eatg newsletter 01 april 2014

NewsletterSpring Issue 1 - 2014

Contact

EATG SecretariatPlace Raymond Blyckaerts, 13 B-1050 Brussels, Belgium [email protected]

Tel. +3226269640Fax. +32 2 644 33 07

EATG is a community organisation that promotes the interests of people living with HIV/AIDS. 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 infection, and to improve the quality of life of people living with HIV/AIDS in Europe.

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2013-2014 EATG Training Academy STEP-UP

InterviewTrainees of the EATG

COPE 2014

Scientific Activities

EATG Finances Online

Policy Working Group

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2013-2014 EATG Training Academy STEP-UP ................................................................................................................... 1

Interview ........................................................................................................................................................................................................................................ 2Trainees of the EATG

COPE 2014 ................................................................................................................................................................................................................................... 3

Scientific Activities ........................................................................................................................................................................................................ 4

EATG Finances Online ............................................................................................................................................................................................... 5

Policy Working Group .............................................................................................................................................................................................. 6

Editorial teamRuben AlonsoGiorgio BarbareschiKoen BlockAnn-Isabelle von LingenOleksandr MartynenkoMarie McLeodBrian West

DesignAltitude

PicturesEATGwww.shutterstock.com

European AIDS Treatment Group Newsletter - Issue 1 - 2014 2

Welcome to this latest issue of the EATG newsletter. The EATG now has 125 members and I would really like to extend a welcome to those new members who have recently joined the organisation.

Looking through this issue, it is great to see the testimonials from some of the participants of the EATG Training Academy STEP-UP in this issue. It is fantastic to see us engaging with – and training - a new generation of HIV activists. Also fantastic to know that we will be repeating this initiative this year – with a new intake starting just before the Glasgow HIV conference in November. Many thanks go to the HIV Drug Therapy Glasgow 2014 organising committee for giving us registrations that will enable this group of trainees to attend the conference. If anybody out there is still interested in applying for the next STEP-UP Training Academy course, then contact Oleksandr ASAP.

The EATG was a very strong supporter of the European HIV Testing Week 22-29 November, which is coordinated by the HIV in Europe Initiative. I was really pleased to see that this initiative was so successful in its’ first year - the evaluation clearly helping to decide that this initiative would continue. Plans are being made now for HIV Testing Week 2014 at the end of November.

Scientifically I know that the work going on with EUPATI has really stepped up a gear, and I am glad we are providing a key input into the training modules for this project. I am also personally involved in the European Communication on Research Awareness (ECRAN) consortium which will be holding a project meeting in Luxembourg on the 21st of May this year. You can read more about this further down in the newsletter.

In the field of hepatitis C, I know that the new Hepatitis co-ordinator, Chris Ward has really settled into the post – and is doing a great job. But access to these drugs for the majority of people will be impossible if the costs remain at their present level. The EATG produced a couple of press releases at the recent EASL meeting in London that highlighted the shocking prices that are being charged for these new drugs. This will I think be one of the key areas of our work in the scientific field this coming year – lobbying and advocating for affordable Hep C drugs. Great new oral regimes are of course brilliant – but not if only the richest 5% of the population can afford them.

Yours,

Brian West

Editorial

by Brian WestChair of the Board of Directors


On 24-26 January 2014, EATG organized the second module of EATG Training Academy STEP-UP. Following the discussion started during the first module in Brussels, the January module in Kyiv provided an update on recent developments on the HCV and TB treatments in pipeline. The trainees learnt about drug-drug interaction, the issues around HIV and sexual health and were introduced to the topics of clinical trials and protocols in the current HIV discourse. Of particular interest was the interactive ‘question-and-answer’ session on drug resistance. Originally scheduled to last for 45 minutes, the session resulted in a 90-minute dialogue between the trainers and the trainees who presented the cases studies from their practice. The trainees highly remarked this opportunity to address the unresolved treatment-related inquiries of their clients.

The topic of HIV and pregnancy raised a lot of questions, particularly among the trainees from the former USSR countries. As the session on the neonatal care for newly born babies indicated, there persists a lack of knowledge and an array of misconceptions on the contemporary approaches to the standards of care for babies who are born to mothers injecting drugs.

The training concluded with the introductory session on stigma and discrimination, whereby the trainees were grouped in mixed country sets and given to debate the case of HIV and possible discrimination in a health institution. This particular session gave a sneak preview of the topics that will be addressed during the upcoming modules.

Overall module 2 of the STEP-UP programme received positive participant feedback:• 100% agreed or strongly agreed that, over the 2.5 days of

training, the content of the sessions was relevant and appropriate • More than 90% agreed or strongly agreed that the content was

relevant and at the appropriate level over the 2.5 day training sessions

• 100% found that the trainers answered their questions effectively

• 90% thought the trainers were interactive and engaging

The following improvements were made in participants’ knowledge:• 100% felt that their knowledge of HCV and TB treatment for HIV

positive patients improved• 100% felt their knowledge of HIV in pregnancy had improved• 100% felt their knowledge of drug resistance had improved• 95% felt their knowledge of clinical trials and protocols had

improved• 90% felt their knowledge of drug names and classifications had

improved• 85% felt that their knowledge of stigma and discrimination had

improved

The materials of both modules are available in English and Russian at http://eatgtrainingacademy.org/training-centre/training-modules

2013-2014 EATG TRAINING ACADEMY STEP-UP

Capacity Building


Interview with ChristinaQ: Could you please briefly in-troduce yourself (name, country and experience with HIV-related topics)?A: My name is Christina Antoniadi, I am Greek/Cypriot living and working in Athens, Greece. I always had a special interest in HIV and was already volunteering at the Center of Life, an NGO for people living with HIV/AIDS in Greece. In January 2013, I started working as a nurse at

OKANA (Organization Against Drugs) and became further involved as it became clear to me that the economic recession brought about many issues that were not present before. Amongst them a huge stigmatization of seropositive drug users, a huge rise in new infections amongst drug users as well as the general population and a demise of any rights or welfare benefits for people living with HIV that almost takes away their dignity and access to treatment.

Q: Why did you decide to apply to become a STEP-UP programme participant?A: I realised that I wanted to get further involved in HIV advocacy and I was looking for a way to do that, so when I got the e-mail about STEP-UP I decided to apply. I never could have imagined the knowledge I would be introduced to, since I was always interested in the subject and my studies were in a familiar field (nursing). I am so grateful that I was wrong!

Q: What was the most unexpected thing you have observed from being involved in the STEP-UP programme so far?A: During Module 1 I was introduced to people from other European and Central Asian countries and learned how HIV patients are treated there, if there is access to treatment or if welfare benefits are offered. This experience was, to say the least, overwhelming! It made me appreciate the current status in Greece, it gave me ideas on how we should proceed and it clarified the issues we will be dealing with in the next few years. The EACS Conference supplied me with scientific evidence that made my beliefs stronger. The most important things I learned at the conference?...- If an HIV patient is receiving HAART or ART and has an

undetectable viral load, the chances of transmitting the virus are very slim (approaching zero)

- Ignorance amongst medical and paramedical staff is still the biggest problem when it comes to HIV

- Tuberculosis and Syphilis are making a comeback causing serious problems to seropositives if untreated

- HIV positive drug users cost much more to the public health systems in hospital attendance and hospitalisations if they don’t get access to HIV treatment and harm reduction means or substitution therapy

- New illicit drugs or new patterns of use of already existing illicit drugs can change dramatically the transmission of HIV amongst drug users

- Very strict legislation about the transmission of HIV only increases the stigma and intolerance without actually providing protection

During Module 2, I was amazed that our trainers had included key information covered in the EACS conference in our training. I remember that the day we had a session covering soon-to-be launched drugs, that very drug was launched in Greece. How much more up to date training is there than that??? Also, during our stay in Kyiv, I approached one of our trainers, Damian Kelly, about a patient back home that troubled me and didn’t have any clue how to handle him. He was very helpful providing me with paradigms from his job and the way he had handled similar situations. To me, getting insight from such an experienced professional was invaluable.

Q: How would you describe the cohort of your fellow trainees and the trainers?A: Amazing!!! I am very much impressed by the selection of trainees and words are not enough to describe our trainers! We are a fantastic group of people that came together, thanks to Oleksandr Martynenko, only to enrich each other’s lives. Each of my fellow trainees has something to offer in a different field of expertise that only provides us with more in-depth knowledge. As for the trainers, they are extremely talented in presenting their subjects in a way everyone can understand, no matter what their background is. Also they have excellent knowledge in their fields of expertise, they are very much approachable, allowing us to ask about whatever we don’t understand and even advise if asked to!!! Q: How do projects like STEP-UP bring added value to conferences and other training programmes in the field of HIV treatment, care and prevention?A: This is my first training on HIV other than a presentation I watched whilst attending Middlesex University (UK) as part of an Erasmus – Socrates student exchange programme. I feel very blessed to participate in STEP-UP as I am constantly learning new things. I believe that such projects do provide added value to existing conferences/training because they take into consideration other factors as well, besides just medical aspects of the subject. ➜

In this edition, we would like to introduce to you some of the current trainees of the EATG Training Academy STEP-UP.


Q: What are the strongest and weakest things about the Training Academy?A: The strongest thing about the academy is Oleksandr Martynenko because he made an incredible choice of trainees and arranges everything to the detail. Also, we are provided with excellent trainers that make our time and effort worthwhile! The weakest thing about the academy is that it is very hard work and I always end up needing some time out afterwards!

Q: Do you think that EATG is the right organisation to carry out such projects? If yes, why?A: I am very impressed with the organisation of the STEP-UP programme: from the information sent to us regarding our flights, the itineraries, the advice on how to get to the hotels, the folders and materials provided, to the creation of the website so that we can access all presentations and information from previous modules. I have a constant feeling that I am being taken care of - that is priceless. As to the education I am receiving, I have to admit that it is extremely accurate, it provides insights on all new developments and in comparison to the training I received at University it is much more to the point, provided without stigmatisation and as I mentioned before, it includes information on all new developments of the field.

Q: What would be your advice to other prospective applicants?A: Apply now!!! It’s a life-changing experience you want to have!!!

Q: Why do you think that focusing on a wide range of topics, not just the ‘treatment paradigm’, is important in the STEP-UP programme and for treatment activism in general in Europe and Central Asia? A: I believe that medical facts are the way to go in order to diminish stigma and isolation, but it is necessary to go beyond treatment in order to be effective in standing up for the rights of HIV positive people. The rights violations don’t stop with access to treatment, even though it’s of grave importance. That’s why I am very excited for the modules to come that take into consideration other needs of activists and will help us to develop skills that will be needed in our interaction as professionals too.

Q: Any other comments?A: Thank you so much for selecting me to participate in this training project!!! It has changed my life. It made me far more optimistic and confident especially about human relations and interactions. It provides me with a sense of purpose that can bring together a group of people and make them work together; that has become so rare to come across. I feel blessed. ■

Interview with KarlQ: Could you please briefly introduce yourself (name, country and experience with HIV-related topics)?A: Karl Robertson, UK (Edinburgh, Scotland). Currently volunteer a few hours a week for a gay men’s charity which can deal with HIV +ve men

Q: Why did you decide to apply to become a trainee for the Training Academy?A: I had only been a volunteer for about a year when one of the staff at the charity mentioned the academy to me and thought I’d suit it. Coupled with wanting to know more about how HIV is treated/handled in other countries, it made sense to apply.

Q: What was the most peculiar/interesting thing that you ob-served during Modules 1 and 2 and/or during EACS confer-ence?A: The different stories from European countries and Asian coun-tries alike. I knew I was lucky to live in the UK with it’s fantastic health service but I never knew just quite how lucky.

Q: How would you describe the cohort of your fellow trainees and the trainers?A: Within a day of seminars we were friends. The common cause and mindset brought us together really quickly both trainee and trainer alike. I enjoyed the informal chats with a trainer from Germa-ny as much as a trainee from Kazakhstan.

Q: Do you think that such projects as the Training Academy bring added value to already existing projects on HIV treat-ment, care and prevention?A: Definitely. Getting different perspectives on these issues from other regions is vital. There may be an accepted medical treatment for something which may not be available or viable in some coun-tries and exploring the reason behind this is very important.

Q: What are the strongest and weakest things about the Train-ing Academy?A: Strongest: the bringing together of so much knowledge and ex-perienceWeakest: never enough time to go over discussion points (we talk waaaay too much) ➜


Q: Do you think that EATG is the right organization to carry out such projects? If yes, why?A: As a recognised body with a track record in HIV/AIDS and strong links to NGOs, charities and other bodies it is very well placed to offer this training academy.

Q: What would be your advice to other prospective applicants?A: Don’t be shy!! Everyone is there for the same reason and will have something to teach you. And don’t be afraid to offer an opinion. Chances are you’re the only person from your country and every-one else will want to listen.

Q: Do you think that going beyond “treatment only” paradigm during the Training Academy modules is the right way to pro-ceed with treatment activism in Europe and Central Asia?A: Absolutely. HIV is a virus but it infects people and changes lives. Going beyond pills and doctors is very necessary. Raising aware-ness of what the virus actually is remains a big task, only eclipsed by the stigma surrounding people who have contracted it. Combating all of these things simultaneously is the only way.

Q: Any other comments?A: Don’t forget to have fun!! you’ll be travelling to different places and meeting lots of new people. After you’ve had your head spun with 8 hours of seminars, drug names, case studies and power point, there will be a city to explore and people to get to know. ■

Interview with CésarQ: Could you please briefly in-troduce yourself (name, country and experience with HIV-related topics)?A: Hi everyone! My name is César, I am from Spain and I have been working as a Medical Fellow resi-dent for the last three years. I have

worked in HIV in many areas - research, social work and health man-agement and epidemiology in Madrid, Barcelona and Manhiça, Mo-zambique.

Q: Why did you decide to apply to become a STEP-UP programme participant?A: I found the idea of taking part in a multicultural and multidisciplinary project in which many different experiences and realities are discussed and presented really interesting. I also wanted to understand better the differences between communities and countries facing the HIV epidemic in Eastern and Western Europe. The wide range of themes coming up in this course and the expertise of the trainers were also an asset.

Q: What was the most unexpected thing you have observed from being involved in the STEP-UP programme so far?A: There has been a lot of knowledge exchange. Every discussed topic has been widely explained by professionals with good supporting materials and strong ethical commitment. In every module we have enjoyed hearing experiences from different countries and trying to come up with solutions and ideas to improve HIV public health policies and practices. Q: How would you describe the cohort of your fellow trainees and the trainers?A: Really motivated and professional people from different countries. All of them are involved in HIV topics from different sides and are representative of the huge diversity of people fighting against HIV. ➜



Q: How do projects like STEP-UP bring added value to conferences and other training programmes already happening in HIV treatment, care and prevention? A: As a medical doctor, I have assisted in developing/participated in several courses and this kind of project is a new concept. STEP-UP is a full professional and personal career development programme incorporating different modules. It involves experts and activists from different regions and backgrounds looking for cohesion and common understanding of HIV as a holistic topic.

Q: What are the strongest and weakest things about the Training Academy?A: The strongest thing about the STEP-UP programme is the huge variety of contents and the presentation. The weakest is the lack of time to a reduced number of modules due to the big distance between countries.

Q: Do you think that EATG is the right organisation to carry out such projects? If yes, why?A: Yes, EATG is a really professional and ethical organisation with a strong commitment to HIV infected patients and their realities. As an independent organisation they provide the participants with the latest information and the most evidence-based knowledge.

Q: What would be your advice to other prospective applicants?A: They should be really motivated and prepared to work and think during the modules. They should approach the training with an open-minded point of view and try to learn as much as possible from other countries’ participants and experts. It is necessary that you are really involved in HIV in a daily basis because all participants are really informed and have in-depth understanding and different viewpoints about the HIV epidemic.

Q: Why do you think that focusing on a wide range of topics, not just the ‘treatment paradigm’, is important in the STEP-UP programme and for treatment activism in general in Europe and Central Asia? A: There are many ways to proceed in tackling the HIV epidemic. I support every evidence-based Public Health policy which aims to have a positive impact on human health.

Q: Any other comments?A: Thanks for such a motivating and interesting experience! ■

Interview with luliiaQ: Could you please briefly introduce yourself (name, country and experience with HIV-related topics)?A: My name is Julia Dragunova, ITPCru (International Treatment Preparedness Coalition). Our mission is to ensure universal and free

access to HIV treatment for all PLH and to advocate for a more active participation of PLH in the decision making processes, which influence their lives, through mobilization. I have been working in HIV response for 5 years.

Q: Why did you decide to apply to become a trainee for the Training Academy?A: - it provides an opportunity to acquire and strengthen knowledge

on a wide range of topics that are relevant to PLH community; - it provides an opportunity to personally meet the EATG members

and international activists, to learn more about their experience in HIV epidemic response and community mobilization, as well as about best practices in advocacy;

- it provides an opportunity for my individual professional and personal growth, for a more efficient work in my region and in the areas of my work.

Q: What was the most peculiar/interesting thing that you observed during Modules 1 and 2 and/or during EACS conference in October?A: 1. The most interesting aspects in the first two Modules included

lectures by Svilen Konov on HCV treatment, new and prospective medicines; by Damian Kelly on reproductive health, HIV and STI; it was especially relevant for me to learn about the Swiss Statement about the low likelihood of sexual HIV transmission in case of a constantly undetected viral load and in absence of STI, and on the additional confirmation of this fact in other publications; by Stefan Dressler on TB, TB+HIV and medicines and test kits, as well as his other lectures on treatment initiation issues. In the end of Module 1 Damian Kelly also mentioned various options of fundraising and scholarships for individual payment for participation in different conferences and international meetings, as well as selection criteria for this year’s ➜


International AIDS Conference in Melbourne. It was quite a new information for me, and I have not just used his recommendations personally, but, having discussed this issue with him, I prepared to abstracts and one application to a workshop on the projects, in which I am involved in Russia, but I also shared all Damian’s information with my colleagues from partner organizations in the Russian Federation. It inspired my colleagues and I helped them to prepared three abstracts about their activities. It was rather curious to see that they (as well as I before the Damian’s presentation in the end of Module 1) thought that their activities were too small to be presented at a conference of such high level. In fact, their activities are very valuable and these very activities (my colleagues, whom I helped, have been working ‘in the field’ for around 10 years, helping people from vulnerable groups; they are actively advocating their human rights, actively participate in all kinds of events, organize them and develop their advocacy activities and reports on the basis of this field work) [are really important]. Also, they live with their status openly and convey open messages about life with HIV, about the problems they are facing with the access to treatment, and thus they make a significant contribution in the transformation of public attitude towards PLH. That is, they really devote their lives to HIV-related activities and I think that the results of their work may be very interesting and useful for the conference participants).

2. Thanks to the EATG I managed to visit the International AIDS Conference (EACS 2013) for the first time in my life. The visit itself and an opportunity to participate in the most interesting sessions of the Conference on different approaches to HIV treatment, on epidemiology in different regions, on drug interaction in case of co-infections with HIV, as well as on specific legislations related to PLH, PLH-IDUs in different countries, and forms presentation of stigma issues (Nadine Ferris France from Ireland made a simply amazing presentation) were all very important to me.

Q: How would you describe the cohort of your fellow trainees and the trainers?A: Trainers are top-level professionals, who were interesting to listen to. Information is presented in an easy to understand and digest manner, and it is relevant to my current work.

Fellow trainees are all interesting people. It is the most important that the Training Academy has united people involved in HIV activities from around 20 countries. I had such an opportunity for the first time ever, and during the breaks in each module I try to use this opportunity (to learn new information, e.g., about the cost of ARV drugs in the participating countries).

Q: Do you think that such projects as the Training Academy bring added value to already existing projects on HIV treatment, care and prevention? If yes, why?A: Of course, they are important. Such programs motivate the activists, who are training participants, and their colleagues to take a more active and effective part in the work PLH community. Also, it provides an opportunity to move to a new level through the new international contacts with people working in the similar areas.

Q: What are the strongest and weakest things about the Training Academy?A: Strengths: - international participants-top level trainers -constant communication with participants, feedback collection, which demonstrated that the participants’ needs are important for the organizers; we see that the training process is important for them; we see their flexibility in prioritization of the participants’ knowledge needs (when the modules curricula are developed). I appreciate the highest level of individual approach to logistic issues – I have never seen such a responsive and friendly approach in other large international commercial companies where I used to work. Weakness: arrival of additional participants, who were not there since the very beginning, in the middle of the modules.

Q: Do you think that EATG is the right organization to carry out the Training Academy project? If yes, why?A: Yes Other organizations may organize their own Academies or workshops, that is, they may use their capacity to implement their own initiatives that would be also useful for the PLH community. The Training Academy is the baby of the EATG.

Q: What would be your advice to other prospective applicants?A: One should apply only if one plans to work in the area of HIV response. Applicants much write the truth about their motivation, needs and requirements and do should not be afraid ‘not to meet some standards’ – there are not so many key standards in the EATG.

Q: Do you think that going beyond “treatment only” paradigm during the Training Academy modules is the right way to proceed with treatment activism in Europe and Central Asia?A: Yes, I absolutely agree with it – from the point of view of a person living with HIV or affected with HIV.

Q: Any other comments?A: Thank you for the new opportunities for professional growth. ■



Interview with AkmalQ: Could you please briefly introduce yourself (name, country and experience with HIV-related topics)?A: May name is Akmal, [Uzbekistan] I have been working as a volunteer at the NGO “Community of People Living with HIV” for more than 3 years.

Q: Why did you decide to apply to become a trainee for the Training Academy?A: Training Academy provides an opportunity to acquire new knowledge and learn about the latest global developments in the area of HIV response. I am sure that this knowledge and these skills will help me in my future work.

Q: What was the most peculiar/interesting thing that you observed during Modules 1 and 2 and/or during EACS conference in October?A: I met participants from the West, learned about their absolutely different problems. We have constantly shared our experience with the participants from the CIS countries. The Conference was the biggest event of this kind that I ever participated in. It was very interesting to listen to the reports on scientific and medical topics and to hear about the past and most recent studies in the area of HIV and opportunistic infections.

Q: How would you describe the cohort of your fellow trainees and the trainers??A: The trainers are not just professionals in their respective areas – they can convey the important information to the participants in an exciting and participatory manner.

Q: Do you think that such projects as the Training Academy bring added value to already existing projects on HIV treatment, care and prevention? If yes, why?A: This project gives us an opportunity to see the epidemic response experience of our Western colleagues, to hear their opinions and to learn how they work. ■

Q: What are the strongest and weakest things about the Training Academy?A: The strengths include the ability to cover and discuss many areas, not only medical, but social ones within 5 Training Academy Modules that are needed to know to combat AIDS, but also to learn the public presentation and communication skills. Besides, as I have already mentioned, we have an opportunity to learn from participants, who represent almost 20 countries, and to participate in large conferences. Well, weaknesses? Nothing comes to my mind!

Q: Do you think that EATG is the right organization to carry out the Training Academy project? If yes, why?A: I do not know much about other organizations, but I know that the EATG has been operating in Europe for 20 years. I participated in a number of training workshops organized by the EATG, I have seen the trainers, who are the EATG members, and I can say that I do not see any other organization in its place. The EATG manages it perfectly well.

Q: What would be your advice to other prospective applicants?A: Make every effort to prepare the best possible application to be admitted to the Academy! And, please, do not forget to apply all the knowledge and skills that you learn here.

Q: Do you think that going beyond “treatment only” paradigm during the Training Academy modules is the right way to proceed with treatment activism in Europe and Central Asia?A: Despite the fact that I am a health care professional, all other non-medical issues discussed at the training (human rights, advocacy, etc.) are very relevant and important in my work, so I support such comprehensive training approach. The more you learn, the better. ■

If you are interested in applying for 2014-2015 EATG Training Academy STEP-UP, please follow this link http://eatgtrainingacademy.org where you can find information about the application and the programme.


COPE 2014

In 2014 there are 5 publications that are supported by COPE project and translated into various European languages.Until March 31st, two projects have been already completed thanks to the financial support of BMS, Sidaction and Swim for Life, in Estonia and Latvia.

HIV, pregnancy and women’s health – HIV i-Base (Latvian)

HIV & Hepatitis – NAM (Russian)


EATG at CROI 2014A delegation of the EATG, including Brian West, Christiaan Cziria, Giulio Maria Corbelli and Giorgio Barbareschi attended the 21st Conference on Retroviruses and Opportunistic Infections (CROI) in Boston between the 3rd and the 6th of March. CROI is a scientifically focused meeting of the world’s leading researchers working to understand, prevent, and treat HIV/AIDS and its complications.

The day before the official opening of the conference, a workshop on the cure was organized by the Drug Development Committee (DDC) of the AIDS Treatment Activists Coalition (ATAC). Some scientific updates were presented on allogeneic stem cells transplantation (Boston patients), viral rebound after treatment interruption, and new strategies to target viral reservoirs to eradicate HIV infections. The second part of the meeting focused on the role of the community in advocating and promoting correct information on the cure.

A number of initiatives, such as the NIH-funded Martin Delaney DARE cure research collaboratory project and the CARE CAB (Collaboratory of AIDS Researchers for Eradication), which promote discussion among HIV patient’s advocates on the cure were presented during the meeting. It was also discussed the responsibility of the community in using media and social networks to promote scientifically sound but at the same time accessible information on the cure and therapeutic vaccines. Suggestions were made for a more global involvement of CABs in the debate.

During the conference the community response to the worldwide epidemic of hepatitis C virus (HCV) was presented during the Martin Delaney community session. The session, chaired by Jeff Taylor and Tracy Swan, highlighted the urgent need to mobilize the HIV organizations in order to advocate for more resources and community based models for care and treatments of HCV.

The range of HIV-related topics presented by researchers and experts of different bio-medical fields during the days of the conference varied enormously. These were some of the areas which were covered in the sessions attended by the EATG delegation: progresses on vaccine immunology, cure, biomedical prevention, new treatments and challenges for HCV and other co-infections (HPV, TB, and other STIs), cognitive and neurological disorders and other comorbidities related to HIV infection, treatments and ageing, PrEP and new strategies for long-acting treatments and prevention, new epidemiological data on transmission among MSM, IDUs, sub-saharan populations. More reports on CROI 2014 can be found on the facebook page EATG at CROI 2014. ■

SCIENTIFIC ACTIVITIES

ECAB

Twenty-three ECAB members participated to the first HIV ECAB of 2014 (31st of Januay-2nd of February), which was located at the NH Grand Place Arenberg hotel in the centre of Brussels. During ECAB the members met with ViiV and Bristol-Myers Squibb (BMS) to give their input on new treatment developments, ongoing trials, updates on paediatric formulations, cure programmes, access and pricing issues. A training on the scientific and regulatory processes linked to the development of paediatric treatments in EU was delivered by Michal Odermarsky. During the Sunday meeting Paola Mosconi, Coordinator of the ECRAN consortium, presented some results of the ECRAN project and discussed with the members possible collaborations for the upcoming event (see the ECRAN session).

ECAB Agenda 2014:20-22 June: ECAB Hepatitis C – Lisbon17-19 October: ECAB HIV – Brussels3-5 October- Sitges VII meeting on Hepatitis C - Spain12-14 December (to be confirmed): ECAB HCV ■


EUPATI

In the first months of 2014 few members the EATG have been involved in the development and revision of material for the Work Package 4 (WP4) of the EUPATI consortium. The objectives of WP4 are: 1) to develop educational topics in six topic areas. 2) to create a training strategy, contents and course infrastructures for an EUPATI Certificate Course to develop “Patient Experts”. 3) to develop new educational material as well as collect and adapt existing educational material that can be used by patient advocates to educate their members. 4) to develop, collect and adapt information material for lay-public to be provided in a Wiki-type library.

EATG members were asked to elaborate and provide material on different topics on the base of their expertise. Currently, EATG is contributing to the development of training materials for the EUPATI first face-to-face meeting and e-learning courses.

On April 2 a workshop was organized in Warsaw to get the view of patients from different organizations across Europe on successful example of clinical information sharing. EATG co-facilitated the session on best examples and practices of patients involvement into R&D.

For more information on the EUPATI project and meetings you can consult the following link:http://www.patientsacademy.eu/ ■


ECRAN

The European Communication on Research Awareness (ECRAN) consortium met in Milan on February 6th to plan the ECRAN meeting. The event, which will take place in Luxembourg on 20th and the 21st of May, will follow the European Clinical Research Infrastructure (ECRIN) annual meeting. During those two days, the members of the consortium will present the outcomes of the project and discuss with the participants possible strategies to disseminate knowledge on clinical research among the general public. Members of the EATG will be presenting in two sessions of the event: Experiences from participation in design and promotion of randomised clinical trials: examples from patients’ organizations – with by Brian West as a chair of the session and Tamás Bereczky as a speaker. A second speech on the community perspective will be given by Svilen Konov during the session: The bottlenecks in disseminating information on clinical trials and how can we blow up the bottlenecks? ■



Increasing access to hepatitis C treatment – an EATG priority

On the 1st of February 2014, Chris Ward was appointed EATG Hepatitis Consultant as part of EATG’s on-going commitment to advocating for the best, most effective, affordable antiviral treatment for people living with hepatitis C, particularly including PLWHIV. In his part-time consultancy role, Chris has been co-ordinating the efforts of the EATG hepatitis portfolio via a dedicated team, the Hepatitis Steering Committee, representing the advocacy interests and experience of EATG’s diverse geographic background, from Georgia to France and beyond!

“We are witnessing a revolution in the treatment of hepatitis C virus with powerful molecules capable of curing the infection. There is no question that these treatments that can save millions of lives must be made universally available at an affordable price.”

Françoise Barré-Sinoussi, virologist, Nobel Prize winner for her early work on HIV, & President of the International Aids Society.

The Hepatitis Steering Committee is flourishing and supplying the benefit of their years of advocacy experience to the work of the hepatitis portfolio. EATG has been approached by diagnostics researchers in order to support rapid, non-invasive diagnosis of fibrosis and liver failure. Efforts to involve decision makers and policy makers in the fight to obtain access to the best, most effective and affordable antiviral treatment for people living with hepatitis C have been accelerated.

Through the efforts of ECAB members and the Hepatitis Steering Committee, guidelines committees such as that of the European

AIDS Clinical Society continue to be reminded that people living with hepatitis C must be at the centre of hepatitis C drug development. Enhanced information sharing between EATG and other patient-led organisations involved in hepatitis C advocacy has been implemented, and is expected to lead to a strong, unified voice in the battle to achieve our objectives.

“We must learn from the HIV epidemic and ensure that affordable prices are in place so that the millions with Hepatitis C infection can get new drugs that appear to be a cure.”

Médecins du Monde

Close collaboration with the Policy Working Group, and its Affordability Steering Committee is expected to form the cornerstone of EATG’s intersectional response to the current hepatitis C treatment paradigm, combining the expertise from many branches of the membership in to a concerted effort. There remains much work to be done, and it is only with the continued support of all EATG members that the hepatitis portfolio can continue to make strides in advocating for the best, most effective and affordable treatment for hepatitis C across the WHO Europe region.

The level of support from - and professional solidarity of EATG members for my work has been immense and is greatly appreciated, if you want to get more involved in EATG hepatitis treatment advocacy please get in touch!

Chris Ward, EATG Hepatitis Consultant

If you wish to know more about EATG’s hepatitis portfolio or to get more involved, please contact Chris on [email protected] ■

EATG Finances Online We are very happy to inform you that the following documents have been published online:

2013 Income http://www.eatg.org/gallery/workplan/EATG%202013%20INCOME.pdf

2013 Expenditure http://www.eatg.org/gallery/workplan/EATG%202013%20EXPENDITURE.pdf

2014 Budget http://www.eatg.org/gallery/workplan/EATG%202014%20Budget.pdf

Our 2013 external auditor’s report will also be available online by the end of April, however if in the meantime you have any questions or need any further information, please do not hesitate to contact [email protected] ■


POLICY WORKING GROUP

Impact of austerity measures on the HIV response in Portugal and SpainIn March, EATG published two community country briefs on the impact of austerity measures on the HIV response in Portugal and Spain. The papers aim at providing a community perspective on the challenges for discussion with different stakeholders at national and European level. The Portugal paper was researched and drafted by Daniel Simões and the Spain paper by Diego Garcia. The papers cover issues such as cuts in HIV/AIDS programmes, access to treatment, public funding for interventions, impact on key and marginalised populations, impact on HIV voluntary screening and counselling. ■

Access to medicines and EU Free Trade AgreementsIn January, as co-chair of the EU Civil Society Forum, EATG wrote to the EU HIV/AIDS Civil Society Forum wrote to European Commissioner for Trade to ensure that the agreement negotiated between the European Commission on Behalf of the EU and Morrow does not contain any intellectual property provisions that would go beyond the requirements of the TRIPS Agreement or any investment requirements that could harm access to medicines. The group also asked for clarification on how the Commission aims to ensure that the DFTA does not hamper access to medicines. On 11 March, EATG, as one of the chairs of HIV/AIDS CSF, received a response from the Commission which can be downloaded below.

Stigma, key populations and HIV In February, EATG supported a community call to head of UNAIDS for a clear message on human rights, at 4th Conference on HIV/AIDS in EECA.

In February, EATG advocated for an alternative resolution to the debated report sex exploitation at the European Parliament calling member states to adopt the Nordic model to deal with the issue of sex trafficking, i.e. punishing the demand for sexual services and not the supply of these services. In support of TAMPEP and International Committee on the Rights of Sex Workers, EATG reached out and collaborated with a few MEPS, other groups and UNAIDS to convince MEPs to reject the initial report and support the alternative one. In the end some amendments were made to the initial report and it was adopted. The amendments were not sufficient to change the message of the initial report. Advocacy at least served to raise awareness on others views with the European Parliament. ■

The use of ARVs as part one of the prevention tools (photo_TasP)In February, together with NAM, EATG launched a Community Consensus Statement setting basic standards that preserve the right of people with HIV to make informed choices about their health, while maximising the power of HIV drugs to help end the epidemic. The Statement was co-authored by the European AIDS Treatment Group and NAM and is endorsed by over 30 prominent organisations in the

field of HIV prevention and advocacy, including the Global Network of People Living with HIV (GNP+). The statement can be found and signed on at www.HIVt4p.org. ■

Political leadership for an effective response to HIV and related infections EATG has been engaged for the last two years in advocating for renewed political attention for HIV/AIDS at European and in particular an updated policy framework from the European Commission. Last year in May, the Commission committed to at least update its Action Plan that came to an end in December 2013 to avoid a policy gap while the procedure for a possible new framework is underway. As co-chair of the EU HIV Civil Society Forum, EATG provided written input to the European Commission in October and at the HIV Civil Society Forum in December. The Action Plan was published on 14 March and reflects most of the points presented by civil society.

On 18 March, EATG participated in the European Commission Conference “Health in Europe, making it fairer” in Brussels. The conference focused on how to improve fairness and equity in health in Europe, access to health and how to tackle discrimination in health. During the HIV workshop, Commissioner Borg presented the key points of the action plan: putting HIV/AIDS high on the political agenda, reaching out to key groups, specific focus on stigma and discrimination, improving access to testing. There was discussion on the ways forward, including the following points.• Political leadership needed for effective

policies and their implementation• Discussing HIV in EU member states health

and social affairs ministers’ meetings• Organising a review of the Dublin

Declaration and the situation on HIV in Europe ten years after during the Italian Presidency

• Scaling up testing, including through low threshold community screening services

• The provision of both treatment and prevention are essential

• Find a way to have more affordable medicines for HIV and HCV

• Excluding undocumented migrants from access to health care is counter-productive to reduce health care costs

• Supporting (including funding) civil society in dealing and containing the epidemic is essential

• Need to address HCV, TB and STIs as well as HIV

• Targeted measures for marginalised groups

• Maintain professional contacts with Russia• What impact of the Ukraine, Crimea

and Russia situation on access to OST, treatement. ■


EATG Governance

On February 3rd 2014 EATG organised its annual stakeholders meeting at the NH Grand Place Arenberg.

The meeting was attended by 29 stakeholders (partner organisations, networks, funders, international institutions etc.).

Brian West, chair of the organisation, showed the 2013 achievements on advancing earlier testing, treatment access and affordability, key populations and political leadership during a short presentation. The presentation was followed by an introduction to the 2014 workplan.Presentations by the different pillars within the organisation were the start of a more in depth discussion with the participants.

The presentation on ‘Early access to testing, treatment and other projects with vulnerable populations’ showed the initiatives taken by EATG to support key populations such as MSM, migrants and IDU in getting better access to optimal testing, treatment, care and prevention.

‘Raising patients‘ awareness and participation in pharmaceutical R&D’ gave an overview of the work being done by EATG within the framework of the EUPATI project.

The last presentation of the day ‘Laying the foundations of treatment activism: follow up activities of capacity building’ showed how EATG has initiatied a system that allows local communities to perform activities after a capacity building activity provided by EATG. Such activities allow communities to immediately put gained knowledge into practice. It also reinforces capacity building by immmediately adding new activities.

During the stakeholders meeting the newly established EATG External Advisory Board was introduced to the stakeholders: Lella Cosmaro, Jürgen Rockstroh and Michel Kazatchkine and Matthew Weait.

After a general discussion with constructive feedback and suggestions all participants were invited to attend a networking reception. More information is available at http://www.eatg.org/news/publication ■


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 • 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 • Bristol-Myers Squibb • European Commission • Janssen • Gilead • HIV in Europe • Merck • Sidaction • Swim for Life • Theratechnologies • Viiv Healthcare

eatg newsletter 01 april 2014

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