EATG Newsletter December 2014

Newsletter Winter Issue 3 - 2014

3

EDITORIAL

4

POLICY AND ADVOCACY

6

TRAINING AND CAPACITY BUILDING ACTIVITIES

19 ECAB AND SCIENTIFIC ACTIVITIES

Contact EATG Secretariat Place Raymond Blyckaerts, 13 B-1050 Brussels, Belgium office@eatg.org Tel. +3226269640 Fax. +32 2 644 33 07

EATG is a community organisation that promotes the interests of people living with HIV/AIDS and related coinfections. EATG’s mission is to achieve the fastest possible access to state of the art medical products, devices and diagnostic tests that prevent or treat HIV and related coinfections infections, and to improve the quality of life of people living with HIV/AIDS and related coinfections in Europe.

Join us in Facebook and Twitter! www.facebook.com/ EuropeanAIDSTreatmentGroup twitter.com/ #!/EATGx

Editorial............................................................................................................................................................................................................................................... 3

Policy and Advocacy........................................................................................................................................................................................................ 4

Training and Capacity Building Activities............................................................................................................................... 6 EATG Training Academy STEP-UP................................................................................................................................................................................... 6 Increasing Capacities, Achieving Novelty (iCAN)........................................................................................................................................ 16 “ Old AIDS – Young HIV. National and European Prevention policy“ ..................................................................................... 17 A Snapshot of EATG Training and Capacity Building Activities.................................................................................................... 18

ECAB AND SCIENTIFIC ACTIVITIES................................................................................................................................................... 19

Editorial team Giulio Maria Corbelli Giorgio Barbareschi Koen Block Ann-Isabelle von Lingen Oleksandr Martynenko Tatyana Khan Yuliya Dragunova Christina Antoniadi Moritz Krehl Chris Ward Design Altitude Pictures EATG www.shutterstock.com

European AIDS Treatment Group Newsletter - Issue 3 - 2014

2

EDITORIAL

Giulio Maria Corbelli, ECAB Chair

When I was first diagnosed with HIV in 1997, I was 30. I thought I would never been able to celebrate my 40th birthday. I knew nothing about HIV treatment. Didn’t I know anything about HIV? Yes, of course I did. And of course I thought of myself as someone taking care of his sexual health. But what could I do at that point? All I knew about HIV had to do with prevention. HIV and eventually AIDS meant death. I knew nothing about any cure or treatment. Everything was just illness and sorrow.

But I was lucky enough: I wanted to fight and find a treatment. So I joined a study in Switzerland and at the same time I did my best to live my life as thoroughly as I could.

Things changed dramatically since then: I’m now 48 and yes, I’m alive and kicking! But I know I’m the lucky one. I live in a country where universal health care is available, I met good clinicians (some better than others, actually) and I really wanted to stay alive and do my best to be proud and happy. A lot of people are not that lucky.

Now I chair the European Community Advisory Board. We represent the voice of people living with HIV, HCV and related co-morbidities in the dialogue about research. The question that is always on our minds is: how can we improve the life of all those who are living with HIV or HCV in Europe, so that not one single person will be deprived of the opportunity to keep her or his infection under control? A lot have been done in terms of drugs development, that’s true: some believe that no further improvement can be done. That’s not true: we still need better drugs, safer and easier to take. We need effective drugs for those who have no other options. We need long-acting formulations. And we need a cure. There are still many scientific challenges where the voice from the communities is needed. And then we have a very long way toward universal access: still in some European communities there is the lowest rate of access to antiretroviral treatment globally. In our dialogue with pharmaceutical companies this concern is always present and drives an important part of that dialogue.

So, in these days, while we are approaching a new year, I feel like we’re going to face some important challenges. I’m optimistic and enthusiastic, but I also know we must improve our activities, taking the best results from each of them. Some wonderful young activists are going to join us: I met some of those taking part to the Training Academy and I felt inspired by their energy. I felt proud of being an EATG member and determined to do what I can to contribute to EATG mission: improving the daily lives of people living with HIV. On behalf of EATG members and staff, I wish you all a very peaceful and joyful time this winter.

Giulio Maria Corbelli, ECAB Chair

European AIDS Treatment Group Newsletter - Issue 3 - 2014

3

POLICY AND ADVOCACY New EU project “Optimising testing and linkage to care for HIV across Europe” - OptTEST The EU co-funded project OptTEST “Optimising testing and linkage to care for HIV across Europe”, in which EATG is a partner, was officially launched on 2nd September 2014. The project aims to help reduce the number of undiagnosed people with HIV infection in the European region and to promote timely treatment and care by providing tools and assessment methods to analyse and effectively respond to late presentation for HIV care and treatment, with a particular emphasis on priority regions and groups throughout Europe. The project will pilot tools and address regional differences.

The project will also extrapolate the outcomes, tools and methods developed to other countries within each region by adapting these to the appropriate geographical context. In particular, the project will: • Explore and document linkage to and retention in HIV care, and access to therapy in Europe • Develop and implement tools for indicator condition (IC) guided HIV testing across regional healthcare settings • Estimate the survival benefits, costs, and cost- effectiveness of innovative HIV testing strategies in Europe • Support in depth analysis of the data and evidence on access to testing and uptake of treatment from the PLHIV Stigma Index and develop a toolkit to overcome legal and regulatory barriers to testing and linkage to care.

The project emerged from the multi-disciplinary and multi-stake holder initiative HIV in Europe. EATG is taking in the coordination of the project, dissemination of the findings, evaluation (Work Package 1, 2 and 3) of the work and will also support work on tools to overcome stigma, legal and regulatory barriers to testing and linkage to care (Work Package 7).

The partners of the project are: • CHIP, Rigshospitalet, University of Copenhagen, DK Associated partners: • • • • • • • • •

Aids Fonds Stop AIDS now! Soa AIDS, NL European Aids Treatment Group, Belgium Public Health of England, UK St. Stephens AIDS Trust, UK MEDFASH, UK Institute Nationale de la Santé et de la recherche Médicale, France Stitching Global Network of People living with HIV/AIDS -GNP+ Instituto de Salud Carlos III, Madrid, Spain National Institute for Health Development, Tallinn, Estonia

Improving access to care and ART and retention in care for HIV and co-infections EATG collaborated with the European Aids Clinical Society in the organisation of a seminar to improve standards of care for HIV and co-infections in Europe under the auspices of the Italian Presidency in Rome on 25-26 November. The meeting brought together clinicians, researchers and community to identify critical areas of intervention to reduce late presentation and improve access to care and ART as well as retention in care. Participants examined upcoming challenges in screening, monitoring and diagnosis of HIV, HCV or HBV infected patients, integrating the latest scientific results to improve the quality of life of HIV/Hepatitis infected individuals in Europe. A meeting report was commissioned by EATG and will be available in coming weeks.

European Testing Week EATG took part in the working group supporting the HIV European Testing Week 2014 coordinated by HIV in Europe. It reached out to bring partners on board including the European Commission. EATG also reached out to rapid test manufacturers to discuss donations of kits to community organisations for the week. Alere and Biolytical expressed interest and donated kits to several organizations across Europe and a few countries in Central Asia.

Promoting innovation in screening and linkage to care in Belgium In the context of the upcoming European Testing Week, EATG together with Belgian organisations (Ex-Aequo, Médecins du Monde, Sensoa, Plate-Forme Prévention SIDA, Sidaids Migrants Siréas, Sida Sol and Breach) organised a policy seminar to promote innovative approaches to screening in Belgium on 17th November at the Belgian Senate.

The meeting sought to revive discussion around the implementation of recommendations contained in the national HIV plan (2013) for the de-medicalisation and decentralisation of screening with the new government, members of the parliament and other stakeholders.

The session started with an overview of the European context of the HIV Testing Week, best practices in screening in Europe and the legal and financial framework for testing in Belgium. It was followed by presentations on the findings of different pilot outreach projects for key populations. The last session was a moderated debate to build consensus on next steps towards decentralised and demedicalised screening and the use of rapid tests in Belgium. Participants were policy-makers, doctors, testing centres, community organisations, and journalists.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

4

POLICY AND ADVOCACY Prior to the seminar, the organisers held a press point to underline the urgency of a more proactive approach to testing allowing demedicalised and decentralised screening through rapid tests.

Members of the parliament agreed to do a rapid test for HIV to show how these test works and raise awareness on the benefits for the individual and public health.

Interaction with EU and international policy makers EATG coordinated and co-chaired the second meeting of the EU Civil Society Forum on HIV (CSF) on 24-25 November together with AIDS Action Europe. The meeting brought together community representative from across Europe, the European Commission, ECDC, WHO Europe and UNAIDS. During the meeting the ECDC and UNAIDS presented their latest data and reports and the CSF exchanged experience and knowledge on projects and agreed on joint advocacy towards keeping the issue of HIV and co-infections high on the European political agenda, especially in light of the Italian Ministerial Presidency conference on HIV/AIDS; a stronger EU position on harm reduction and civil society involvement in the context of the United Nation General Assembly Special Session on Drugs; innovative approaches to screening and linkage to care; preexposure prophylaxis development (PreP); EU funding to support the implementation of comprehensive harm reduction measures and scarce civil society participation in a joint European Commissionmember states on prevention; access to prevention, treatment and care and; community advocacy on Hepatitis C co-infection, including access to affordable direct acting agents.

The next day EATG took part in the so-called Think Tank, a meeting of member state representatives, EU and international agencies on 26 November. EATG and Aids Action Europe relayed the concerns and messages that were discussed by CSF prior to the Think Tank. The CSF coordination team provided input on discussions regarding the ECDC surveillance data and policy implications and future EU policy framework on HIV. EATG provided input into the Italian EU Presidency at the conference “Fight against HIV/AIDS ten years after the Dublin Declaration: Leaving no One Behind – Ending AIDS in Europe” in Rome on 2728 November through the external advisory board, the CSF and speakers during the conference. EATG was disappointed with the lack of preparation of the organisers and will continue to press for an update EU policy framework for urgent measure to curb the HIV and co-infections epidemics in Europe. See press release at http://www. eatg.org/news/eatgnews/.

Access to Affordable Medicines Over the last years and especially over the last few months, EATG spoke out in several multi-stakeholders meetings, and conferences at national and European level regarding the high price of innovative medicines, including ARVs, DAAs and MDR-TB medicines as an important barrier to access to treatment persons living with HIV and co-infections. EATG welcomes further examination of exchange and collaboration between EU member states and the European Commission to ensure patient access to medicines meeting unmet medical needs and sustainable healthcare systems as agreed by the EU health Ministers at their meeting on 1 December.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

5

TRAINING AND CAPACITY BUILDING ACTIVITIES

2013-2014 EATG Training Academy STEP-UP

Please keep engaging with HIV activists

On 13-14 September 2014, STEP-UP trainees met for the final Academy’s module that took place in Brussels. The last module built upon the feedback received from the trainees over the last 12 months and discussed the following topics: (a) The role of community-based organizations for advocating HIV/ HCV testing; (b) PrEP, PEP, TasP and HIV cure in the current public health discourse; (c) Psychosocial support and counseling; (d) Project proposal writing and fundraising and (e) Designing surveys on HIV-related topics.

Everything was really well-organised

Of particular interest was the session with the representatives of a pharmaceutical company. During the meeting, the trainees learnt about existing educational and capacity building programs funded by the company. Additionally, STEP-UP participants benefited from asking the representatives of the company the questions on treatment-, pricing- and access-related topics.

The content was excellent.

Thank you for having me, I really enjoyed it! The content of this module was really captivating and interesting.

you’re doing an amazing thing!

Thank you for providing me with the opportunity to participate in this programme

The following improvements were made in participants’ knowledge:

• 100% felt their knowledge of the role of community-based organisations for advocacy testing had improved • 100% felt their knowledge of psychosocial support and counselling had improved • 100% felt their knowledge of project proposal writing had improved • 100% felt their knowledge of PEP, PrEP and TasP had improved • 100% felt their knowledge of HIV terms relating to cure had improved • 100% felt their knowledge of obstacles and opportunities for HIV cure had improved Following their graduation, several trainees applied for community grants to implement projects locally. The applications are being currently reviewed. In early 2015 we will announce the winners and will keep you posted on success stories and achievements of the graduates.

Overall module 5 of the STEP-UP programme received positive participant feedback: – Over the 2.5 days of training, 97% of participants agreed or strongly agreed that the training content of the sessions was interesting and engaging – Over the 2.5 days of training, 93% of participants agreed or strongly agreed that the content was relevant and at the appropriate level

I look forward to working on my application with the things I have learnt from this module

European AIDS Treatment Group Newsletter - Issue 3 - 2014

6

TRAINING AND CAPACITY BUILDING ACTIVITIES

STEP-UP program: overview  Ambassadors of and for HIV communities across Europe and Central Asia  Learn, share, debate and implement positive change locally and nationally  5 training modules on HIV/HCV/TB treatment, care and prevention;  Going beyond ‘treatment only’ paradigm  19 participants from 15 countries  Mix group of HIV community/patient activists and junior healthcare

professionals

STEP-UP program: outcomes

 Introduced EACS Guidelines to medical students in Uzbekistan  Developed and Published Guide for Doctors and Community

Activists on Treatment Adherence in Belarus  Held two trainings for doctors working with prisoners in Kyrgyzstan  Organized conferenes on “HIV and Woman” and “Old AIDS - Young

HIV. National and European Prevention Policy”  Planned initiatives

- Research on pregnancy interruptions among HIV positive women in Russia - Conference “Old AIDS – Young HIV” in Berlin - Project on assessing nonmedical needs of recently diagnosed patients

STEP-UP program: in numbers

 5 modules  15 days of meetings  37 sessions and workshops  120 hours of learning, debating and questioning  385 hours of traveling (sometimes crossing 6

time zones just for a weekend)  1000 pages of printed materials  Endless networks, connections, friendships

and belief for being able to change situation for better.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

7

TRAINING AND CAPACITY BUILDING ACTIVITIES

STEP-UP: Feedback from Year 1 trainees

Tatyana Khan, International Treatment Preparedness Coalition East Europe and Central Asia

Q Now that you have completed the first edition of STEP-UP

Q Do programs like STEP-UP (where both medical and non-medical

program, what are the strongest parts of this initiative?

topics are discussed) bring added value to you? If yes, what are these values?

A The program gave me an excellent opportunity to improve my knowledge on HIV, TB and HCV treatment. The strongest part of this program is that it lays down the foundations for understanding the basics of treatment of HIV and related co-infections. Upon mastering the basics, the trainees can pick and choose the topics that they would like to research in-depth. An added value of the program is that in addition to contemporary treatment options, it keeps the trainees updated on what is in the pipeline and the future of treatment discourse.

Moreover, a unique and one of the strongest parts of the program is bridging East and West and finding common solutions to the problems of access and pricing issues that, at first, would require different responses given heterogeneous public health systems in the Western and Eastern Europe and Central Asia.

A The

program gave an opportunity to meet knowledgeable experts on the treatment of HIV and related co-infections as well as to get access to a plethora of scientific information. During the course of the project I got the idea to create materials on raising awareness and knowledge on HIV treatment. As a result, ITPCru designed the poster “ARV Drugs” on the basis of the existing materials on the topic. The poster has already been distributed among activists in 13 countries.

Q

Has the program made any changes in your professional development?

A No career promotions so far, but many things in the treatment discourse are so much easier to understand.

Talking to activists from other countries, I realized that all countries, rich or poor, go through more or less the same life-cycle in terms of access to treatment. And eventually, all of them have faced or will face the same obstacles. As such, the program gave me a great opportunity to share knowledge and best practices on the access to treatment, which is my professional area.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

8

TRAINING AND CAPACITY BUILDING ACTIVITIES

Christina Antoniadi,  Organization Against Drugs, Greece

Q Now that you have completed the first edition of STEP-UP people from other parts of Europe and establish a good working relationship with them. Besides that, I realised how much more I could learn through the Academy with regards to medical aspects of HIV and co-infections as well as clinical trials, research, ethics, surveys, politics, media relations, proposal writing, etc.

even in University. That became possible due to the excellent trainers that shared not only their knowledge but also their 20 or 30 years of experience in the field and encouraged us to do the same.

Moreover, I believe programs like STEP UP should be mandatory for healthcare professionals. The specific field training is extremely competitive and does not allow for team work or empathy. These are all aspects that can really influence a patient’s life, understanding, adherence, linkage to care and this training gave us the armoury to become more efficient for our patients.

Q Do programs like STEP-UP (where both medical and non-medical

Q

program, what are the strongest parts of this initiative?

A For me the strongest part of the initiative was the chance to meet

topics are discussed) bring any added value to you as a healthcare professional? If yes, what are these values?

A Even though I am not the average healthcare professional, since I also hold a Bachelor Degree in Communication and Public Relations and I am undergoing training to become a group psychoanalyst, I benefited largely from the program. I was able to interact with people living in better and worst conditions, compare healthcare systems and national health policies, learn things I was not taught

Has the program made any changes in your professional developments? If so, which?

A I come from a country, Greece, that hardly recognises any training other that the one implemented by the country’s universities.

Therefore, this training is not recognised by my organization, which is a state funded organization. Nevertheless, this training made it possible for me to become “visible” to the NGOs working in the field of HIV and Harm Reduction and I am really hopeful that we will be able to find a way to work together.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

9

TRAINING AND CAPACITY BUILDING ACTIVITIES

Julia Dragunova, International  Treatment Preparedness Coalition East Europe and Central Asia

Q

Now that you have completed the first edition of STEP-UP program, what are the strongest parts of this initiative?

A To my mind the strongest parts of this initiative are: 1. The window to Europe from the East and from Europe to the East – saying this I mean that it is unique thing to gather community representatives from the Western Europe and the Eastern Europe. When we had a possibility to share the experience that we had in access to treatment in our regions, the differences and the points where we can improve something. The STEP-UP management technically organized this possibility perfectly – by initiating the work in small groups, by providing constant translation and all meals during the days of trainings. We became friends and now have a possibility of permanent information exchange about all professional issues around all over the world when needed. It would be great to know more about the community in the States.

2. The sessions that were led by European professionals with a “first hand” information, f.e. about the HIV Cure, researches, about the latest and the most modern treatment for HIV, HEP C and TB, about the possibilities for the further advocacy. I found a lot of new knowledge about HIV, HEP C and TB from these sessions that I did not know before. I found inspiration after the sessions and actually spread this knowledge whenever is possible after – f.e.: conducted a women’s conference and worked the agenda of it, basing on the knowledge and inspiration that I got on STEP –UP programme.

forces, gave faith that you are strong and have enough capacity to make changes. STEP-UP management and trainers treated the participants with a big respect to the personalities and their cultural features, their views, treated everybody like a precious eaglets whom you preparing for a big fly. This STEP-UP program was not just a formality, the trainers and management really cared and believed in their participants, that they are worth of success. I still think I was very lucky to get to that program as I personally opened new sides in myself, that I did not see before.

Q Do programs like STEP-UP (where both medical and non-medical topics are discussed) bring any added value to you as a healthcare professional? If yes, what are these values?

A Yes, they did bring value: 1. I started to see new prospective in work. Initiated a creation of a new direction – for women affected by HIV. 2. I started to give more professional consultations – about issues related to the latest HIV, Hep C treatment, about HIV cure research works that are going on. About the role and possibilities of the community based organizations.

3. Attitude. The attitude that’s being transferred to all the participants from the STEP – UP management and from the trainers did a great thing – inspired and gave a lot of faith in your own

European AIDS Treatment Group Newsletter - Issue 3 - 2014

10

TRAINING AND CAPACITY BUILDING ACTIVITIES

2014 – 2015 EATG Training Academy STEP-UP The new cohort of trainees from 18 countries enrolled into the second edition of the STEP-UP Academy. Selected among more than 200 candidates who applied for the STEP-UP in 2014, these 21 young participants will be trained to become new generation of HIV activists in Europe and Central Asia.

The launch of the program took place at HIV 12 Congress held in Glasgow. During the first module, the trainees had a unique opportunity to meet leading scientists, doctors and community leaders who are engaged with HIV-related topics globally. Most of them had never attended the conferences of such scale or met with the representatives of the industry, governments or intergovernmental organizations. â–

European AIDS Treatment Group Newsletter - Issue 3 - 2014

11

TRAINING AND CAPACITY BUILDING ACTIVITIES 2014 – 2015 EATG Training Academy STEP-UP Please meet some of the current STEP-UP trainees. them. They were also available in coffee breaks and free time and ready to answer all questions we all had for them. My fellow trainees are group of young amazing and enthusiastic people that invest lots of their time and energy in making this world a better place to live. I learned so much from them and they all already influenced me in so many different levels. I see that until the end of the training we will be very good friends and colleagues.

Marija Kavic

Do you think that it’s a good idea to do such comprehensive trainings that go beyond “treatment only” approach?

Could you please briefly introduce yourself (name, country and experience in HIV sector)?

My name is Marija Kavic and I am from Croatia. All health care related to HIV/AIDS in Croatia is centralized in University hospital for infectious diseases “dr.Fran Mihaljević”, Zagreb, where I work for last four years. My primary job is to work in Voluntary counseling and HIV testing center bur regularly I come in contact with PLWH. Also I collaborate with two NGOs in Croatia: Croatian association for HIV and viral hepatitis and Iskorak - Center for sexual and gender minorities.

Why did you decide to apply for STEP-UP? I have always been the person who was eager to know more about things I am interested and I have never missed opportunity to do so. I decided to apply for STEP-UP Academy because I saw it as unique opportunity to improve my knowledge related to HIV/AIDS, co-infections etc. but also to meet people who have same goal as I have and that is - creating better world for PLWH. What was the most unexpected thing that you observed about STEP-UP so far?

Before applying for STEP-UP I have never really heard about the EATG and expected to hear about relevant and new information’s about HIV/AIDS and related topics. But now I have feeling that beside all this information’s I got so much more. The most unexpected thing was surge of positive energy and confidence about all things I can do in the future alone but also via collaborating with people not only in Croatia but with all those amazing people that I met.

How would you describe the cohort of your fellow trainees and the trainers?

There is only one word that can describe all of them: amazing!!

Trainers are experienced professionals who are approachable, open, positive and I really enjoyed time spent in “classroom” listening to

I think that there should be more trainings like this because knowing “only” medical information’s about HIV/AIDS does not allow you to make an influence on reducing stigma and discrimination or to change national politics. On the other hand if you are “only” confident and ongoing and you don’t have relevant medical information’s - you will be in the same trouble. Trainings like these can give you perspective about what is happening all around the world, you can hear experiences of experts about what they did in their countries to make a difference, you can receive relevant medical information and receive support from people with which you share same goals. And really it is great experience to share same goals with such amazing people.

Did attending HIV 12 Congress bring you additional benefit?

HIV Drug Therapy Congress was the first international congress I have attended. I felt really confident to carefully choose lectures I am interested in but also to spend time in approaching and talking to people which may help me in my future work. That experience is priceless because I had opportunity to listen to lecturers from all around of the world but also to approach them and talk to them. Also I had opportunity to talk with representatives of different pharmaceutical companies and representatives of nongovernmental sector. They all were really friendly and ready to answer the questions and to give guidance for my projects and ideas. After the Congress I felt really empowered to do similar things again in Croatia but also to apply for other international conferences.

Any other comment?

Once again I would like to say how privileged I feel to be the part of this training. Thank you so much on this great opportunity!! I already feel that all of you, trainers and trainees, have influence on my life and I look forward to see you again and to learn more from all of you.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

12

TRAINING AND CAPACITY BUILDING ACTIVITIES

and sometimes rather different issues concerning HIV in general and treatment in specific. This selection made it possible for us to understand the situation in different countries and learn from each others experiences. I can say that all trainees not only wanted to but needed to learn as much as possible and that made it very interesting and productive.

Viken Darakjian

Armenia is the restrictive ARV treatment regiments, HCV medication being expensive and adherence issues together with unhealthy lifestyles. A colleague of mine has participated in the previous year training and i can honestly say i was very impressed with the information that she came back with after graduation. I consider myself a person who has big ambitions and big need to help and assist others and I was confident that only STEP-UP would assist me in my mission.

What was the most unexpected thing that you observed about STEP-UP so far?

I have participated in several non HIV related seminar training in the past however what made STEP-UP very unique and unexpected in a way, as a training, is the fact that our motivation to learn was constantly enhanced by making the learning part interesting and fun.

Learning is not just a matter of storing information, it is about being able to apply what has been learned not just to familiar situations but also to new ones. The chosen teaching methods made sure that we fully understood what was being taught, through the case studies that we had to engage in.

The amount of feedback given from the trainers was so excessive, that in most cases we had the answers to some of our questions without even having to ask them. We were constantly encouraged to learn from each other by talking to each other and through the joint tasks.

How would you describe the cohort of your fellow trainees and the trainers?

I must say that during the first day when we were supposed to introduce ourselves I was feeling rather “stressed” however soon after we started i realized that there was no need for such stress. The high amount of respect that the air was filled with by both trainers and trainees since the beginning made the entire experience very pleasant. The selection of the trainees cohort was done in a very professional way bringing together people from different countries with different backgrounds and professions sharing very similar

As for the trainers, I have participated in many non HIV related seminars and training in previous years , and i can honestly say that I have never enjoyed and learned as much as I did during this first module. The trainers were very confident and up to date with their knowledge, they showed respect to all of the trainees opinions and questions making us and our ideas/questions feel very important.

No questions were left unanswered and regardless of the time and place, even outside of official training hours, they were ready to answer any questions that we had.

Do you think that it’s a good idea to do such comprehensive trainings that go beyond “treatment only” approach?

I completely agree with the training to go beyond the “treatment only” approach due to the simple fact that PLWHIV face so many different obstacles on so many different levels in day to day life.

Treatment is the most important factor in making PLWHIV live a near normal and healthy lives however we must not forget the psychological issues, stigmatization, discrimination, disclosure of their status and the human rights issue that play a similar important role.

Did attending HIV 12 Congress bring you additional benefit?

First of all i would like to thank EATG for giving us this great opportunity to participate in this conference. Being a person living with HIV for the past 3 years and not being on ARV treatment yet it was very interesting for me to see the recent progress in the research and treatment affecting the management of HIV infection. Not being a doctor myself, I still learned a great deal from all the practical advice and guidance that was provided in the day-to-day treatment of PLWHIV. Being able to see all the different abstract posters from all around the world and to get the chance to meet and discuss those posters with the people who have prepared them was a great opportunity to learn from.

I had the opportunity to meet with doctors and pharmaceutical companies and discuss few issues that are relevant to HIV and HCV treatments and the availability of those drugs in Armenia.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

13

TRAINING AND CAPACITY BUILDING ACTIVITIES

...

I had the chance to interact with many european organizations and exchange ideas specially regarding the european HIV testing week and registered my organization that i work with for the testing week.

On a private level, I accidentally came across two representatives from Qatar, and was good to finally be able to discuss the situation of PLWHIV in their country by telling them my story.

Any other comment?

proper counseling after such a long trip. I must say participating in the training and the conference filled me up with so much courage that I even surprised myself when I told the old man not to worry as I am HIV+ as well and it is not considered a death sentence anymore.

I must add the fact that he is the only stranger in Armenia to whom i disclosed my HIV status. I took his sons phone number and we have met once already. There is much work to be done with his son but I will be there to make sure everything will turn out just great.

After almost a 22 hour trip back to Yerevan I took a taxi to my house.

The taxi driver kept on trying to start a conversation with me however my answers were very short since I was very tired. Half way through the ride he asked me where I was coming from and what I was doing there. When I said Scotland and HIV related training and conference his eyes filled with tears. To my surprise he confessed that his son has HIV since many years now and has been going through self stigmatization. Of course the first question he asked was whether they found the cure. I am proud of myself for being able to give Natasha Khilko, NGO “EVA”

Could you please briefly introduce yourself (name, country and experience in HIV sector).

How would you describe the cohort of your fellow trainees and the trainers?

My name is Natalia Khilko and I’m from Russian Federation. I was a volunteer for a few years, from December 2013 I have full time work as a project manager in non-government organization, who help HIV-positive women and their families.

20 very active, clever, different, people with the heart in right place + 4 awesome experts in HIV field = the very helpful time together Did you think that it’s a good idea to do such comprehensive trainings that go beyond “treatment only” approach?

Why did you decide to apply for STEP-UP? I think it is the wonderful idea.

I want to know the latest information about HIV and comorbidities, I want to know how people work with HIV in other countries, I want to know these people – I think it is very important to be up to date and to feel that HIV – it is our common problem, and together we can find new ways for changing situation in our countries.

What was the most unexpected thing that you observed about STEP-UP so far?

Did attending HIV 12 Congress bring you additional benefit?

To be honest, it was not so easy to understand so many specific information. I was concentrate on all themes about Eastern Europe and Central Asia and women issues – I visited such sessions and saw some posters, met my colleagues from different countries and got acquainted with new people.

I thought it will be like school – a lot of theory and a bit practice, but we had enough cases and they was not easy.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

14

TRAINING AND CAPACITY BUILDING ACTIVITIES

My name is Paolo Gorgoni, I live in Bologna, Italy, where I work as a volunteer for Plus Onlus, a community-based network of LGBT people living with HIV. What we do is mostly information, prevention and peer counselling (both vis-à-vis and through our helpline). We are also going to open a Checkpoint, the first one in Italy, where free HIV testing and counselling will be provided by peer operators.

When I decided to apply for STEP-UP I was feeling the need of a deeper knowledge and a higher specific education about HIV issues, not only in my country, but also around Europe and Asia. Also, I wanted to create a network with colleagues involved in the same field in other countries, in order to have ideas and projects to share and to build a powerful group of young activists coping with HIV, stigma, access to treatment and any other possible related issue.

Something unexpected happened in the first module of STEP-UP, though: I was surrounded by such brilliant colleagues and trainees, a bunch of amazing people who encouraged me and shared with me knowledge and information, but also doubts and concerns, emotions and personal stories. It happened rather immediately, even though we didn’t know each other before. I suddenly felt part of a big powerful community and I realized that we can make things get better for real.

The differences of our backgrounds made me feel a little bit uncomfortable at the beginning, due to my personal lack of a scientific/medical background, which appeared to be extremely useful, instead, since we worked a lot on drugs, interactions, drug-resistance, possible combinations. Soon I realized that this is a part of what we are meant to do, that I had to take this chance to learn as much as I could, and that my communication skills, my

Paolo Gorgoni 

capacity to use my personal experience as a tool for a deeper connection with the others, my strong stage attitude were also important features for my work and could enrich the group, being complementary with the others’ abilities. I appreciated the trainers very much, because they have been nice, professional, rather informal and really patient, especially when it came to explaining something difficult for the second or third time to make sure we could understand perfectly.

I especially appreciated the programme, which goes beyond the “treatment only” approach in order to let us improve all of the skills and capacities we need to work better and empower our local communities. Attending HIV 12 congress also added benefits: it has been inspirational to me, it gave me the idea of what my future may look like as an activist, it gave me the opportunity to meet people and expand my network and, last but not the least, it gave me the chance to collect up-to-date information not only about HIV, but also about HCV issues in many countries.

In general, as a personal additional comment, I would like to express my appreciation for the workshops on case studies. I think they are really helpful and a good source of group work and reflection about medical and human issues at the same time, I am sure this will help me significantly in my future work. I am grateful for this incredible chance I have been given. - Paolo

Access, Services, Knowledge (ASK): Integrated Approaches to the Treatment of HIV/AIDS and Related Co-infections in East Europe and Central Asia During December 2014-November 2015, EATG, in collaboration with ITPCru, is running the project ASK: Access, Services, Knowledge.

The project comprises of two trainings and a series of post-training follow up activities on the treatment literacy of HIV and related co-infections. Targeted for those working with people who inject drugs, healthcare professionals and counsellors in East Europe and Central Asia, two trainings will take place in December 2014 (in Baku, Azerbaijan) and in June 2015 (in St. Petersburg, Russia). EATG recruited 35 trainees to attend these two trainings. We will be posting regular updates on the outcomes and impact of the project. Stay tuned for more information!

European AIDS Treatment Group Newsletter - Issue 3 - 2014

15

TRAINING AND CAPACITY BUILDING ACTIVITIES Increasing Capacities, Achieving Novelty (iCAN): Pan-European Conference on Community Involvement and Sustainable Respond to HIV/AIDS In collaboration with partner organizations, EATG organized a conference on the history and capacities of HIV communities across Europe. This two-day conference was held in Warsaw and brought close to 100 participants from over 25 countries to learn, share, present and discuss best practices of community engagement and mobilization in the current HIV discourse.

The conference consisted of 6 workshops that looked at scientific, political, educational and training capacities of people who work with HIV/AIDS. While the final report is being finalized, below are some comments from the participants of the conference.

Was it necessary to have this conference? If so, what were the strongest parts of the iCAN conference?

What this conference clarified for me was that even though we all work in the field of HIV/AIDS either as professionals or activists, we don’t seem to be on the same page. Each person prioritizes due to the needs and policies of their own country. Moreover, not all of us know the latest developments. This conference focused on human interaction and sharing and not on medical advances. Therefore, it was made possible for people to come together from different parts of Europe, share their experiences and learn based on other people’s experience, practices, etc. It was a very “hands on” approach that helped on the practical aspects of working in the HIV field.

Furthermore, the sharing of best practices and debate amongst the participants during workshops made possible for all this knowledge to “stick” and prepared us for the challenges during implementation.

What are the main key learning lessons that you derive from the iCAN? • Not all activists and professionals have the same priorities or believe in the same approaches but a diverse group coming together for a conference can provide significant insight on other ways to approach each situation/challenge/problem.

• Two minds always think better that one. Three minds think better that two. Imagine what happens with 100!!!

• East Europe is still facing very vital challenges regarding ARV therapy and therefore cannot even discuss issues like PreP • There are large unidentified populations in Europe with HIV and co-infections • Checkpoints have made a real difference in approaching and screening hard to reach populations

European AIDS Treatment Group Newsletter - Issue 3 - 2014

16

TRAINING AND CAPACITY BUILDING ACTIVITIES “ Old AIDS – Young HIV. National and European Prevention-policy“ (6-9 November 2014, Berlin, Germany) HIV/AIDS This conference was supported by EATG and held at the KonradAdenauer-Stiftung - German Christian-conservative foundation supporting related parties. While admittedly the issues of HIV/ AIDS, diversity and homosexuality may not be the easiest to discuss within the scope of the Foundation’s work that usually supports political education, peace, freedom and justice via its national and international programs, they were nevertheless very important ones.

For me, as a scholar of this foundation and an HIV-positive person, I felt the need to change something within the old-fashioned models of thinking and living, which are taught by Konrad-AdenauerStiftung. I was willing to build up capacities and multiplications for HIV-issues.

Overall the conference was successful as most of its participants began think differently about HIV and related topics after attending the event. The conference brought together students of very different disciplines. There were medicine, law, social-work, gender studies and a lot of other subjects for an intensive 4 day conference that covered the following topics: 1.

2.

3.

4.

5.

6.

7.

for a decline. We spoke about social taboos, sexuality, queer living conditions and how to prevent HIV infections. We tried to sensitize them for the needs of PLWHIV and for that we need confrontation and communication that they can understand, that they are willing to support. Finally they were confronted with four PLWHIV and had the chance to ask them about their life, their future, fear and needs.

Most participants came with nothing and left with the competence to deal with PLWHIV in a very good, natural way and a much higher level of tolerance and understanding about diverse philosophies of life. I truly believe that this amazing group of co-scholars can and will do their best with the new information and input they got to improve the situation of PLWHIV in their country, in their environment and within their companies. We need young, intelligent people to spread our opinions, ideas and beliefs. We found some.

Medical basics, PEP, PrEP, TasP, cure: Siegi Schwarze Public AIDS/HIV-organizations, prevention work and stigma: Jochen Kleres, GCGD German gay and AIDS-activism from the beginning till today: plenum with the contemporary witnesses Ulli Würdemann, Act Up; Rainer Schilling, Deutsche AIDS-Hilfe HIV-epidemic in Eastern Europe: Svilen Konov German health care in the age of migration: Sergiu Grimalschi, Berliner AIDS-Hilfe Ethical issues and therapy; what’s the responsibility of Germany and the EU in the context of „Health for all“? Dr. Dr. Stephan Dressler Colloquium with PLWHIV and HIV-specialists

We reached our aim at qualifying the students to act as multiplicators.

All of them are very successful in their branches, and they are supposed to be the next generation of decision makers in Germany and also in international contexts. It is rare that we can reach a group of people that is not involved with HIV-issues yet. So during this conference we had an excellent chance to build capacities for our beliefs and values in a group which is highly qualified but conservative and not a part of the PLWHIV-community. The participants were confronted with rough facts about HIV, especially about what is going on in Eastern Europe and why the epidemic is rising despite the global tendency

European AIDS Treatment Group Newsletter - Issue 3 - 2014

17

TRAINING AND CAPACITY BUILDING ACTIVITIES

A Snapshot of EATG Training and Capacity Building Activities

2012-2014 EATG Training and Capacity Building Activities

5 training events 17 post-training projects

35 countries 110 trainees (community activists and healthcare professionals) 2000 beneficiaries 150.000 € investment

• • • • •

Shaping standards of treatment in Central Asia Raising HIV literacy among female prisoners in Russia Creating comfort zone for young people to disclose their status Supporting communities on HIV prevention among MSM Updating on existing and best treatment of HIV and related co-infections

European AIDS Treatment Group Newsletter - Issue 3 - 2014

18

ECAB AND SCIENTIFIC ACTIVITIES

Twenty-two ECAB members and community delegates attended the third and last HIV ECAB of 2014 (Octobers 17th-19th) in Brussels.

During the three-day meeting the members met with Gilead, ViiV Healthcare, Merck Sharp and Dome to discuss about clinical development and innovation. Access was brought on the agenda, as for few of the low-middle countries in the WHO region, access to key HIV drugs is still not fully in place.

For the first time the ECAB hosted representatives from Sandoz, a generic pharmaceutical division of Novartis, to discuss how expanding to the generic market could increase the options of treatments for people living with HIV in different European settings.

On Sunday October 19th Barbara Ensoli, from the Italian National Institute of Health, presented the outcomes of the ongoing trial of the TAT-protein vaccine. The research showed that the TAT vaccine has some potential for therapeutic immunization by reducing immune activation and improving immune function in subjects on HAART. Steps- A community initiative to design the pathway to a long-term remission of HIV infection

On November 1st, one day before the HIV Drug Therapy meeting in Glasgow, a community initiative was organized and chaired by Giulio Maria Corbelli (ECAB Chair) at the Scottish Exhibition and Conference Centre (SECC).

The meeting brought together representatives of the international HIV community network, to discuss potential scenarios, including expectations and needs of people living with HIV in relation to a possible cure or strategies to control the HIV infection in the longterm.

The first part of the meeting included presentations on the research on long-term drug-free remission of HIV (Veronica Miller - Forum for HIV Collaborative Research), the identification of mechanisms of the immune system for the eradication of HIV (Giulia Marchetti University of Milan, Italy), treatment interruptions in the clinical practice (Cristina Mussini, University of Modena, Italy), and methods to measure latency and target reservoirs (Hans-Jürgen Stellbrink, Infectious Disease Medical Center Hamburg, Germany). Giulio Maria Corbelli presented and overview of the research and trails ongoing all over Europe (Giulio Maria Corbelli) During the second part of the meeting Brian West and Damian Kelly chaired the discussion on the feelings of the community about the possibility of a total remission from the HIV infection. The participants were asked what will be the expectations and concerns once a “cure programme” will be finally available, including aspects such as risktaking, pricing and reinfection.

At the end of the meeting it was agreed that the EATG should reinforce the collaboration with other HIV patient groups to guarantee that the community is represented in the debate on the HIV cure and its related topics. For this reason a number of participants decided to join the ECAB mailing list on the cure to further the discussion after the meeting.

You can find more information about the Steps event in the editorial section.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

19

ECAB AND SCIENTIFIC ACTIVITIES SITGES VII: FROM THE PIPELINE TO REAL LIFE...

The seventh international workshop on viral hepatitis, aka Sitges VII organised by EATG, 3-5 October 2014, Sitges, Barcelona.

Chris Ward EATG Hepatitis Coordinator, chris.ward@eatg.org

2014 saw unprecedented convergence of science and policy issues in EATG hepatitis advocacy. The seventh international workshop on viral hepatitis, aka Sitges VII brought together people living with hepatitis C, scientists, doctors, regulators, advocates and representatives of pharmaceutical industry to engage in a dialogue concerning new treatments for hepatitis C. Sitges VII was a workshop of ‘firsts’… For the first time, EATG warmly welcomed Fiona Godfrey, Director of Public Affairs for the European Association for the Study of Liver diseases (EASL) to experience the advocacy efforts of a charity not only concerned with liver disease but concerned with access to the best, most effective treatments for HIV and related co-infections. A new format for the panel discussions ensured that people living with hepatitis C and their allies, were the central focus and leaders of the dialogue throughout, whilst allowing ample space for input from other stakeholders.

Sitges VII was also the first international viral hepatitis workshop to be developed by the Hepatitis Steering Committee, composed

internally of David Ananiashvili, Aisuluu Bolotbaeva, Diego Garcia and Maxime Journiac from Georgia, Kyrgyzstan, Spain and France respectively. The Hepatitis Steering Committee was established in March to oversee and advise the EATG hepatitis portfolio, and greatly benefits from the combination of perspectives and experience from East and West.

The internal briefing session held on Day 1 incorporated first and foremost a frank, open and thorough evaluation of the Sitges project, presented by Svilen Konov, former EATG Hepatitis Consultant.

Delegates then received a hepatitis C drug development pipeline update from Tracy Swan, followed by an update on hepatitis treatment Access & Advocacy as developed by EATG Company Liaison (Access, Gilead) Deniz Uyanik and Chris Ward, current EATG Hepatitis Coordinator. Feedback concerning the internal briefing from individual delegates has been highly positive thus far.

The Sitges VII workshop bridged policy and scientific dialogues...

The morning session of Day 2 focused on clinical themes. Sanjay Bhagani and Claire Thorne gave two outstanding presentations concerning ‘Questions remaining in HCV research’ and paediatric clinical trials in Eastern Europe respectively. As per tradition, Filip Josephson (European Medicines Agency) presented his personal perspectives as a regulator involved in hepatitis C therapy approval.

A panel discussion entitled ‘Clinical barriers in achieving hepatitis C elimination’ permitted further exploration of the clinical themes and perspectives.

Day 2 afternoon session: delegates heard testimony from Dima Sheremby, Chair of Patients in Ukraine/Ukraine Community Advisory Board, Luis Mendao (GAT/EATG), and Pauline Londeix (ITPC Middle East, North Africa) make their cases for price reductions and other means of increasing not only WHO European but global access to the best, most effective hepatitis C treatments. A panel discussion entitled ‘From the pipeline to real life: how can we increase access in the real life context?’ moderated by Tracy Swan & Chris Ward gave space for further exploration of the themes highlighted by the three esteemed global advocates.

European AIDS Treatment Group Newsletter - Issue 3 - 2014

20

ECAB AND SCIENTIFIC ACTIVITIES

...

The last day involved a community session wherein the now public Sitges VII Declaration ( http://www.eatg.org/gallery/171311/ Sitges%20VII%20Declaration.pdf ) was outlined by consensus, pending an extended period of consultation with EATG Policy decision-makers and the Board of Directors. The community of people living with hepatitis C and their allies then met with representatives of pharmaceutical industry in order to discuss potential steps forward.

Hepatitis advocacy is clearly a point of convergence for both clinical and access issues. In any context where people in need of treatment as cure for chronic viral infections are denied access, either due to pricing, payer issues, or lack of commitment from health systems and governments; dialogue from all sides of the debate is expected to be impassioned and constructively adversarial. Without this dialogue between all stakeholders, partnerships and potential solutions can never develop. EATG therefore thanks its members and esteemed guests from pharmaceutical industry and elsewhere who were able to join the dialogue at Sitges VII. A full meeting report covering the entirety of the Sitges VII workshop, authored by EATG DirectorSecretary Tamas Bereckzy is expected in early December 2014 and will be made public thereafter.

For further enquiries about the Sitges project, please contact Chris Ward, EATG Hepatitis Coordinator at chris.ward@eatg.org.

Calendar ECAB meetings 2015 January 23-25 EATG/AVAC Meeting on Prevention Brussels(Belgium)

March 20-22 E CAB HIV Brussels(Belgium

May 22-24 ECAB HCV Budapest (Hungary)

October 2-4 Sitges VIII Meeting on HCV Sitges (Spain)

Please contact Giorgio Barbareschi, EATG Scientific Officer, for further information on ECAB activities or on the projects. giorgio.barbareschi@eatg.org

November 6-8 ECAB HIV Brussels(Belgium)

December 4-6 ECAB HCV Brussels(Belgium)

European AIDS Treatment Group Newsletter - Issue 3 - 2014

21

EATG Permanent Representations and Partnerships AIDS Action Europe • AIDSMAP.com • CHAARM steering committee • COBATEST • Collaboration of Observational HIV Epidemiological Research in Europe - COHERE • Correlation Network • Civil Society Forum on HIV • Civil Society Forum on Drugs • Drug interactions website • EACS guidelines • ECRAN • EMA - Patient & Consumer Working Party • EMA - Pediatric Committee (PedCo) • EMA management board • ENCePP Steering Committee • EPF Board of Directors • EPHA Board of Directors • Epposi • EUPATI • EuroCoord - Collaboration of Observational HIV Epidemiological Research in Europe • European Harm Reduction Network • European HIV Resistance Network • European Workshop on HIV & Hepatitis Treatment Strategies & Antiviral Drug Resistance • Forum for Collaborative HIV Research • Glasgow HIV 2014 (HIV 12) • Global Fund • GNP+ • HAART Oversight Committee (D:A:D study) • HIVERA • HPYP (Health Promotion for Young Prisoners) • IQ-HIV • NEAT • PARTNER Study executive committee • Pediatric European Network for Treatment of AIDS (PENTA) • IPPF Europe • PROTECT External Advisory Board (EMA) • Quality Action • STOP TB Partnership • TB Europe Coalition (TBEC) • UNAIDS PCB • WHO Europe • WHO Civil Society Reference Group on HIV

EATG funders AbbVie • AIDS 2014 Conference • aMASE • Bristol-Myers Squibb • European Commission • Janssen • Gilead • HIV in Europe • Merck • Positive Action • Sidaction • Swim for Life • Viiv Healthcare