AIDS Action Europe (AAE) is a comprehensive NGO network in the field of HIV/AIDS with over 440 network members and partners from all over Europe and Central Asia. It is a unique player with substantial added value for European policy making and programme implementation.The leading principle of AIDS Action Europe’s multiannual Framework Partnership Agreement 2015 – 2017 is continuity and innovation. The programme described in this proposal will follow up on achievements since the start of AAE in 2004 and will extend its agenda with activities aimed at optimising the EU’s response to the HIV/AIDS epidemic and strengthening the AAE network. In the area of policy, AAE will keep its focus on the coordination of the EU Civil Society Forum on HIV/AIDS and on contributing to the EU Think Tank, so that the voices of AAE members and other members of civil society are heard.In the field of linking and learning, AAE will continue investing in its Clearinghouse, as a database for exchanging good practice and sharing information. Website, social media, newsletters and mailings will remain key means to disseminate news and information. AAE strives for innovation and is determined to improve communication, linking and learning, and exchange of good practice: - The Clearinghouse is of great value for AAE members and beyond; it will be re-launched in the coming project period. Its contents will be re-structured to intensify linking and learning. Furthermore, it will be transformed into an interactive platform for information and opinion exchange.- The AAE website will be re-designed in order to improve information distribution troughout the region.- The bilingual communication efforts will be intensified to reach member organisations in Russian speaking countries more effectively.- Consultancies, working groups and project development meetings will provide opportunities to address emerging issues at country, regional and European level and to stimulate European cooperation.
AIDS Action Europe (AAE) is a comprehensive NGO network in the field of HIV/AIDS with over 440 network members and partners from all over Europe and Central Asia. It is a unique player in the field with substantial added value for European policy making and programme implementation.
Under the leading principle of AIDS Action Europe’s multiannual Framework Partnership Agreement 2015 – 2017 “continuity and innovation”, objectives and activities in 2015 were planned and implemented in order to optimise the EU’s response to the HIV/AIDS epidemic, to strengthen civil society’s contribution to a more effective response to the HIV epidemic and to strengthen the AAE network.
In this context, three specific objectives framed AAE’s work in 2015:
(I) Civil Society’s contributions to regional and national HIV/AIDS policies and programmes are effective and meaningful,
(II) a strong and effective working network is established by improved collaboration, linking and learning, and good practice exchange related to HIV/AIDS among NGOs, networks, policy makers and other stakeholders
(III) the functioning of the network by optimised internal management processes is ensured.
Furthermore, based on the problem analysis and evidence described in the Framework Partnership Agreement application, in 2015 the AAE Steering Committee decided to address three core problem areas. All three topics are on the agenda of the HIV/AIDS Civil Society Forum and need to be attended to at a broader working level in order to reach AAE’s general objective to contribute to a more effective response to the HIV epidemic in Europe and Central Asia:
a) Improved access to HIV services for all those who have limited access due to legal obstacles
Access to healthcare for migrants in an irregular situation (also known as ‘undocumented migrants’) who are living with HIV was the thematic area of a pilot project with five countries of the European HIV Legal Forum (EHLF) in 2012. Quantification of irregular migrants living with HIV remains difficult if not impossible. In the framework of the pilot project two attempts at estimating were conveyed by the national focal points: In Italy 40.000 to 50.000 migrants with HIV are estimated to live with one third being irregular (10.000 to 15.000). In England an extrapolation from a robust 2004 clinic survey assessed just over 1.000 irregular migrants living with HIV. Although quantification out of obvious implicit difficulties is not significant, policy makers consider the challenges undocumented migrants with HIV face as serious, not only for the health of individuals but also for larger public health. Moreover, the results of the survey provided valuable insights into the differences of how health systems are structured and financed, and its effects on access to treatment and services for migrants with irregular status.
b) Affordability of medicines, specifically regarding HIV and hepatitis C treatment.
Low coverage rates of people who need HIV treatment remain challenging, in particular in Eastern Europe and Central Asia. According to the last WHO European Region report of 2013, only about a third (35 %) of the people who needed antiretroviral treatment in 2012 was receiving it. Apart from procurement irregularities and low diagnostic rates, high prices, TRIPS inflexibilities and cuts in health service budgets are identified as barriers to a more comprehensive coverage. AAE’s activities in 2015 contribute to the UNGASS target to scale up ART coverage to at least 80 % and reduce transmission of new HIV infections. Regarding hepatitis C, advocacy for affordability of treatment needs to address two, region-related challenges: While in Western countries new effective medicines come on the market but prohibitive prices impede their accessibility, in South East European and East European countries, even access to interferon based medication remains exclusive. Both obstacles need to be tackled at regional and nationa
I.1 The HIV/AIDS Civil Society Forum
The HIV/AIDS Civil Society Forum is an advisory body to the EU HIV/AIDS Think Tank. Two annual meetings, constant exchange between the CSF coordination team members via mails and conference calls, the CSF Facebook page (HIV Europe Policy) and email exchange with the CSF members through the CSF mailing list are methods to ensure the functioning of the CSF. Advocacy initiatives are implemented by writing letters and statements, by outreach to national and European stakeholders as well as by information and briefs to external stakeholders. Results and reports of the CSF meetings and advocacy activities are published on the AAE website.
I.2 Contribution to implementation, monitoring and evaluation of European HIV policy
The EU HIV/AIDS Think Tank provides the platform to share Civil Society’s perspectives and positions on EU policies. Six members of the CSF participate one day in the biannual meetings of the Think Tank, report from the CSF meetings and ensure that Civil Society’s voices are being heard. Furthermore, policies and guidelines from stakeholders are reviewed and given input to in the process of their preparation if required.
I.3 European HIV Legal Forum (EHLF)
The EHLF is a project implemented by AAE to facilitate access to HIV prevention, care and treatment for migrants in an irregular situation. Desk research to provide an overview of relevant EU laws and policies, a developed survey instrument for the national policy survey in ten countries and a subsequent report with case studies illustrative of the issues for each country, building of and maintaining a network of legal experts and NGO policy leads, linkages with other pan-European organisations working on legal and/or policy issues with healthcare workers, community based organisations, people with HIV, and/or policy and lawmakers, produce a legal section on the AAE Clearinghouse that serves as a repository of advocacy materials and good practices, an advocacy tools for NGO in order to help advocate for universal access to HIV prevention, treatment, care and support on a local/national level, locally-relevant good practice guidance for healthcare workers on how to ensure that they provide rights based, stigma-free care to people with HIV as well a legal and rights literacy for PLWHIV and a partner meeting were the means and methods to achieve the objectives with regard to the EHLF.
I.4 Advocacy for CS concerns regarding European policy initiatives
Participation in key European events, to deliver key speeches and other contributions and provision of reports considering this events on AAE media are the instruments to give Civil Society a voice.
I.5 Support and facilitate national and regional advocacy efforts
The implementation of consultancies on Community Based Testing Outside Medical Settings and on Affordability of Medicines and to report about them were used methods related to this topic.
II.1 Offer improved bilingual (En/Ru) good practice exchange and information
The Clearinghouse is a useful and needed tool to exchange good practice and information. To improve this database it was profoundly re-launched.
II.2 Intensify communication
Social media like Facebook, Twitter and VKontakte were used to inform and spread news about AAE’s activities
II.3. Communicate bilingually with AAE network
The AAE website, newsletters and tailor-made mails were means to communicate with AAE members. Also printed publications as the AAE Strategic Framework were used.
II.4 Initiate and create partnerships on EU HIV policies related projects and promote linking and learning through collaboration with members/partners/(EU)projects
Monitoring relevant calls for tender, informing member and partner organisations and working group meeting and reports were applied as methods regarding this objective.
III.1 Guarantee overall governance by AAE SC
Conference calls, face-to-face meetings, minutes and reports, communication v
Objective I: Civil Society’s contributions to regional and national HIV/AIDS policies and programmes are effective and meaningful
On July 6 and 7, the Civil Society Forum (CSF) was held in Luxembourg and six CSF members attended the Think Tank meeting on July 7 and 8. Relevant policy developments such as the introduction of self-testing in the UK, the findings and further development of Pre-Exposure Prophylaxis in regard of the PROUD and IPERGAY trials, specific concerns of HIV and women, recent progresses of the “Quality Action – Improving HIV prevention in Europe” Joint Action, Prevention among Youths and the implication of geo-spatial applications in prevention among MSM and prevention needs of travelling gay men were discussed. Also, the findings of the START study and affordability as a key obstacle to scaling up treatment were part of the discussion of the forum. During the Think Tank meeting the need for a new policy framework, following the 2016 expending Action Plan was brought to attention and discussed. The CSF members indicated great satisfaction with the organisation and implementation of the CSF.
The second Civil Society Forum Meeting took place on November 23 and 24. Six CSF representatives participated in the Think Tank meeting on November 25. Very prominently the future of a policy framework was discussed during the CSF Meeting. Moreover, needs, challenges and strategies to support CSO in EECA countries under participation of the UNAIDS EECA Regional Office Moscow via a conference call and preliminary results from the AAE project on Migrants with irregular status were on the agenda. The second day included an update on Harm Reduction Policies with regard to the UNGASS meeting on Drugs preparations, country reports on Community based voluntary counselling testing (CBVCT) from Italy, Portugal and Finland and key speeches on Access to Directly Acting Antivirals (DAA). In both CSF meetings the recurrent agenda points Update from the Chairs, from the Commission, from the Agencies and regarding the Upcoming EU-presidencies were discussed.
CSF members contributed to the Think Tank meeting, not only with regard to the report from the CSF meeting but also sharing opinions and perspectives in the discussions related to the topics of the agenda.
All CSF related activities were prepared and implemented in close collaboration with EATG. The cooperation, not only with regards to CSF, has been strengthened and helped broadening and improving AAE’s advocacy role as well as it increased visibility of AAE. In this context, several advocacy activities have been initiated by the CSF in cooperation with EATG and AAE by itself:
o A letter to Czech Public Health authorities to withdraw mandatory testing regulations for key populations in joint efforts with the European Commission and European agencies. Another letter on this matter was also sent to Commissioner Andriukaitis in request for support and was answered by the Commissioner on May 29.
o A letter to the Latvian Cabinet of Ministers to acknowledge international treatment guidelines and raise the threshold of treatment initiation, set at 200 CD+ T-cell count.
o A letter to President Juncker to support an integrative approach for HIV, viral hepatitis and tuberculosis in order to diminish health threats due to these infectious diseases in the European Union and Neighbouring Countries. In September, AAE received an acknowledgement of receipt of the letter sent to Commissioner Juncker by the Secretariat-General, informing that the letter was transmitted to the Mr. Vytenis Andriukaitis, responsible for Health and Food Safety. In October Commissioner Andriukaitis replied reassuring that addressing HIV/AIDS, TB and hepatitis in a single integrated policy framework, the Commission is considering all options on how best to tackle these diseases, also taking into account the new legal context created by Decision 1082/2013/EU and the mechanisms it established. The letter a
Framed by our mission, vision, guiding principles and core values, AAE’s general objective in Europe and Central Asia is to strengthen civil society’s contribution to a more effective response to the HIV epidemic. AAE is striving for reduction of health inequalities, focusing on most at risk populations and the epidemic in Eastern Europe and Central Asia.
Due to AAE’s activities in the HIV/AIDS Civil Society Forum and the contributions to the HIV/AIDS Think Tank, Civil Society needs, concerns and perspective were reflected in European HIV policies in 2015. Advocacy for a new policy framework for Combating HIV/AIDS in the European Union and Neighbouring Countries in particular, was initiated in order to assure sustainability of policies where people living with/affected by HIV, viral Hepatitis and Tuberculosis are involved. The target group addressed consists of members and partners of AAE as well as policy makers and decision makers. The integrative approach is taken up positively by the European Commission.
AAE through its EHLF built the ground to facilitate activities for improved access to HIV services for all those who have limited access due to their residency status. This will not only diminish negative consequences for individuals but also impact the public health burden at national and EU level in the long term, as findings of the National AIDS Trust have proven for England. Members of the EHLF started using good practice for advocacy activities in their countries, for instance in Germany where the National AIDS Trust example and the EHLF findings were presented in a conference attended by policy makers and health care providers.AAE’s activities regarding affordability of medicines with the development of a training manual for advocacy will help to broaden the coverage of treatment rates throughout the region and reduce the incidence of AIDS cases. They also diminish HIV incidence due to the preventive effect of antiretroviral medication. Advocacy in terms of affordability of hepatitis C treatment supports accessibility to very potent drugs with high curing rates. This is specifically important to those people who do not benefit from interferon based treatment. However, in most countries of South Eastern, Eastern Europe and Central Asia interferon based treatment of hepatitis C has to be made available to a greater portion of people in need in order to reduce the burden of the epidemic. The manual will be used in regional trainings in 2016, attended by members and partners as well as by individuals and groups that are particularly affected by and vulnerable to HIV/AIDS, with a specific focus on people living with HIV (PLHIV).
Community based VCT outside medical settings helps to initiate treatment and care for those who should be treated and raise awareness in terms of individual risk management. This will have a long range diminishing effect on incidence and prevalence for, HIV, hepatitis C and STI. The activities so far reached members and partners from academia and CBVCT facilities.
In particular, key populations need low-threshold access to prevention, treatment and care. Stigma and discrimination are barriers that impede this access. Criminalisation of key populations is fuelling stigma and discrimination. AAE advocated at cross-sectional level for the rights of key populations and contributed to fairer, inequality reducing societies with its communication and social media activities, its participation in joint actions such as Quality Action and HA-REACT and in coordinated strategic approaches with other stakeholders in order to reduce health inequalities and social disparities and to promote sustainable development.
Objective I: The activities were implemented as planned with two CSF meetings conducted and the participation in and contributions to the Think Tank. Furthermore, plenty of advocacy activities were undertaken in collaboration with AAE partners. In particular, the efforts tackling compulsory testing in the Czech Republic and raising the initiation marker for treatment in Latvia were effective. The activities addressing a new communication as policy framework from 2017 onwards started in 2015. However, the future of a policy framework is still under discussion and further efforts are needed to maintain a strong commitment by the Commission in the response to HIV, tuberculosis and viral hepatitis in Europe. Nevertheless, preliminary discussions and activities show a common understanding of an integrative approach to respond to all three communicable diseases not only as co-infections but also as mono-infections, an approach that Civil Society has been advocating for during the last years.
AAE’s activities regarding the EHLF, affordability and pricing of medicines and CBVCT will show their outcomes in line with related and to be implemented activities in 2016.
Overall, 58% of responding member organisations claimed, that AAE has been a gateway to drive forward advocacy for HIV policy change while 20 % responded that AAE has not and 22 % said that they could not tell. This is very close to the advised 60 % that were envisaged to reach as an indicator for the outcome in Objective I.
Objective II: The re-launch of AAE’s Clearinghouse was the core work of 2015 AAE Communications activities. The impact of the re-launch should result in an increase of up- and downloads and interactive communication that will manifest itself from 2016 on. However, already for 2015, 75 % of the responding member organisations claimed that the Clearinghouse and the AAE website provide (7 % said they do not and 18 % could not tell) useful information. Moreover, 76 % of the responding members stated that the information on the website and in the Clearinghouse is in particular useful for regular information exchange, knowledge sharing and networking (11 % stated that they do not and 13 % could not tell). Although, the applications for different projects and activities were not successful, AAE could prove that the office is monitoring calls for tenders constantly, is informing its membership and facilitates with regard to application writing. In the long run this, in line with the activities on affordability and a project directed to gay men and other men who have sex with men, should also influence the strength of the network. In general, the inclusion of member and partner organisation in AAE’s work through working groups increased the visibility of AAE and strengthened the identity with the network.
Objective III: With all the activities implemented with regard to Objective III, the implementation of the work plan, governed and overseen by the AAE Steering Committee was successful. A survey, addressed to the Steering Committee members showed the satisfaction with the implementation so far. Out of the 8 SC members, 6 responded (one was not available during the survey implementation). All six were very satisfied with the management of the 2015 operating grant and also very satisfied with the organisations of meetings, teleconferences and the provision of related documents. Moreover, 4 rate to be very well informed about the implementation of projects, 2 well informed along with the same results regarding the re-launch of the Clearinghouse. Compared to 2014, 3 find the visibility of AAE in 2015 higher, 2 much higher and 1 SC member could not tell. All six responding SC members state that they are highly motivated to work in the AAE Steering Committee.
The reports of meetings and working groups, such as the CSF meeting reports, the SC meeting reports, etc. were published on the AAE website. In the AAE newsletter, sent to the subscribers, it was reported about advocacies efforts, conference news and contributions. The CSF Facebook site “HIV Policy in Europe” was used as an interactive discussion forum.
The evaluation was conducted internally with the help of an evaluation matrix that facilitated reporting to the activity, output and outcome related indicators.