anything in future. There is not enough of government rehab programs, there is not rehab programs for people in prisons, there is no rehab education, no substitution therapy. ..

Ukraine: Blogging as a Kind of Soul Therapy

Maryna Reshetnyak — Sun, 12 Feb 2012 23:35:54 +0000

Ukrainian harm reductions activist and a blogger Victoria Lintsova in an e-mail interview shared with Rising Voice her thoughts and ideas on how blogging helped her and her organization. The most active blogger from the group of activist of Association of the Substitution Treatment Advocates of Ukraine (ASTAU) believes that blogging helps her personality to find a balance and to solve inner conflicts and in the same time it helps her non-profit to achieve results in assisting people living with the drug addiction.

Here is the interview with Victoria.

Q: Could you please tell us a little bit about yourselves:

A: Мне сейчас 36 лет, у меня две дочери, 19 и 4 лет. В целом, считаю, что проживаю вполне активную жизнь, достаточно увлечена своей работой, я работаю в двух общественных организациях, предоставляющих социальные услуги наркозависимым и ВИЧ-позитивным людям, иногда пишу стихи и прозу, люблю домашних животных. Одной из сложностей моей жизни является моя зависимость от наркотиков, употребление которых я начала в 18 лет. Участницей программы ЗПТ я являюсь уже более трех лет, и программа дает мне возможность находится в длительной медикаментозной ремиссии и не употреблять нелегальные наркотики.

A: I am 36, I have two daughters, 19 and 14 year old. In general I believe I have a very active lifestyle. I like my job, I work for two non-profit organizations, which provide social services to drug addicted and HIV positive people. Sometimes I write poems and fiction, I like my pets. One of the challenges of my life is my addiction to drugs, which I started using when I was 18. For more then three years I have been taken part in the Opiate Replacement Therapy (ORT) program and the program gives me an opportunity to be in a long-run medical remission and not to use illegal drugs.

Q: Why did you decided to start the blog, what was the main reason for this?

A: Членом Ассоциации участников ЗПТ Украины я стала около года назад, и написание блогов стало для меня одной из возможностей преодоления внутренних конфликтов и самостигматизации, свойственной наркозависимым людям, кроме того, считаю, что все виды творчества и самовыражения положительно влияют на наше душевное состояние и способствуют личностному развитию.Пожалуй для меня, как для человека, мысли и чувства, выраженные в письменной форме – это один из способов восстановления душевного равновесия, нечто вроде терапии для души. Подтолкнула меня к деятельности блоггера больше внутренняя потребность, но немалым поводом к началу еще послужило предложение членов АSTAU попробовать себя в качестве регионального корреспондента и активиста ЗПТ. Иногда я писала новости нашего региона, связанные с программой ЗПТ, но большинство блогов все же написаны мною, как участницей программы ЗПТ и в них отражены мои личные переживания.

A: About a year ago I became a member of the Association of the Substitution Treatment Advocates of Ukraine (ASTAU) and the blogging gave me an opportunity to overcome internal conflicts and self stigma which is typical for drug addicted people; besides, I believe that all kinds of creative self-realization positively affect our state of mind and promote personal developments. Perhaps, for my personality to put in writing my thoughts and feelings it is a kind of soul therapy, a kind of a tool to keep myself balanced. So, this was my inner need which made me to start the blog, although the offer from ASTAU to become a regional reporter and an ORT activist also played an important role. Sometimes I write news focused on the ORT program but most of my posts are written by me as a participant of the ORT program and reflect my personal feelings.

Q: How blogging can benefit your organization and your work?

A: Пользу для нашей организации от блоггеров я вижу в возможности донесения информации от участников ЗПТ из разных регионов – мы пишем на сайте где и что происходит, проблемы, трудности, успехи, достижения, обмен опытом. Эта информация полезна нам, как участникам программы ЗПТ и членам организации, кроме того, наше творчество на открытом информационном ресурсе доносит до общества наши идеи, которые я считаю важными, и, возможно, может изменить отношение других людей к наркозависимым.

A: As I see, blogging can benefit our organization though sharing the information from various regions – we cover on our web-site what and where is going on, our challenges, successes, and achievements; we share the experience. This information is useful for us as for the ORT program participants and the members of the organization. In addition, our creativity on an open source brings to the public our ideas, which I consider important and, perhaps, could help to change the attitude of other people towards people with drug addiction.

Q: What are your plans for the future and how blogging could help achieve them?

A: Планов на будущее, связанных с ЗПТ у меня немало – я очень поддерживаю идею о том, что участники ЗПТ, как пациенты, должны иметь активную позицию относительно защиты своих прав и добиваться улучшения качества программ ЗПТ, и я готова этим заниматься в своем регионе. В блогах я планирую освещать все новости, связанные с этим. Ну и конечно, когда имею потребность, пишу о личных переживаниях, для меня это важно…

A: I have a lot of plans associated with the ORT, I strongly support the idea that ORT patients should be active in defending their rights and to strive for improvement of the quality of ORT programs and I am ready to work on this in my region. I am planning to cover the news on my blog. And of course when I have a need I write about my personal feelings, this is very important to me.

Ukraine: A Sad Story from The Life of the Substitution Therapy Patient

Maryna Reshetnyak — Mon, 06 Feb 2012 22:26:35 +0000

Recently two Ukrainian bloggers focused on harm reduction issues. Livejournal users depo3p and zpt_users reposted a story of a patient of the opiate replacement therapy (ORT) from the town of Shostka. The patient appeared to be in a serious trouble, and despite that fact the main reason of the problem was his behavior, the other patients did everything they could to help him.

The story was first published by the blogger vovan9619. He posted:

День добрый Всем !!! Хотелось бы поделиться некоторыми новостями,касаемо Сайта ЗПТ и его Участников.. Есть у нас (в Шостке) такой вот Лёша..На программе он вместе с Женой. Имеют маленькую …. Около года принимал препарат Он , чуть меньше-его жена.. Около двух недель назад,пропустив один день выдачи(по своим причинам..) он пришёл на сайт,через час после его закрытия. Будучи пьяным,он не понимал-почему ему не выдают препарат. Старшая медсестра-отказала в выдаче,.. Тогда он не отдавая себе отчёт в поступке-схватил её за горло и стал душить.., На следующий день,его исключили из программы, мало того-ст.медсестра,написала заявление на него,обвинив в побоях(..??)

Good day to everyone. I just wanted to share the news concerning our ORT site and the patients. There is a guy Lesha in our town, He attends the program together with his wife. They have a little daughter …He is on medications for about a year, and his wife just a little bit less. A couple of week ago he missed the business hours of the site (for his own reasons) and came to the site one hour after it was closed. He was drunk and could not understand why he can not receive the medicine. The senior nurse refused to give it to him. Then he started to strangle her not understanding what he was doing … next day he was expelled from the program and the nurse filed a report accusing him beating her.

In a few days the other patients of the ORT site started to worry about Lesha and his wife and decided to visit him. They found Lesha in a very bad condition, drunk and with severe abstinent syndrome. They decided to help him. Vovan9619 wrote:

В-общем провели с ним беседу,где он клятвенно пообещал-прекратить Пить и извиниться перед медсестрой. После чего было написано ходатайство глав.врачу, с просьбой восстановить его на Программе ЗПТ.. Глав.врач-подписал ходатайство,и спустя несколько дней,-Лёшу восстановили. …. В кругу Тех Людей,кто за него поручился-Лёша клятвенно пообещал не приходить на сайт-в нетрезвом состоянии,зная о том,-что может за ЭТО,получить “по ушам”-от Своих же,которых он может подвести… А мораль сей Истории такова;- ЗПТ и Алкоголь(даже – пиво !!!..)- НЕСОВМЕСТИМО !!!!

So we talked to him and he swore that he would stop drinking and apologies to the nurse. Than we submitted the appeal to the head doctor asking to renew him into the ORT program – and the doctor agreed to do this and in few days Lesha was renewed into the program. ….Lesha promised that he will never come to site drunk again to people who were like him. And he knew that he could be punished by these people and he could not let this people down. And the moral of this story is – ORT and alcohol (even a beer) are not compatible!!!!

After a few days the bloggers posted the second part of this story and it was not a story with a happy and. Vovan9619 posted:

Участник ЗПТ “ЛЁША ВАЩЕНКОВ”, благодаря тому что его все участники ЗПТ взяли на поруки и человеческому отношению главврача Орищак Н.С. Был возвращён на программу ЗПТ. Но … его здоровье было на столько подорвано, что он первый день еле пришел, второй день его привела мать. Лёша реально бредил , по всему видно, что очень БОЛЬШИЕ проблемы со здоровьем. Это не могли не заметить “наши” врачи из сайта и поэтому в срочном порядке он был направлен ….на второй этаж (стационар наркологии). Его осмотрел врач-нарколог … и .. определил, что ему нужно срочное обследование ХИРУРГА! Через 10 мин он уже был у хирурга, (рядом 50 метров поликлиника №1) Хирург в СРОЧНОМ порядке направил Ващенкова Лёшу в приёмное отделение ЦРБ г. Шостка.
НО, КАК ТОЛЬКО УЗНАЛИ ,ЧТО ОН НАРКОМАН, ЕМУ ОТКАЗАЛИСЬ ДЕЛАТЬ ОПЕРАЦИЮ, О НЕОБХОДИМОСТИ КОТОРОЙ, САМИ ЖЕ И ГОВОРИЛИ!
Лёше становилось все хуже , да и мать начала плакать и умолять врачей о помощи… НО, на , что они решились под этим натиском-направить его почемуто в ТЕРАПЕВТИЧЕСКОЕ отделение. Где он в … УМЕР В ТЕЧЕНИИ ДВУХЧАСОВ!

Because of the efforts of the other patients and human attitude of the chief doctor N.S. Orishchak, the ORT patient ‘Lesha Vashchenkov’ was renewed into the ORT program. But his health was so weak that during the first day he could hardly walk and on the second day his mother brought him to the site. He had delusions and it was obvious that he had very serious health problems. The doctors from our site noticed this and sent him … to the second floor (narcology hospital). The narcology doctor examined him and … said that he needed urgent assistance of a surgeon! In 10 minutes he was in a surgeon’s office (the policlinic #1) is within 50 meters from the office. The surgeon urgently sent Vashchenkov Lesha to the Central Regional Hospital of Shostka.

But when doctors of the hospital learned that he is a drug addict they refused to do the surgery which they insisted on before!

Lesha was feeling worse and his mother started crying and begging the doctors to help, but they decided to send him for some reasons to the therapy department where he died within 2 hours.

The patients were sure that the main reasons of the death of his counterparts was stigma towards people living with the drug addiction from he medical personnel. They established the initiative group to attract the attention of the society to their problems and, as they wrote, “to stop the conveyor of deaths”.

Ukraine: Online Interactive Map Helps Fight HIV

Maryna Reshetnyak — Wed, 01 Feb 2012 11:39:49 +0000

Ukraine has a high number of HIV infected people. To address this problem private Ukrainian Charity Elena Pinchuk ANTIAIDS foundation in partnership with the Ukrainian office of Google launched the news social service maps.antiaids.org on December 1, 2011, the World Aids Day. The new service will help Ukrainian Internet users easier and faster to find the sites of HIV testing in their region as well as condom vending machines.

The web-site of ANTIAIDS foundation reported that in the framework of the project for the fist time in Ukraine a database 927 sites of HIV testing was created.

The interactive map shows not only the address of a particular site but also telephone numbers and the information about business hours. It also lists whether the site is unanimous or a person needs to present the ID. The database includes 173 sites of fast testing where a person can get the results in 15-20 minutes.

In addition, the HIV Testing Sites map service contains a FAQ section where a user can find all the information necessary for HIV testing such as how long to wait for a test results, is it possible to receive the results via e-mail or telephone, how much it will cots, what is the procedure of the testing and how to interpret the result, what to do if the results are positive or negative.

All this information is available not only in Internet but also on HIV/AIDS national hotline.

The condoms wending machines map helps people of major Ukrainian cities to find the nearest machine and to receive the instructions on how to use it. The advantages of the machines are speed and simplicity and that people can purchase the condoms anonymously, without attracting attention of other people and without and interaction with shop assistance like in supermarkets or pharmacies, ANTIAIDS web-site reported.

According to Google Ukraine blog the future plan of the project includes implementing improved navigation map and preparation of the mobile version of the service.

Ukraine: Harm Reduction Activists Appeal to the Executive Director of the Global Fund

Maryna Reshetnyak — Sun, 29 Jan 2012 21:19:41 +0000

At the middle of January the Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria Michel Kazatchkine visited Ukraine. Ukrainian harm reduction activists used this opportunity to advocate the rights of opiate replacement therapy (ORT) patients.

The Association of the Substitution Treatment Advocates of Ukraine submitted the appeal to Mr Kazatchkine with an outline of current situation with the opiate replacement therapy (ORT) in Ukraine and a list of the most significant problems with its implementation. The activists of the Association urged the Executive Director of the Global Fund to discuss the strategy of ORT implementation with the government of Ukraine. The appeal was personally handed out to Mr Kazatchkine by the member of the Association Anton Basenko.

Michel Kazatchkine, Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria. Image by ICASO. CC BY-NC-ND.

In its letter to Mr. Kazatchkin the Association expressed gratitude to the Global Fund for the financial support of the substitution therapy in Ukraine. Currently 6632 patients receive the treatment, 18.1% out of them have TB and almost 45% are HIV positive. Although in general the ORT programs in Ukraine are very successful there are a few issues which need to be solved with regards to its implementation. The Association, which main goal is improving of the quality and availably of ORT, listed the issues in the letter and on its web page.

The first issue the letter outlined was absence of government funding for ORT programs which, the Association believes, harms the image of the programs as Ukrainian doctors often tell the patients that the program will despair when the Global Fund stops the funding.

The second identified issue was luck of availability of HIV treatment and treatment of the opportunistic infections such as hepatitis, TB and other diseases for patients which require stay in a hospital and a continuation of ORT. The patients often have to make a choice whether to continue the ORT and hide from the doctors the other health problems or to treat other diseases and to stop ORT.

The final serious issue is absence of an opportunity for the patients to receive Methadone through a pharmacy with the prescription of a doctor. This significantly slows down the process of re-socialization of the patients.

The activist Anton Basenko, who delivered the letter to the Executive Director of the Global Fund, concluded that today ORT programs in Ukraine became larger in quantity but not in quality.

The web-site focused on the issues of people living with the drug addiction Motilek posted another letter of appeal to Mr Kazatchkine. In his very emotional letter the harm reduction activist and the ORT patient Igor discussed the tendencies in ORT provision in Ukraine and identified the possible threats.

Igor claimed that the ORT program has significantly improved his life. He wrote:

Уже около 3-х лет я получаю заместительную поддерживающую терапию (ЗПТ) метадоном в одной из Киевских клиник. Мне 34 года. Из них 8 лет я кололся «ширкой» и 4 года провел в местах, как говорят у нас, не столь отдаленных.

Получаю ЗПТ, и вот уже пару лет, как почувствовал новый вкус жизни. Я осознал, что бездарно потратил в погоне за наркотиками много лучших лет своей жизни. Слава богу, я не заразился СПИДом. И это чудо. Многие ребята из моей прошлой «наркоманской» жизни сгорели от «дури» и от этой страшной болезни.

Я действительно называю эту часть жизни, когда я кололся, своим прошлым. Я остаюсь наркозависимым, потому что я получаю метадон каждый день, но я чувствую себя абсолютно нормальным человеком. Я не кайфую. Я просто живу как обычный человек. … Я работаю, женился, и мы с женой ждем ребенка. Сейчас это моя самая большая радость. Ей-то я и хочу с Вами поделиться. Этой радостью я обязан Альянсу, ГФ, врачам и медсестрам в больнице, куда я хожу каждый день. И я не хочу возвращаться в свое прошлое. Спасибо Вам, Мишель

It has been three years since I started receiving the opiate replacement therapy (ORT) with Methadone in one of the Kiev clinics. I am 34. For 8 years out of this I had used heroine and 4 years I spent in a prison.

I receive the ORT and it is already 2 years as I started to feel a taste of a new life. I realized how I wasted the best years of my life in hunting for drugs. Thanks good I did not get HIV. And this is a miracle. Many guys from my past life were ‘burned out’ with the drugs and this horrible disease.

I really call the part of my life when I injected the drugs ‘the past’. I am still a drug addict as every day I receive Methadone but I am totally normal person. I do not have any kef (euphoria from drugs). I live as an ordinary person. … I work, I got married and now I and my wife are waiting for a baby. This is my biggest joy and I want to share it with you. I would not have this joy without the HIV/AIDS Alliance, Global Fund, doctors and nurses of the hospital which I visit every day. I do not want to return to the past. Thank you for this, Michel.

Igor was very concerned with the future of ORT program is Ukraine and how it might affect his life. He was worried about the decision of the Global Fund to move the implementation of the program from the nonprofit organizations to the Ministry of Health Care of Ukraine. Igor believes the Ministry is very bureaucratic and very corrupted and this would negatively affect the implementation of ORT.

Igor was also alarmed with the decision of the Fund in three years to significantly reduce the funding for ORT programs in Ukraine. He urged Mr. Kazatchkin to make sure that Ukrainian government would continue the provision of the Methadone and Buprenorphine to all patients who need them.

The active steps of the harm reduction activists achieved positive results. After the meeting of Michel Kazatchkine with the Prime Minister of Ukraine Mykola Azarov the official web-portal of Ukrainian government reported that Ukraine will continue implementing the substitution therapy programs in a large scale as a mean of HIV prevention.

Ukraine: Photo Art Helps Fighting AIDS

Maryna Reshetnyak — Wed, 04 Jan 2012 05:46:56 +0000

On the occasion of the World AIDS Day (November –December, 2011) a photo exhibition of the project “AIDS- Open Faces” took place in ‘Lavra’ gallery in Kiev. The exhibition was devoted to people whose life was affected by HIV/AIDS and it was organized by the private charity Elena Pinchuk AINTIAIDS Foundation. The pictures of HIV positive people and their families presented on the exhibition had been taken by a well-known photographer Brent Stirton from New York agency ‘Getty Images’.

The images shown at the exhibition (available online) are fascinating and many of them are not easy to look at. Brent Stirton together with the activists of the foundation and other partner NGOs traveled all over Ukraine and filmed street children in Odessa, gypsy settlements, families with HIV positive children and HIV positive orphans, injection drug users, prostitutes and imprisoned people, reported the web-site of AITIAIDS Foundation. The project contains pictures of very sick people as well as ‘stories with happy end’ – images of people whose lives were saved with the antiretroviral therapy which is currently available in Ukraine thanks to international support or images of people who stopped using drugs or images of HIV positive orphans who found new families.

It was the second time when Brent Stirton came to Ukraine to film people affected by HIV. The first time was in 2005. In his video appeal Stirton compares the impressions from his first and second photo shootings.

A journalist and a blogger Olga Ivanenko who helped Brent Stirton to organize the filming in Ukraine both in 2005 and 2011 shared her reminiscence of work on the project in her blog. She wrote:

В 2005 году я принимала участие в проекте – помогала иностранному фотографу в его работе над документальным фотопроектом о проблеме ВИЧ/СПИДа в Украине. Несмотря на многочисленные ограничения в использовании снимков, фотографии Брента Стиртона до сих пор “живут” в сети своей жизнью. Они достаточно спорны и провокативны, они – “на грани”, и потому вызывают ожесточенные дискуссии и споры.

В этом году Брент Стиртон приехал в Украину снова и отснял еще одну документальную серию об проблеме ВИЧ/СПИДа в Украине. Мы встретили некоторых “героев” первой серии. Встреча с одними радовала – они смогли начать новую жизнь, нашли поддержку, получают антиретровирусную терапию. Встреча с другими огорчила – они не изменили своих привычек, постарели (хотя это странно звучит, когда говоришь о 25-30 летних). Некоторых уже нет в живых. Как и шесть лет назад, мы также встретили невероятных людей. Когда у них диагностировали ВИЧ, от них отворачивались близкие и друзья, их увольняли с работы, им угрожали… Но они выстояли. Доказали себе и другим, что они сильные, и что жизнь продолжается. Хотя теперь она зависит от строгого графика приема лекарств. А также, к сожалению, от того, провело ли государство очередной тендер по закупке лекарств для АРВ терапии…

In 2005 I took part in a project – I helped one foreign photographer in his work on the documentary photo project on HIV/AIDS issues in Ukraine. Despite many limitations on use of the images, Brent Stirton’s pictures still ‘live their own live’ in the net. They are fairly disputable and provocative, they are on a margin that is why they are argued and discussed so much.

This year Brent Stirton came to Ukraine again and filmed one more documentary series on HIV/AIDS in Ukraine. We met with some of the ‘heros’ of the previous photo shooting. It was a pleasure to meet some of them – they had been able to start a new life, found a support, started receiving antiretroviral treatment. Meetings with the other were upsetting – they had not changed their life habits, they get aged (it sounds strange when you use this word talking about people of 25-30). Some of them have passed away. As six year ago we met fascinating people. When they were diagnosed with HIV they were turned down by their relatives and friends, they were fired from their jobs, threatened… But they had survived. They have proved to themselves and to others that they are strong and life continues. However they life now is depends on strict schedule of taking the drugs. And, unfortunately, on the question whether the government completed a new tender to purchase the antiretroviral medicines.

Olga noted that the participation in the photo project completely changed her stereotypes about HIV positive people. She posted:

Некоторые из героев сюжетов переворачивают представление о тех, кого принято считать “опустившимися”. Как бы низко ни пал человек, многие все же способны сохранить человечность – ухаживать за парализованной матерью, переживать за свою жену и ребенка и делать все, чтобы защищить их после своей смерти…

Some of the heroes of story completely turn over my notion of those who considered being degraded. Does not matter how descended people are, many of them can still stay human – to take care about paralyzed mother or worry about their wives and children and to do everything to protect them after they pass away.

Olga thinks that the main task of the project is to make the society to think about the people affected by HIV/AIDS. She wrote:

Вторая серия – не менее провокационна и спорна. Она тоже вызовет бурю дискуссий о людях, живущих с ВИЧ, и о том, нужно ли это все показывать. Дискуссии – это хорошо. Мы все, причастные к созданию этого документального проекта, считаем, что это часть нашей жизни и об этом нужно говорить. Нельзя просто закрыть глаза и сказать “я этого не вижу, значит этого не существует”. Если это заставит задуматься и что-то изменить в своей жизни хотя бы одного человека, значит время и усилия были потрачены не зря.

The second part of the project is not less provocative or disputable. It also initiates a storm of discussions about people living with HIV and about whether it worth to be shown. Discussion is a good thing. All of us, involved in the project, believe that this is a part of our life and it should be talked about. You cannot just close the eyes and say “I do not see this, so it does not exists”. If this make to think and to change something in his life at list one people, than all the time and efforts were spent not for nothing.

Ukraine: The Role of the ASTAU Information Manager

Maryna Reshetnyak — Fri, 30 Dec 2011 19:14:46 +0000

Svetlana Sharamok is an information manager for the Association of Substitution Treatment Advocates of Ukraine (ASTAU), of which the Rising Voices grantee project the Drop-In Center is a member. The ASTAU has also been a driving force behind many of the citizen media initiatives that we have been featuring over the past year. Svetlana recently started her position with ASTAU in late 2011. With her background in journalism, she is responsible for updating their website, Facebook account, and for promoting the work of ASTAU among the Ukrainian public. In this email interview with Rising Voices, she talks about herself, her job in the association, and her future plans for using citizen media to raise awareness about her organization and the people they serve.

Svetlana Sharamok, information manager for ASTAU

Rising Voices: Could you please tell us a little bit about yourself?

Svetlana Sharamok: I am young, beautiful, and happy. And I worked as a journalist before. I like to create and implement various social projects, to do something that makes people to look at the ordinary things from a new perspective, such as garbage or asphalt or to place gloves and hats on the trees to keep them warm in the winter. I also adore traveling.

RV: How did you join the Association and what do you do as the information manager?

SS: Working as a journalist, I never thought that I would join the Association, I did not even know about its existence. When I came to meet with Olga [Olga Beliayeva, the head of the Association] and when I saw my portrait published in the ‘Konoplianaya Pravda’ [newsletter, published by the Association], I realized that perhaps somehow I would work there. But it has happened much faster than I could even imagine. I started to work in the Association just for a few months, but I was able to realize that there is no such word as ‘impossible,’ we can do everything, if we do not know something – we can learn. Perhaps this philosophy is what I like the most in my work.

I must stay in touch with the members of the Association, update the Facebook page of the Association, update the news page on the web-site – these are my main job responsibilities. I have a lot of work to do, but it is diverse and interesting. Now I often go to the substitution therapy sites, meet the doctors, nurses, patients, and I have a feeling that soon I will meet the police as well. Now, before the elections of the Board of the Association, I met with many of the activists and the regional representatives.

RV: Could you please describe your typical working day?

SS: I am an information manager. For example, today on my agenda I must call approximately 80 members of the association meaning that about 50 people will wish something good for me, and I am waiting until all these wishes will come true. Some people will share with me the news that their child went to school, somebody will tell me that they have found a job, some members are preparing to be on the TV talk show about drugs. Often I call a person for the first time, but I have a feeling that I am talking to my old friend.

In the morning, I often visit ORT sites and meet with doctors and the patients. The patients are in a hurry, they need to take the medication and then to run to their jobs. Some people are coming to the sites with their relatives, not because they force them to have the treatment, but just to protect them from the police, but this does not always help.

RV: What are your future plans as an information manager of ASTAU?

SS: I would like to produce a short documentary about people who take part in the substitution therapy. I do not understand why there is so much discussion about the opiate replacement therapy (ORT), I often meet these people and they more look like users of insulin than users of drugs, but of course you can find various personalities… My other plan is to increase the internet activism of the bloggers – ORT patients both on the Facebook and our web-site as I believe that their experience is interesting and useful.

Svetlana Sharamok, information manager for ASTAU

RV: How you would describe the members of the association?

SS: Once I was asked how I would describe a former drug addict. I thought much before answering this question. Really, who are the patients of the substitution therapy? They do not look like a community of bikers, or bicyclists or a community of marijuana lovers. These are people with various life stories and from various professional backgrounds. Igor makes documentaries about the lives of women, the family of Sergey and Lena works at a charity fund and helps other people to reduce the harm from drug usage. Eugene is a pharmacist; Olga is a director of the charity fund. Life is life and it does not give any credit to people who used to take drugs.

RV: What do you think the Association does for its members? How does it helps them?

SS: For some people, the Association is their life. Sometimes you call such people and hear about how they fight for the continuity of treatment [availability of Methadone in other medical establishments], and then in a few days you see the news that in this particular town the first patients received the medicine in the hospital. Some people have joined the Association just to know where to go and who they should address when they need assistance. We are a sort of buffer between medical personnel, health care officials, and people who receive the substitution therapy or just want to start receiving it.

Ukraine: Taking to the Web to Raise Funds and Awareness

Maryna Reshetnyak — Mon, 26 Dec 2011 16:07:53 +0000

According to UNAIDS estimates, more than 1% of Ukrainian people are living with HIV, but only one-third of those infected are aware of their status. About 3,000 people die because of AIDS-related diseases every year in Ukraine. Although unsafe drug use is still playing the major role in spreading the infection, more and more new cases of transmission of HIV are associated with unsafe sex behavior.

As part of the fight against the epidemic, the largest private Ukrainian charity the Elena Pinchuk ANTIAIDS Foundation has come up with creative ideas aimed at rising awareness within Ukrainian society about HIV/AIDS issues. In addition, they collect funds to help people living with HIV/AIDS across the country. These innovative charity initiatives are mostly web-based and involve partnership with large Ukrainian online services and social networks.

Beginning in 2007, the Elena Pinchuck Foundation has been running the Fashion AID project. The idea of the project is that well-known Ukrainian fashion designers, pop-stars, and TV presenters, together with amateur designers develop creative T-shirt designs promoting safe sex behavior. These T-shirts are available for purchase on the project website. All funds collected from the selling of the T-shirts are used to help Ukrainian children living with HIV. The updates about the new designs available are also posted on the Facebook page of the project.

On December 1, 2011 and in commemoration of World AIDS Day, the Elena Pinchuk Foundation, together with online information exchange service ex.ua, ran an HIV/AIDS awareness campaign among Ukrainian internet users. In 24 hours, the campaign reached more than 1 million users who viewed the awareness videos on the YouTube channel of the ANTIAIDS Foundation channel, which was a new record for Ukrainian social projects. About 100,000 users visited the website of the Fashion AID project, reported the web-site of Elena Pinchuk Foundation, and most of this visitors were people aged 18-35, which are the most vulnerable to HIV infection. In the framework of this awareness project, a permanent section with a collection of HIV/AIDS awareness videos from all over the world was created on the ex.ua website.

"Stars on Sale" project logo

In March 2011, the ANTIAIDS Foundation ran another online project aimed at collecting funds to purchase new modern equipment for cleaning donors’ blood from various infections including HIV. The project ‘Stars on Sale’ was implemented in the partnership with one of the biggest Ukrainian blogs korrespondent.net and the Ukrainian online auction Aukro.ua. The idea of the project was that Ukrainian users could bid on prizes donated TV, political, and sport celebrities. Among the auction items were such things as personal training with the Olympic Champion in Gymnastics Lilia Podkopayeva , golf with Ukrainian soccer star Andriy Shevchenko participation in a popular TV talk show, or a visit to the plenary meeting of Ukrainian parliament.

Logo of 'Dreams come true' project

Finally, on December 15, the ANTIAIDS Foundation started one more online charity project ‘Dreams come true’. This Christmas project gives every person an opportunity to fulfill a dream of a HIV positive child. In partnership with International HIV/AIDS Alliance and All-Ukrainian Network of People Living with HIV, the Foundation collected dreams from 800 HIV positive children from various regions of Ukraine and posted them on the web. People could donate either money or send gifts to fulfill a dream of a child, such as 11 year-old Maxim who wished ‘to have a new bicycle’ or 5 year-old Anastasia who wished ‘to have a doll and a lot of candies’.

According to the report of Elena Pinchuk Foundation in 5 days since the start of the project, Ukrainians made 592 HIV positive children's dreams come true.

Russia: Global Protests At Russian Embassies Mark World AIDS Day

Maryna Reshetnyak — Tue, 20 Dec 2011 20:48:44 +0000

Recently the activists of the Association of Substitution Treatment Advocates of Ukraine (ASTAU) posted an overview of the latest events marking the World AIDS Day all over the globe. The major highlight of the analysis was the rallies at the Russian Embassies around the world against the brutal and cruel treatment of people living with drug addiction in Russia. The protests took place in London, Stockholm, Berlin, Bucharest, New York, Sidney, Canberra, Barcelona, Berlin, Toronto, Mexico and Tbilisi. The demonstrations were facilitated by the International Network of People who Used Drugs (INPUD) and a few other non-profit organizations. Details of the Russian Embassy Protest called “Shame, Russia, Shame” were covered at the special blog dedicated to the event. A big report was also published on the INPUD web-page.

The Russian Embassy Protest was announced in the middle of November when INPUD published the appeal to the Russian Government arguing for changing the attitude towards drug users and the harm reduction programs such as needle exchange and opiate replacement therapy (ORT). The appeal was republished by the ASTAU web-resources as a sign of solidarity with the Russian peers.

The appeal stated that the current treatment of drug users by the Russian government was unjustified and cruel which led to thousands of unnecessary deaths. Unwillingness of the government to legalize of the needle exchange and ORT programs made unavailable to millions of people the services which could help them to attain ‘the highest possible level of health’.

According to INPUD the Russian government ignores the international scientific opinion concerning the influence of such program on the reduction of spread of HIV/AIDS among injection drugs users as since 2005 main ORT medications Methadone and Buprenorphine have been included in the List of Essential Medicines of the World Health Organization. So, availability of these medications is a part of essential human rights.

The INPUD Appeal contained statistics describing the situation with spread of HIV/AIDS among Russian drug users. According to INPUD there are about 5 million people who use drugs in the country, 1,7 million out of them are opiate injection drugs users; out of this number 37,2% are HIV positive, and in some regions this rate is as high as 75%. According to official data about 80% of HIV infection from 1987 to 2008 is associated with injection of drugs. Main way of infecting is use of contaminated syringes and needles. The source of almost 60% of newly identified HIV cases in 2010 was contaminated equipment.

In the same time, only a few needle exchange programs exists in the country. They are run by small NGOs and do not cover all needs. The Russian government does not support such programs as, according the Russian Minister of Health Care, the provision of the sterile needles and syringes would stimulate the society to be more tolerant to the drug users which is against the Russian law, INPUD reported.

INPUD stated that despite of the recommendation of many respected international organizations the harm reduction programs which allow significant reduction of injection use of drugs such as ORT is still illegal. Moreover, people who advocate such programs are officially considered criminals. The legal status of the needle exchange programs is not clear as well, as all harm reduction programs are viewed by current Russian government as a promotion of drugs.

Use of any drug in Russian is considered to be a crime and new stricter laws which are currently considered by the Russian law makers would allow a criminal prosecution of every drugs user. INPUD reports that this would marginalize people living with drug addiction even more and increase the spread of HIV/AIDS in the country.

INPUD activist urged the Russian government to start the harm reduction programs aimed at medicating of the spread of HIV/AIDS such as ORT and needle exchange, cease the criminal responsibility for use of drugs, provide Anti-Retroviral Therapy for HIV positive drug users, stop discrimination of people who use drugs and respect their human rights, stop persecution of harm reduction activists and involve the people who use drugs in developing of the policies aimed on improvement of their lives.

Photo by Anton Belitskiy, “Ridus” agency of citizens’ journalism, www.ridus.ru

In Russia itself on December 1, 2011 the non-government organization “Patients’ Cotrol” organized an unauthorized rally next to the building of the Ministry of Health Care urging for more attention to the problems of HIV treatment in Russia. The activists brought to the entrance of the Ministry a few symbolic coffins, a small brass band played funeral march. The rally meant to make the health care officials to understand that absence of adequate treatment of HIV in particular lack of anti-retroviral medications led to many unnecessary deaths. “Patients’ Control” and ‘Ridus” agency reported that some of the participants of the rally were arrested by Russian police.

Photo by Anton Belitskiy, “Ridus” agency of citizens’ journalism, www.ridus.ru

Ukraine: Using Video for Advocacy

Maryna Reshetnyak — Mon, 12 Dec 2011 19:56:52 +0000

As we wrote earlier, the main problems which the Ukrainian patients of opiate replacement therapy (ORT) face is the absence of continuity of the therapy in the medical establishments other then special ORT sites where patients have to personally come every day to receive the medication. This situation is true in most of the rejoins of Ukraine with a few exceptions. Avoiding the abstinent syndrome many patients refuse from a treatment which requires staying in the hospital. Before joining the substitution therapy most of the patients had been injection drug users for many years, many of them are HIV and Hepatitis C positives, infected with TB and other infectious diseases, so the opportunity to receive a decent medical treatment is crucial for them.

As a part of advocacy efforts aimed on solving the issue with the continuity of ORT treatment, Ukrainian harm reduction activists produce videos which describe the situation around this problem, tell stories of real people who suffer because of inertness of the health care authorities and report the small successes in this regards.

The video produced by an activist of the Association of Substitution Treatment Advocates of Ukraine Igor Kuzmenko not only presents the personal stories of a patients suffering from the problem but also contains the quote from the medical doctor of Donetsk Methadone site saying how important the continuity of ORT treatment is for her patients. The regional representative of the Association Natalia Zlenina talks about the steps the Association is making to change the situation for better. The video ends with the appeal to the society to help to solve the problem and the words “Don’t let us die”.

The video story of the ORT patient Elena is filmed by one of the hero of the previous post Eugene Selin. The sad story covers a yearlong battle of the Donetsk harm reduction NGO ‘Our Victory’ with local health care authorities to help Elena to receive the Methadone in the hospital where she needs to stay because of the surgery she requires. Unfortunately, this struggle has not brought any results yet.

The video posted by the activist of the NGO ‘Chance’ from Sumy could be viewed a small success story. The hero of the video was an active injections drug user and started the ORT treatment on the recommendation of his doctor in a TB clinic. Now he stays in TB hospital and is able to receive both TB and ORT treatment in the same place.