Newsletter Fall Issue 2 - 2014
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ECAB and Science Activities
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Capacity Building Activities
13 EATG at 2014 AIDS Conference 16 Policy Working Group
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. 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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Scientific Activities......................................................................................................................................................................................................... 4 EATG Representation................................................................................................................................................................................................. 8 Training and Capacity Building Activities............................................................................................................................... 9 COPE 2014................................................................................................................................................................................................................................ 12 Updates From 2014 Aids Conference, Melbourne................................................................................................. 13 Policy Working Group.......................................................................................................................................................................................... 16
Editorial team Ruben Alonso Giorgio Barbareschi Koen Block Damian Kelly Ann-Isabelle von Lingen Oleksandr Martynenko Bryan Teixeira Mariana Vicente Design Altitude Pictures EATG www.shutterstock.com
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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Editorial
by Koen Block, Executive Director
Dear colleagues and partners ! I hope you had a relaxing and inspiring summer. In this summer edition of newsletter you can find a description of our activities within the past few months. EATG is increasingly investing in capacity building, both internally and externally. The ECAB training on chemsex was well attended and greatly appreciated by the participants. The Training Academy had 2 new modules. This academy and other capacity building initiatives such as training in Romania have been very successful and new ones are already being planned to take place during December 2014 and June 2015 – stay tuned for updates in our upcoming newsletters. This issue shows you some feedback from participants about their appreciation and importance of participating in the educational and training programs that EATG has been continuously organising. Chris Ward organised his first ECAB meeting in HCV in Lisbon, a country that faces important challenges on HCV co-infection. With newer and more efficient therapies, the challenge of access is now high on the agenda. Our activities show the importance of community involvement within scientific research and access to treatment, care, testing and prevention. This is also shown in the participation of EATG within the EUPATI project that is now really getting on a higher speed. But also within the framework of ECRAN, the role of community in designing clinical trials has been highlighted. Other activities are still planned for this year that focus on the importance of involving community. The newsletter provides you some inside information on how our members represent the organization in different groups, committees etc. as the article about UNAIDS shows you. The involvement of communities in steering committees and advisory boards not only provides a crucial community perspective but also brings in additional expertise to the development of action plans and activities. Empowerment of communities can also be done via information. EATG continues investing in the translation of brochures to bring updated treatment and prevention information to community members in their own language across Europe and Central Asia. EATG has also invested a lot in educating and empowering stakeholders on topics such as Treatment as Prevention during the IAS 2014 conference in Melbourne. Members present at the conference were involved in many different meetings and activities. You can find the feedback on some of them in this newsletter. We are getting close to our 2014 General Assembly in Istanbul. Time to evaluate what we did in the past year and to start looking forward to the upcoming year(s). I am looking forward to see back some ‘older’ I want to pay tribute to the passengers of flight MH17 and especially the ones that helped us in the past to keep HIV on the political and research agenda. Without their support and dedication we wouldn’t have been where we are today. They will remain an inspiration for many of us. EATG members and staff wish you a very prodictive start of autumn and remain at your disposal if you may have any further questions.
Koen Block, EATG Executive Director European AIDS Treatment Group Newsletter - Issue 2 - 2014
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SCIENTIFIC ACTIVITIES
ECAB Twenty-one ECAB members attended the second HIV ECAB of 2014 (April 4-6) in Brussels. During the meeting the members had the opportunity to discuss with representatives of Gilead and AbbVie on treatment developments, ongoing trials, updates on clinical programmes, access and pricing issues. On Saturday April 5 a training on ChemSex investigated the use of new drugs and associated risky sexual behaviour among men who have sex with men. Examples of integrated interventions for men who have sex with men using new drugs, were presented with a specific focus on HIV positive gay man. The training was chaired by Tamás Bereczky and different sessions were presented respectively by Sigfried Schwarze from EATG, Dr Christopher Hilton from West London Mental Health, and David Stuart from Chelsea Westminster Hospital. A real life testimony was also presented during the training. On the Sunday meeting the Scientific Officer of EATG, Giorgio Barbareschi, presented the latest updates of the EUPATI project and discussed the involvement of members in future deliverables. The month of June (20-22) was dedicated to hepatitis C. Gilead, Bristol Myers Squibb and AbbVie, engaged in the discussion on HCV treatment with 23 ECAB members in Lisbon. During the meeting the members discussed and evaluate updated clinical data concerning innovative direct acting antiviral combinations. Plans for roll-out, expanded access and pricing throughout the WHO Europe region were also discussed (see the session below Increasing access to hepatitis C treatment).
Upcoming ECAB meetings: 3-5 October- Sitges VII meeting on Hepatitis C “From pipeline to real life” – Sitges, Spain 17-19 October: ECAB HIV – Brussels, Belgium 6-7 December ECAB HCV – London, UK
Since last May EATG has been developing a Glossary of Terms and Abbreviations. The purpose of this project is to create a too,l which may help a user to better understand unfamiliar HIV related terms and abbreviations. The glossary intends to cover various terms concerning HIV and related co-infections (Hepatitis C, Tuberculosis), Clinical Trials, key and vulnerable populations, Policy and Prevention. The first version of the glossary concerning hepatitis C and clinical trials terms was distributed at the last ECAB meeting. The ECAB members gave a positive general appreciation of the glossary and have made some improvement suggestions. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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SCIENTIFIC ACTIVITIES
EUPATI
Activities in the Work Package 7 of EUPATI project, which is co-leaded by EATG, are progressively gaining speed. On Sunday June 22, following the hepatitis C ECAB meeting in Lisbon, seven EATG members were invited to provide their input in the creation of a EATG task force of consultants to guarantee the involvement of the members in the EUPATI project. The consultants will ensure the input of the community in the development of recommendations, code of conducts and guidelines to facilitate the participation of patients in medicines research and development (R&D). Following this first consultation EATG is going to extend the number of members within the task force in order to guarantee the representation of members from different EU regions. The task force will be informed on the development of the EUPATI project and the members will be asked occasionally to provide patient’s feedback into different tasks and deliverables. On July 23 the EUPATI workshop “Meaningful patient involvement in industryled R&D” was held at the Bayer premises in Berlin. The meeting was about discussing concrete actions that help support patient involvement in industryled research and development. EUPATI partners are ideally placed to make patient involvement a reality and have a fundamental role to play in creating a positive environment for all stakeholders. Three breakout sessions, followed by a priority setting exercise, supported by 22 best practice cases, led to great discussions and defined next steps. Every attendee was involved in three breakout sessions designed to explore the benefits of patients and advocates involvement, the current barriers that exist and the relevant compliance codes and frameworks that need to be updated to enable smooth and transparent partnership with patients and advocates during the research and development process. 22 cases from different disease area formed the basis of the discussion, including 2 cases provided by the EATG. The participants came together in the final session to discuss the outcomes and identify priority activities that should be implemented. The presence of EATG was ensured by David Haerry, project leader for the EUPATI project, the EATG Scientific Officer Giorgio Barbareschi and by 4 EATG members (Ferenc Bagyinszky, Sanja Belak Kovacevic, Nenad Petkovic. Deniz Uyanik).
New learning/teaching methodologies tailored towards patients at large A public report of this meeting is available on the EUPATI website. EUPATI work package 7 is initiating its work on deliverable D7.4 (New learning/teaching methodologies tailored towards patients at large). It is our goal to identify new teaching methodologies and to provide guidance on the use of media, information technology and teaching material to non-expert patients and the public at large. D7.4 output is not designed to inform the ongoing EUPATI project itself but should inform sustainability planning and other educational activities within the Innovative Medicines Initiative (IMI) and beyond. In order to compile exhaustive recommendations, we want to collect information about already existing methodologies or strategies under development. Please let us know if you are aware of any ongoing projects, documents or other types of activities or information concerning new learning/teaching methodologies for the interested public at large (lay audiences). This should include methodologies targeted at hard to reach audiences and vulnerable populations. You can provide input and information by sending a message through the following link https://www.surveymonkey.com/s/EUPATI_NEW_ LEARNING_TEACHING_METHODOLOGIES Please feel free to send this communication to any other relevant contact that could provide further information. We are very grateful for any kind of support that you can provide. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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SCIENTIFIC ACTIVITIES
ECRAN
On May 21 2014 the EATG was present to the European Communication on Research Awareness (ECRAN) Meeting. Patient’s representatives together with clinicians, researchers and consumer’s representatives, together with journalists and methodologists discussed the importance of education on clinical research. During the meeting Brian West, chaired the session: Experiences from participation in design and promotion of randomised clinical trials: examples from patients’ organisations. Damian Kelly presented on patient involvement in clinical trials, bringing concrete examples from the history of EATG. In a following session Svilen Konov discussed barriers to disseminating information on clinical trials the patients ‘organization perspective. EATG was also chairing and reporting for the break out group which discussed patients’ needs for better involvement in clinical trials. http://www.ecranproject.eu/en/content/communicate-clinical-researchspeeches On Monday July 28th members of the ECRAN Consortium gathered at the Istituto Mario Negri in Milan to discuss possible future developments of the project. In addition to the need of maintaining and updating the ECRAN website, three different lines of activities have been identified for potential future activities following the funding period: - the ECRAN Consortium explored the possibility of developing a Europeanbased informed consent form to be used as a reference model in different countries and contexts. - the ECRAN Consortium acknowledged that Citizens and patient organisations remain key stakeholders to promote clinical research. It is important to foster the collaboration with those two groups in order to increase the awareness about clinical research in the general population, and to involve patients in all the phases of research. - Providing education on clinical research to young people will have a significant impact on the level of knowledge and participation in the general population. The ECRAN partners discussed some initiatives aimed at improving the knowledge of young people on clinical research, such as workshops in schools, and dissemination and testing of new methods of education. ■
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SCIENTIFIC ACTIVITIES
Increasing access to hepatitis C treatment This year has seen an unprecedented expansion of EATG activities under the remit of the hepatitis portfolio. Member engagement and involvement has increased, with excellent collaboration between EATG working groups and Steering Committees. The establishment of Company Liaisons for the hepatitis remit, whilst in its early stages has already been of great utility. The new DAA’s (direct acting antivirals) targeting hepatitis C show outstanding efficacy in most genotypes however issues of access, pricing and affordability have been a top priority. Whilst pricing of hepatitis C DAA’s forms one component of the access debate, for many members, the price of a pill is considered the starting point for any negotiation. EATG is implementing hepatitis C treatment advocacy on many levels: from direct constructive engagement with pharmaceutical industry, to direct action when our many voices must be heard by a larger audience. Since February, four press releases concerning access to hepatitis C DAA’s were developed by the Hepatitis Steering Committee. Their release was timed to coincide with major events such as the EASL International Liver Congress held in April and later, the WHO World Health Assembly. One press release was later cited by Portuguese medicines regulator INFARMED and three European media outlets. A press conference held at the Lisbon ECAB meeting in June enabled EATG voices to be heard in support of GAT Portugal.
STEP - A community initiative to design the pathway to a long-term remission of HIV infection, Glasgow November 1st The European AIDS Treatment Group (EATG) is organizing STEP, a Community Training about research on strategies for longterm remission of HIV infection off-antiretroviral therapy (or “Cure” research) on Saturday, November 1 in Glasgow, the day before the HIV Drug Therapy Conference. The training will give an overview about investigational strategies used in this field and analyze in depth the mechanism of persistence and intervention to reduce the size of the reservoirs. The participation to the training is open to all the community members with a specific interest in the debate on this strategies. Depending on the funding available, EATG will offer up to 30 scholarships for community members to cover for the accommodation of the night of October 31st. Please respond through the link below to let us know if you will be attending and to apply for a scholarship by September 1 (https:// www.surveymonkey.com/s/STEPS_Application_Form) For more information on the training please contact Giulio Maria Corbelli (giuliomariacorbelli@gmail.com) Please contact Giorgio Barbareschi, EATG Scientific Officer, for further information on ECAB activities or on the projects (giorgio. barbareschi@eatg.org) ■
EATG, represented by Chris Ward and Ann-Isabelle von Lingen (EATG Policy Officer), participated in the multi-stakeholder hepatitis activism planning committee at AIDS 2014, Melbourne, to implement non-violent direct action in protest against the prices of hepatitis C DAA’s. EATG members marched in solidarity with members of TAG, INPUD, ITPCru, ActUp Basel. More recently, a Joint Declaration to European governments in collaboration with Correlation, ELPA, WHA, EASL urging policy maker support for treatment access and compulsory licencing as a last resort has been released. This initiative was spearheaded by Luis Mendao, EATG member and world leader in hepatitis C advocacy. Hepatitis advocacy is at a critical stage, and new members are always welcome to become involved in our work. Please contact Chris Ward chris.ward@eatg.org for more information. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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EATG REPRESENTATION
UNAIDS Board Meeting, July 2014: Highlights from the NGO Delegation
UNAIDS had one of its usual twice yearly Programme Coordinating Board (PCB) meetings in early July 2014 and EATG was ‘at the table’ through its representative on the NGO Delegation. The NGO Delegation made several lively interventions during this Programme Coordinating Board Meeting. UNAIDS is promoting the aim of ending the AIDS epidemic by 2030. At the same time, there is a broader UN exercise of producing Sustainable Development Goals (SDGs) for beyond 2015, many of which also have a deadline of 2030. This is an ambitious and challenging scenario where many significant social and health goals share a common target date for achievement. It will be crucial to ensure that ‘ending AIDS’ is not simply defined by bio-medical targets but also involves ensuring universal access to prevention, treatment, care and support.
We also addressed the various crises precipitated by new laws in many countries that result in the increased stigmatization of key vulnerable populations, undermining their access to prevention, treatment, care and support. However, since these crises often only affect key populations, they do not fit the traditional definition of “humanitarian emergencies” which need to be country/populationwide events. As such, these new crises do not trigger the global responses prepared for humanitarian emergencies. There is need for a re-think on what constitutes such emergencies. The NGO Delegation requested UNAIDS to include in its risk management a plan to deal with political and social crises that impact on the delivery or receipt of HIV prevention services and care to people at risk of HIV, or living with HIV or particular subsets of these populations. The Board meeting also provided the opportunity for the NGO Delegation to critique the dwindling civil society space in many countries. In specific, we addressed the current dominant partnership model as having reduced civil society to subcontractors and implementing partners, removing the space for policy discussions on alternative approaches. As a result, critical advocacy, human rights and civic engagement-related programs are receiving less and less attention and resources. One major victory was the decision of the UN General Assembly to hold a High Level Meeting (HLM) on AIDS in 2016. This idea initially came from civil society and was initiated at the December 2013 PCB by the NGO Delegation. Between that PCB decision and the final UN decision, there was a lot of promotion of the HLM by the NGO Delegation and civil society globally. EATG was a signatory to the request for this HLM. We see this UN decision as a significant civil society achievement helping to make sure that HIV does not slip off of the political agenda in the post-2015 era. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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TRAINING AND CAPACITY BUILDING ACTIVITIES
2013-2014 EATG Training Academy STEP-UP: Modules 3 and 4 Building on the knowledge gained from previous modules, Module 3 (10-13 April) focussed on soft skills and communications techniques within the field of HIV, including the importance of the
doctor/patient relationship. For this module, some training sessions were different between the English and Russian-speaking groups according to requested training topics
Day 1 Topics
Day 2 Topics
Day 3 Topics
English-speaking participants
• Psychological, psychosocial and sociological issues relating to HIV • Protocol review
• Informing patients about HIV treatment • Doctor-patient relationship
• Patient-centred care
Russian-speaking participants
• Introduction to medical statistics • Protocol review • Informing patients about HIV • Doctor-patient relationship treatment
• Patient-centred care
Overall module 3 of the STEP-UP programme received positive participant feedback: – 94% found that the trainers answered their questions effectively – 94% thought the trainers were interactive and engaging The following improvements were made in participants’ knowledge: – 100% felt that their knowledge of medical statistics had improved – 100% felt their knowledge of psychosocial skills and counselling had improved – 100% felt their knowledge of protocol review had improved – 100% felt their knowledge of informing patients on HIV treatment had improved – 100% felt their knowledge of patient-centred care had improved Module 4 that took place on 09-12 June in Warsaw, focused on the HIV and HCV treatment landscape; from information about available treatments and their cost, to the dangers of alternative/complementary therapies often discussed in non-clinical settings: Day 1 Topics
Day 2 Topics
• PEP, PrEP and TasP in HIV treatment discourse
• HCV treatment guidelines in your country • Alternative and complementary • HCV treatment update medicines • Research ethics in clinical trials • Calculating R&D costs and associated issues in drug pricing
• Mapping stakeholders in HIV treatment access
Day 3 Topics
Overall module 4 of the STEP-UP programme received positive participant feedback: – Over the 2.5 days of training, 84% of participants agreed or strongly agreed that the training content of the sessions was interesting and engaging – Over the 2.5 days of training, 80% of participants agreed or strongly agreed that the content was relevant and at the appropriate level – 90% found that the trainers answered their questions effectively – 100% thought the trainers were interactive and engaging The following improvements were made in participants’ knowledge: – 95% felt their knowledge of PEP, PrEP and TasP had improved – 100% felt their knowledge of partners for access in HIV treatment had improved – 94% felt their knowledge of HCV treatment guidelines had improved – 94% felt their knowledge of new HCV treatments had improved – 100% felt their knowledge of pricing and access to HIV treatment had improved – 100% felt their knowledge of R&D costs had improved – 100% felt their knowledge of alternative and complementary medicines had improved European AIDS Treatment Group Newsletter - Issue 2 - 2014
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TRAINING AND CAPACITY BUILDING ACTIVITIES
EATG Training Academy at AIDS 2014 Conference EATG’s Training Academy “STEP-UP” submitted an abstract for the conference which quite literally was being talked about from every corner of the globe. From Australia to Canada the USA to Africa people had heard about it. Many people commented on what a good program this was and wanted to know more about it. There were many comments saying that this kind of program was long overdue, if we want to engage new young people to the sector, then we need to provide the training for them to work in the sector. A number of people asked what the uptake of applications was for the program and couldn’t believe the amount of applications that had been received for the available places. Others wanted to know the mix of participants and how they all “came together”. The program has proved that by bringing people from different backgrounds together, the new generation of HIV advocates is being born.
health, stigma and discrimination, medical statistics, psychological psychosocial and social HIV issues, Doctor patient relationships, patient cantered care, PrEP PEP and TASP, identifying partners to work with, pricing and access, fundraising and communications, HIV CURE, and a follow up activity that participants can apply for a small grant to implement a program. The full program can also be found at the Academy’s website www. eatgtrainingacademy.org The second year of the Academy will be launched at Glasgow HIV conference in October 2014 where the conference committee has also very kindly agreed to give the new participants a free registration to the conference. ■
2014-2015 EATG Training Academy STEP-UP For 2014-2015 STEP-UP Training Academy we have received close to 300 applications for just 20 places. The recruitment was particularly challenging, as we received many applications from outstanding candidates from 37 countries in Europe and Central Asia. This time the program was especially attractive to not only communitybased activities, but also to a large number of young healthcare professionals and medical students, particularly from the UK, Serbia, Spain, Ukraine, Russia and Kazakhstan. In 2014-2015, the Training Academy will comprise of five training modules on various topics pertinent to HIV/AIDS treatment literacy, advocacy and activism in Europe and Central Asia. The training sessions will take place on the following dates:
A substantial amount of interest was shown from different continents and a number of discussions took place about the possibility of taking the program to different parts of the world. For those that unaware of the Academy the program consists of 5 modules run over a 12 month period. For the first year’s program EACS gave 20 free conference places to the delegates on the course allowing for them to attend the European AIDS Clinical Society’s conference which was held in Brussels in 2013. The 5 modules covered: HIV treatment guidelines, HIV treatments, side effects, coinfections (TB and Hep C) conference participation, drug names and classifications, drug resistance, treatment changes and interruptions, clinical trials and protocols, HIV and pregnancy, HIV and sexual
• Training Module 1: “Introduction to the Treatment of HIV/ AIDS and Related Co-infections: HCV and TB” on 31 October-06 November 2014 (including attendance at the 2014 HIV Drug Therapy Congress) in Glasgow, UK • Training Module 2: “Advanced Topics in the Current HIV/AIDS, HCV and TB Treatment Discourse in Europe and Central Asia” on 19-22 February 2015 in Brussels, Belgium • Training Module 3: “Introduction to HIV/AIDS Treatment Advocacy in the Contemporary Treatment Discourse in Europe and Central Asia” on 14-15 May 2015 in Warsaw, Poland • Training Module 4: “Soft Skills and Presentations in Public Health: HIV/AIDS Perspective” on 09-12 July 2015 in Sofia, Bulgaria • Training Module 5: “Train the Trainers: Sustainable Responses to HIV/AIDS in Europe and Central Asia” on 18-25 October 2015 (including participation in XV EACS Conference) in Barcelona, Spain. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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TRAINING AND CAPACITY BUILDING ACTIVITIES
“Promoting Universal Access” - Training on HIV/AIDS Treatment Literacy (15-18 May, Bucharest, Romania) Following the training held in 2010, EATG returned to Romanian with a new training on HIV treatment literacy and advocacy. The training brought together community activists and healthcare professionals from Southern Europe for an intensive 2.5 day training that covered the following topics: a) Initiative and managing treatment; b) Treatment adherence and side effects; c) Treatment changes and interruptions; d) Drug resistance; e) Access to treatment, stock outs and treatment advocacy; f ) PEP, PrEP and TasP as concepts for HIV treatment and prevention
Relying on a mix of presentations, workshops and plenary debriefs, the training aimed at covering treatment-related issues that are relevant to the region in terms of regional HIV epidemiology, availability of medication and reflecting political and cultural realities. The training and particular case studies on assigning PEP revealed that the countries of Southern Europe share similar problems in terms of access to and availability of treatment. However, it also underlined striking differences that are used by community-based organizations for mobilizing vulnerable groups for PrEP and early testing. Following the training, EATG will support two projects for post-training activities. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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COPE 2014
In 2014 there are 10 publications and 2 country briefs that are supported by COPE project and translated into various European languages. Until August 18th, four projects have been already completed thanks to the financial support of BMS, Sidaction and Swim for Life, in Estonia, Italy, Latvia and Macedonia. • HIV, pregnancy and women’s health – HIV i-Base (Latvian) • HIV & Hepatitis – NAM (Russian) • Qsfsqf – HIV i-Base (Macedonian) • Sesso Gay Positivo – AFAO (Italian)
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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UPDATES FROM 2014 AIDS CONFERENCE
Satellite Sidaction AIDS 2014: Toward 2020, Future Models for HIV Research, Activism, Integration and Migrants & MSM Programs Sunday, July 20, 13 h 30 - 15 h 30 - Clarendon Room D & E Melbourne Convention and Exhibition Center: learn more Sidaction organized a satellite session to find answers to the challenges of tomorrow in the fight against HIV: integration, research, activism... This satellite provided a unique opportunity to think about the future with engaged stakeholders and high-level speakers such as Professor Françoise Barré-Sinoussi, Inserm and Pasteur Institute; Ms. Karyn Kaplan, TAG, Dr. Louis Pizarro, Solthis. EATG was also represented by Koen Block. The main theme of the satellite session was ‘Toward 2020, Future Models for HIV Research, Activism, Integration and Migrants & MSM Programs’. After some opening remarks from Eric Fleutelot, Nobel Prize winner and IAS 2014 chair Françoise Barré-Sinoussi started the satellite session with a presentation about HIV research toward 2020. The global response against AIDS led to build remarkable models in health and development such as the Organization of scientific research, social mobilization, the involvement of people living with HIV, or the organisation of care. However, 30 years after the Denver Declaration, the exceptionalism of AIDS may no longer be seen as such by many stakeholders. Global challenges are numerous; another global model is necessary. So we should start asking ourselves which developed principles will be suitable for the next 20 years.
Karyn Kaplan looked at how social mobilization should happen in the future and Louis Pizarro provided some reflections and different perspectives on the concept of HIV integration. A new way of thinking is needed, built on the foundations already established. While debates on vertical and horizontal approaches often lead to disappointing conclusions, should we not instead prevent competition and strive for integration? How will researchers working on HIV be able to build stronger collaborations with those working on other diseases, and vice versa? AIDS activism is perhaps less visible than before. A new way of activism should also be considered. But what kind of activism will be effective in the years to come? Koen Block spoke about challenges in the West, where the outbreak appears under control, but new challenges are becoming more and clearer. In Western Europe two mobile populations are facing important challenges: migrants and MSM. Both groups are facing increases in HIV infection and are considered as highly vulnerable to HIV infection, stigma, discrimination etc. Common strategies are needed, not only looking at the local and national level, but also – and even more importantly – at cross-border level. Strategies without borders should be adopted within Europe to combat the epidemic among migrants and men who have sex with other men. These strategies should look at prevention, access to testing and treatment, legal issues, actions against xenophobia and homophobia, discrimination etc. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
Koen Block
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UPDATES FROM 2014 AIDS CONFERENCE
EATG and AIDS 2014 Conference During the International AIDS Conference AIDS2014 held in Melbourne, Australia, EATG coordinated the European Networking Zone, in collaboration with ECUO and the Eurasian Women’s Network on AIDS. Focused on MSM, women and migrants, a total of 19 sessions from Sunday 20 to Friday 25 July were held with great attendance and very interesting topics focused on PrEP, Treatment as Prevention, MSM and drug use, early testing, self-testing, HIV criminalisation, and the needs of the next generation of HIV advocates, among others; apart from being a space for face to face meetings and networking. EATG thanks all the organisations and people involved who trusted EATG to deliver their message and knowledge sharing. â–
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UPDATES FROM 2014 AIDS CONFERENCE
A hot topic at the conference was the use of PrEP to prevent HIV infections. Much of the data now been released shows that by using PrEP, this is taking 1 tablet every day for “high risk” groups, HIV transmission can be avoided in up to 97% of cases. Some studies showed an even higher reduction rate. It is very apparent we have the tools now to end HIV by using this as an option for prevention. However, after having a meeting with a politician from the UK in Melbourne, this same politician is also the current chair of the All Party Parliamentary Group for HIV in Westminster, she openly said that she had never heard of this until the 2 days before when the WHO released the new guidelines for its use. This I find shameful and totally unacceptable from people that are so called “leaders” in the fight against HIV. Young people were also high on the agenda at the conference; however, there was a clear lack of representation of young people at the conference. If we really do want to engage with young people then they must be part of the discussions and involved at all levels. It is no good trying to talk for young people. They are capable of doing that themselves. For the young people who were in attendance, they made a huge impact on different people. Two young people form the Children’s HIV Association (CHIVA) in the UK spoke at one of the symposiums, and they put faces to people. They both spoke incredibly well at what it is like to be a young person who was born with HIV, and the problems that they face. We often forget that these young people have had tremendous losses in their lives, and we often think that everything is ok for them now. What was very apparent for many people in the room was the isolation young positive people often feel: the fear of someone disclosing their status and the label of “promiscuous” being given to them before they have ever had sex. With the advances in medication we have a young generation that are living, and living very well, so it was heart-warming to hear of their stories and how they are growing up with future plans for careers families of their own and as one said, even a pension! During the conference I also took part in 3 radio interviews, one of which was broadcasted live from the conference across Australia and was aimed at young people. The interviewers were all under the age of 25 (there was 4 of them) and the theme of the show was HIV sex and young people. Why did I as an “older” person speak on the show? Well it was quite simple really. The fear of being identified prevented the young people from speaking on the show. This goes to highlight that it’s not HIV itself that is the problem, but it’s the stigma that goes with it that’s the problem. Stigma is still the biggest cause of “illness” to all those that live with the virus. Isn’t it about time we addressed this as
a global community and re-educated the larger populations that HIV is not what it once was, and that people can and do live very healthy and “normal” lifes with HIV? The pledge 90 90 90 that was made at the conference reminded me of the TB epidemic and the lack of will to eradicate TB in the 1950’s 60’s and 70’s. By leaving a 10% of the world population untreated for TB we now have a global epidemic of drug resistant TB, with very few new drugs coming through to treat it. The pledge of 90 90 90 was made so that 90% of people could be diagnosed, 90% treated and 90% undetectable. After this session I was having a conversation with someone from Scotland and said “Why was this not 100% 100% 100%?” the next thing I knew I had been quoted on Twitter saying this…. Let us not make the same historical errors and let us live up to the conference heading of Up-Scaling and no one left behind. With only 90% we are leaving people behind. Let us all on a global scale make a big unanimous push to achieve 100% of tested 100% treated and 100% undetectable so that we really can eradicate HIV from our world. As is very common at these big conferences, there was a lot to see and do and some of the best conversations took place in the corridors or sat away from the hustle and bustle over a coffee. These opportunities are fantastic for asking the questions and having discussions around where do we go next and how do we get there, or what might happen if…. There were some extremely good posters and some fantastic people at the conference and it’s on this note that I would like to take this opportunity to say thank you. Thank you to all the people who over the years have been involved in all manners of ways in the fight against HIV. We are all too often caught up in our daily lives to stop and take a minute and reflect on how far we have come. When I joined the sector many years ago we were dealing with an ultimate death sentence. Palliative care and death were the norm. With the advancement of medication and good education we are now dealing with a chronic illness that can be managed very effectively. People are now having families, working and even hitting retiring age – and making it in a healthy fashion! So remembering those that were lost on route to Melbourne, their families left behind and all of those who have been or still are working within this unique sector, thank you for all your hard work and tireless support to all of those living with or affected by HIV. ■
European AIDS Treatment Group Newsletter - Issue 2 - 2014
Damian Kelly
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POLICY WORKING GROUP
Political leadership for an effective response to HIV and co-infections EATG continues to advocate for sustained attention to HIV and coinfections at European level and international level. A tool of this advocacy is the EU Civil Society Forum on HIV (CSF), which EATG cochairs with Aids Action Europe. In June, the CSF learned that the Italian Presidency endorsed its demand for a review and renewal of the 2004 Dublin Declaration on HIV/AIDS in the EU and neighbouring countries. It also appears that the demand to include for integrating hepatitis C, tuberculosis and sexually transmitted infections has made its way on the European policy agenda. As part of the CSF coordination team EATG is now working with partners to ensure that the Presidency conference of 27-28 November has a long-lasting impact. In July, a reconstituted HIV Civil Society Forum met for the first time in Luxemburg, coordinated by AIDS Action Europe and EATG. The meeting included amongst others discussions around the European HIV policy framework at 2014 onwards, funding mechanisms for the region; collaboration with the CSF on Drugs for UN Special Session on Drugs in 2016 and the EU Italian Presidency event on HIV and coinfections in November and hepatitis C; and civil society advocacy to ensure access to affordable treatment options.
Treatment as part of Prevention (TasP) On 20 July, EATG, NAM Aidsmap and HIV in Europe hosted an interactive community satellite meeting on the margins of the International AIDS Conference in Melbourne, “The Use of Antiretroviral Treatment for Prevention: the role of community, tensions and ways forward”. Speakers and participants examined issues that need to be addressed before the Treatment as Prevention (TasP) can be implemented equitably, efficiently and in accordance with individuals’ wishes and their human rights. Discussion included the need of the community of people living with HIV and those at risk to take ownership of the debate and get involved in guidelines developments to ensure these reflect reality and needs of those affected. The precondition of effective screening and testing strategies was raised and effective access to treatment was underlined. It was also stressed that TasP is not a silver bullet for prevention and that HIV negative people should not rely on TasP. It was noted that problem of transmission during early infection remains. The debate also highlighted the need to look at TasP with other prevention tools and there needs to more discussion on adequate use of pre-exposure and post-exposure prophylaxis. Last but not least doubts were expressed for feasibility and effectiveness of Prep and TasP at the current cost of drugs. ■
As co-chair of the CSF, EATG also took part in the working group meeting of member states representatives, the European Commission and agencies. Agenda items included the input into proposed EU joint action on prevention and harm reduction, the EU presidency event on HIV, future policy framework, drugs trends and monitoring. EATG presented on the result of the 2013 European HIV Testing Week and plans for 2014.
Access to medicines On 28 July, World Hepatitis day, and in advance of the Italian EU Presidency meeting on access to medicines and innovation and the informal Council of EU health ministers in September, EATG together with the EU HIV Civil Society and a number of HCV related organisations, sent a letter to EU health ministers and heads of pharmaceutical companies requesting they take the measures necessary to ensure access to new effective hepatitis C treatments.
European AIDS Treatment Group Newsletter - Issue 2 - 2014
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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