www.aidsactioneurope.org hivaidsclearinghouse.eu No 2, May 2012 Russia flag
Europe's 2nd conference on Quality in HIV Prevention
IQhiv hosted the 2nd Conference on Quality in HIV Prevention in the European Region in Berlin on 23rd-24th April 2012. This conference was a follow-up to one held in 2008 on the same topic.
In fact, IQhiv, which is a joint initiative of WHO Europe, the German Federal Centre for Health Education (BZgA) and AIDS Action Europe, grew directly out of opportunities and recommendations identified during the 2008 conference.  
ROST: 5 success stories
2011 has been the second year of the project ROST, ‘Responding to HIV through Organisational Support and Technical Cooperation in Eastern Europe and Central Asia'. This year’s training topic was resource mobilisation, and the project encompassed face-to-face trainings, an e-learning module including an interactive webinar and individual consultancies for NGOs and CBOs in Eastern Europe and  Central Asia. Over 30 NGOs have been able to learn, network and exchange ideas.
‘It was a great pleasure to take part in this training. The trainers were super and my expectations were met in all ways. When I return to my organisation I can share all my knowledge taught by the trainers.’ – Marine Gogia, Georgian Harm Reduction Network.
ECDC interim report to monitor HIV/AIDS Commission Communication and action plan
The ECDC recently launched the report “Monitoring implementation of the European Commission Communication and Action Plan for combating HIV/AIDS in the EU and neighbouring countries, 2009–2013". It concludes that the Communication and Action Plan have had an important impact across Europe, for example by supporting initiatives to expand targeted HIV prevention services for populations most affected by HIV, including men who have sex with men, people who inject drugs, migrant populations and sex workers. The AIDS Action Europe office coordinated the response of civil society to the monitoring questionnaire, in our role as HIV/AIDS Civil Society Forum (CSF) co-chair.
AIDS Action Europe: the movie
Thanks to our friends Ferenc and István from the Hungarian Civil Liberties Union (HCLU) there is now a film about AIDS Action Europe, featuring different members of our network as well as staff and steering committee members who tell you all that you need to know about AIDS Action Europe.
Curious? Watch it here.
Upcoming events
22-07-2012 - 27-07-2012 (Washington D.C, USA)
05-10-2012 - 06-10-2012 (Milano, Italy)
12-10-2012 - 13-10-2012 (Cardiff, Wales, UK)
11-11-2012 - 15-11-2012 (Glasgow, UK)
Guidance on couples HIV testing and counselling, including antiretroviral therapy for treatment and prevention in serodiscordant couples
New WHO guidelines recommend offering HIV testing and counselling to couples, wherever HIV testing and counselling is available, including in antenatal clinics. For couples where only one partner is HIV positive, the guidelines recommend offering antiretroviral therapy to the HIV positive partner, regardless of his/her own immune status (CD4 count), to reduce the likelihood of HIV transmission to the HIV negative partner. 
Monitoring implementation of the European Commission Communication and Action Plan for Combating HIV/AIDS in the European Union and neighbouring countries, 2009–2013
This interim report summarises the progress made on implementing the policy priorities contained in a European Commission Communication entitled Combating HIV/AIDS in the European Union and neighbouring countries, 2009–2013. It identifies the areas in which further progress is required and sets out specific recommendations. The report is based on information and feedback from a number of interested parties and reflects the contributions of a wide range of individuals and organisations. 
Annual Report 2011
We are presenting our 2011 annual report. 2011 saw the second year of project ROST, responding to HIV through Organisational Support and Technical assistance in Eastern Europe and Central Asia. Over 60 NGO’s have been trained and consulted in the challenging field of resource mobilisation. Furthermore, AIDS Action Europe played an important role in the European projects IQhiv and HIV in Europe. For more details read the full report.
Members section: Patients in Control
The following section is devoted to the members of AIDS Action Europe. AIDS Action Europe currently unites more than 400 NGOs in 46 countries in Europe and Central Asia. In each e-news, one of our member NGOs presents its organisation and its activities to the rest of the network. We hope that this will inspire other NGOs throughout the region and that it will encourage further linking and learning between our members. Together we can work to a better response to the HIV epidemic!
Do you want to present your organisation in our next e-news? Please contact our communications coordinator Maureen Sellmeijer.

Our member: Patients in Control
The Fight for the Right to Life
Whether we like it or not, every one of us will one day become a patient.  Some more rarely, others more often, some on a regular basis. At the same time, we can all agree that the position of a patient in Russia, especially one who is neither rich nor has good connections, is not very enviable. In fact, the legal right to quality health care that is guaranteed by the government is only implemented in our country on a very selective basis.  But when a person suffers from an illness that is chronic or potentially fatal and yet doesn’t receive appropriate treatment or care, this violation of the patient’s rights can pose a direct threat to life. How can this risk most effectively be counteracted? From the point of view of members of the public initiative Patients in Control: unite and work together.
Why access to drugs is so important
The informal movement Patients in Control was founded in 2010 by people with HIV, viral hepatitis and other illnesses, along with people who wanted to defend their rights. The catastrophic situation that had arisen in that year with regard to HIV treatment greatly helped to unite the activists – people in many regions throughout Russia were simply not able to obtain the vital medications that were due to them according to law. It is here worth recalling a few facts about HIV. Contrary to myth, if the human immunodeficiency virus is detected in a person, it is by no means a fatal diagnosis. Special drugs – so-called antiretroviral therapy – prevent HIV from developing into AIDS and therefore, a person infected with this virus can nonetheless live to old age. There is however one very important condition:  once a person starts taking the drugs, he must continue to do so regularly, every day, following a very strict regimen. Otherwise, the drugs will sooner or later stop working, the virus will mutate and begin to multiply, which will lead to a sharp deterioration in health and eventually death. Antiretroviral therapy is supposed to be available to people with HIV at no cost – that is the law. However, the fact is that this right is by no means observed everywhere and therefore, in order for people to survive, this right must be defended.
Activists in action
The activists of Patients in Control have been forced to undertake different measures to defend their right to life. These include:
-     A symbolic funeral procession for treatment and prevention in front of the headquarters of the Ministry of Health in Moscow (captured in a video clip called: The Ministry of Health is a funeral Bureau);
-     Demonstrations against the unavailability of vital medications and tests in various regions in Russia;
-     Collection of statements from patients about the unavailability of drugs;
-     Appeal to the Prosecutor’s Office and the courts;
-     Round tables with doctors and officials.
Currently, the main goal of Patients in Control is to work with the Ministry of Health – a department, around which recently a number of issues have flared up, from the acquisition of furniture at a cost of five million rubles and the lobbying interests of certain pharmaceutical companies to drugs and test kits that weren’t purchased. Last year, for example, after the relevant appeals were filed, the Prosecutor’s Office announced that numerous violations had been committed by the Ministry of Health when carrying out auctions for the procurement of drugs treating HIV.
Not a protest movement
However, despite the necessity of such harsh measures, activists particularly emphasize that they are not a protest movement. Patients in Control stands up for the quality and availability of treatment for all people and always supports doctors and other health workers. The appeal made by Patients in Control to the country’s medical community on the threshold of the Pirogovski Congress speaks to the fact that, among other things, "only the combined efforts of doctors and patients will create that driving force with which it will be possible to build a better system and thereby stop the spread of the epidemic."
It has been necessary to resort to unauthorized activities. Members of the movement explain the reason for this quite simply: if we don’t, nothing will be accomplished. "We write inquiries, we make phone calls, we approach the mass media, we send letters to the Prosecutor’s Office – all to no avail. We aren’t taken seriously. Furthermore, we’re publicly referred to as people with unbalanced minds," says one of the movement’s members. "But we aren’t looking for any conflicts. We just want people to hear our problems and for steps to be taken so that these problems can be solved.”
Meanwhile, as the officials say unsavoury things about the activists, Patients in Control continues to keep on working. The daily agenda never runs dry. Members of movement still continue to receive information about the unavailability of drugs for the treatment of HIV, tuberculosis, and hepatitis C, and test kits to monitor patients’ health in various regions of Russia. One of the recent cases is stock-outs of medicines for treating multi-drug resistant tuberculosis in St. Petersburg. This means that Patients in Control will continue its work. The Patients in Control activists themselves say that they want to unite with other patient organizations. Recently, people with diabetes facing similar problems and complaints appealed to the Ministry of Health. Both for them and for people with HIV, the fight for the recognition of their legitimate rights to access to medicine is without exaggeration a fight for the right to life.
Read more about the activities of “Patients in Control”: www.pereboi.ruhttp://packontrol.livejournal.com.
Want to link up with other member NGOs? Like us on Facebook and meet them on Member Monday!
News from the AIDS Action Europe Steering Committee
On April 2-3, the AIDS Action Europe steering committee met for its biannual meeting in Milano, Italy at the premises of our member organisation LILA. The meeting agenda was a combination of strategic discussions as well as planning and monitoring of the 2012 and 2013 work plans. Key topics on the agenda: 
  • Setting up a European network of legal experts
  • Future of project ROST
  • Increasing our advocacy actions in Eastern Europe and Central Asia
  • Agenda of the next HIV/AIDS Civil Society Forum
  • Preparations for the International AIDS Conference
In the coming period, we will work on the creation of a network of legal experts. While starting small in Hungary, Switzerland and the United Kingdom, eventually we aim to reach out to the entire region. Across Europe there is no strong advocacy on the law and human rights and at present the European Convention on human rights isn’t as yet the standard for our entire region. We aim to engage legal experts on anti-discrimination who are interested in HIV related issues. The network will not address specific cases, so will do no litigation, but will start with getting an expert legal comparison of countries. In the near future we will contact our members and other stakeholders to learn more about diverse regional perspectives and needs.
The Steering Committee will broaden its advocacy actions beyond the important work and advice already undertaken as co-chairs of the HIV/AIDS Civil Society Forum. In 2012 we agreed to focus our advocacy on influencing the Commonwealth of Independent States (CIS), seated in Belarus.  Since our Chair is from Belarus and we plan to have our next SC meeting there, this seems to be a perfect opportunity.  We intend to focus on access to quality information on HIV; mother to child transmission; and price of ARVs.
The meeting in Milan was closed with a joint session between our office staff and steering committee and our local members, as well as other stakeholders.  There was shared concern about diminishing funding for effective prevention, both in Italy but also in Steering Committee members countries. 
The minutes of the meeting will be published on www.aidsactioneurope.org shortly.
AIDS Action Europe office


Soa Aids Nederland (STI AIDS Netherlands)
Keizersgracht 392
1016 GB Amsterdam, the Netherlands

Phone: +31 (0)20 626 26 69
Fax: +31 (0)20 627 52 21

AIDS Action Europe is the European partner of the International Council of AIDS Service Organizations (ICASO) Russia flag

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