Improving Outcomes for People Living with HIV

2136950249_b3e5f6a6fa_bThis is a call to action for European governments, international organisations, patient organisations, and the wider health community to align on a new HIV policy agenda that addresses the crucial unmet needs of people living with HIV (PLHIV) – to ensure they can live longer in good health, and participate fully in society and the economy.

Current HIV policy frameworks rightly focus on prevention, diagnosis and effective treatment (viral suppression), but do not go beyond this to address other health and social challenges faced by PLHIV. In Europe, where viral suppression should increasingly be the norm, it is vital that policy makers and healthcare providers recognize these challenges and respond.

An integrated approach is needed to improve:

  • Health outcomes – by addressing the increased risk that PLHIV will develop other medical problems (co-morbidities) – including mental health issues.
  • Social outcomes – in particular by combating stigma and discrimination, and ensuring that PLHIV are able to secure and retain employment and housing.

Effective action to improve outcomes, and reduce the health burden and costs associated with HIV, can bring meaningful economic benefits and reduce demands on European healthcare systems.

We call on the EU and Member States to:

1. Revisit the Dublin Declaration on Partnership to Fight HIV/AIDS, and ensure that its monitoring adopts a ‘life-long’ approach to the health and social inclusion of PLHIV.

2. Identify and agree on policy indicators necessary to monitor and assess country performance in improving health and social outcomes for PLHIV.

3. Adopt in 2017 an integrated EU Policy Framework on HIV/AIDS, viral hepatitis and TB – thereby extending the focus of the EU Action Plan on HIV/AIDS, which comes to an end in 2016.

Background

Whilst important progress has been made in the global response to HIV/AIDS, with the European Union (EU) playing an instrumental role, the European region – and in particular Eastern Europe – now has the fastest growing HIV epidemic globally. 29,992 people were diagnosed with HIV in the EU/EEA in 2014. At the same time, PLHIV are living longer, which has created new challenges relating to the prevention, treatment, and management of co-morbidities.

With the EU Action Plan on HIV/AIDS expiring at the end of 2016, and the Dublin Declaration on Partnership to fight HIV/AIDS now more than a decade old, European governments and the EU institutions have an opportunity to make progress on their political commitment to fighting both the transmission of HIV, as well as its health and social impacts – including the Sustainable Development Goals (SDGs).

Continuing challenges include the strengthening of prevention programmes, reducing late diagnoses, ensuring equity and universality of access, and the social consequences of HIV that stem from stigma and discrimination. Governments and health systems must respond to the fact that PLHIV are living longer. We must ensure that PLHIV remain in good health as they grow older, and can lead successful, productive and rewarding lives. This aspiration should motivate the HIV response in all European countries – not only those that already perform well in relation to the UNAIDS targets for diagnosis, treatment and viral suppression.

The Beyond Viral Suppression Initiative

The Beyond Viral Suppression initiative arises out of a shared recognition among leading HIV experts that there are crucially important issues relating to the health and social inclusion of PLHIV that have to date received insufficient attention from policy makers and healthcare providers, and which must now form part of our HIV response.

In an era when ageing populations and health system sustainability are central challenges for all European countries, the initiative will also aim to inform debates about cost-effective strategies for co-morbidity prevention and management, whilst ensuring patient-centered healthcare delivery. Our recommendations should therefore be of high relevance both to policy makers and the wider health community.

The steering group is co-chaired by: Nikos Dedes, the Founder of Positive Voice (the Greek association for PLHIV) and a Board member of the European AIDS Treatment Group (EATG); Professor Jane Anderson of Homerton University Hospital NHS Foundation Trust in London; and Professor Jeffrey Lazarus of ISGlobal, Hospital Clínic at the University of Barcelona, and CHIP, Rigshospitalet, University of Copenhagen. The initiative is enabled by sponsorship provided by Gilead Sciences and ViiV Healthcare.

The initiative is developing a performance assessment of HIV services ‘beyond viral suppression’ – focusing on: access to appropriate health services; health outcomes – co-morbidity and co-infection prevention, and health-related quality of life; and social outcomes.

A research team supported by a study group of leading academics will seek to identify the policy indicators necessary to assess countries’ performance at improving health and social outcomes ‘beyond viral suppression’. Our aim is thereby to complement the work of other initiatives focusing on HIV prevention, diagnosis, and access to high quality treatment and care.

People with HIV are Living Longer but Still Face Many Challenges

2073016443_fc28f379e1Brussels, 7 December 2016: The substantial increase in life expectancy for people living with HIV (PLHIV) is a hugely important achievement. However, PLHIV continue to face significant health related challenges which are in urgent need of attention from policy makers and the wider health community. A new initiative, ‘HIV Outcomes: Beyond Viral Suppression’, today launched a campaign to highlight and address these challenges, which include co-existing physical and mental health conditions (that PLHIV are at higher risk of developing), and social inclusion – which continues to be undermined by stigma and discrimination.

The initiative, which features high profile patient representatives, clinicians, academics, and industry, wants health systems and HIV policy frameworks to take account of these diverse challenges, so that PLHIV gain access to the necessary health and support services in order to live long and well.

‘HIV Outcomes: Beyond Viral Suppression’ seeks to complement other HIV initiatives focusing on prevention, diagnosis and access to effective care, where there are global targets for the HIV response but much work remains to be done. The initiative also builds upon the WHO Global Health Sector Strategy on HIV, 2016-2021, which highlights the need for PLHIV to have access to chronic care, but does not provide specific objectives or targets in that area.

Speaking ahead of the launch event in Brussels today, Nikos Dedes, Co-Chair of the HIV Outcomes: Beyond Viral Suppression Steering Group, said: “Current HIV policy was not conceived with ageing in mind, but living long term with HIV creates its own specific needs. The policy environment must adapt to recognise, measure and address these needs.”

Professor Jeffrey Lazarus of ISGlobal, Hospital Clínic at the University of Barcelona, is leading a study group composed of HIV and health system experts in order to assess the performance of health systems in addressing the challenges highlighted in this initiative. Lazarus presented an interim report at today’s launch event.

The campaign comes at a watershed moment for HIV/AIDS policy with the EU’s Action Plan set to expire at the end of this year. The Initiative seeks to encourage the European Commission to adopt a new integrated framework on HIV, viral hepatitis and tuberculosis that can provide a coordinated response to these threats. The Steering Group also wants to see the European monitoring framework on HIV (based on the 2004 Dublin Declaration) expanded to reflect new and ongoing health and social needs of PLHIV.

Today We Celebrate 15 Years of AFEW!

15yearsafew_logo_proposal2Dear AFEW supporters and partners!

Today is a very important day for AFEW International. We are honouring World AIDS Day 2016, and also celebrating the 15th anniversary of our organisation. We are very grateful that we have spent these wonderful 15 years with your support and appreciation, and we would like to thank you for this!

We know that 15 years of our work would be not possible without you. We understand that together with you we are working towards a healthy future of our region. We realize the potential and current issues of Eastern Europe and Central Asia, and we are confident that we will be able to overcome them together with you. Thank you for being with us throughout our successes and challenges!

Having a leading position with expertise in HIV, TB and other related public health concerns in Eastern Europe and Central-Asia, AFEW will continue fighting stigma and discrimination, upholding the human rights, and improving the access to and quality of health services for key populations at risk for HIV, TB and viral hepatitis. This is still so much needed as the region where we work is still experiencing HIV growth, faces increased incidence of MDR-TB and has a high prevalence of Hepatitis C. Our activities help to change the future of the region and contribute to a healthy and comfortable life of people!

Thank you for being with us!

Happy World AIDS day and happy AFEW anniversary!

Sincerely,

AFEW International

Community-Based Participatory Research: Call for Proposals

img_0902AFEW International in partnership with Flowz and in consultation with the Global Network of People living with HIV and the Eurasian Harm Reduction Network is managing a small grants fund to support community-based participatory research (CBPR) projects in Eastern Europe and Central-Asia (EECA) region. The purpose of the community based participatory research small grants fund is to:

  • Increase CBPR research capacity in the EECA region,
  • Increase the body of CBPR research in the EECA region,
  • Support increased visibility and presence of CBPR from EECA at the International AIDS Conference 2018, which will be held in Amsterdam, The Netherlands. Note: The selected CBO’s for the small grants fund are expected to submit an abstract for AIDS2018.

The small grants fund is part of a wider programme to build the research capacity of community based organisations in EECA region and increase meaningful participation of the region at the AIDS2018.  The Dutch Ministry of Foreign Affairs gives financial support to the programme.

As a first step, a CBPR training took place in Bishkek, Kyrgyzstan in November 2016. 24 participants representing key populations and people living with HIV CBO’s from 11 countries across the EECA region attended this training. These 24 participants were selected from an applicants’ pool of more than 200 applicants.

Criteria for participant selection for the training were among others:

  • Based in Armenia, Azerbaijan, Belarus, Georgia, Kazakhstan, Kyrgyzstan, Moldova, Russia, Tajikistan, Turkmenistan, Ukraine or Uzbekistan,
  • Community based organisation and working with one or more of the following key populations: drug users, LGBTI, sex workers, or with people living with HIV,
  • A representative regional spread.

Following the training, participants will be able to access online training modules to further shape their research skills. These modules are also accessible for the training applicants who could not be accommodated for the training.

Overview of all CBPR project activities (2016 – 2018)

  • Call for proposals for small research grants (Dec 2016)
  • Selection research projects (Jan 2017)
  • Grants administration and dissemination (Feb 2017)
  • Research projects (Feb 2017 – Fall 2017)
  • Online modules for certification (Nov 2016 – April 2017).
  • Webinar on Data Analysis (late Spring/Summer 2017)
  • Workshop on Dissemination and Abstract Writing for up to 25 participants (Fall 2017)
  • Workshop on Presenting research findings for up to 25 participants (Spring 2018)
  • International AIDS Conference 2018, Amsterdam, the Netherlands (July 2018)

Call for proposals small grants fund

It is expected that grants awarded will be between € 5.000 and €10.000 (maximum).

Applications are strongly encouraged from the 24 training participants and requested only from the training applicants pool, no wider circulation.

Applications will need to be received by January 16th 2017.

Applicants will be informed on the outcomes of their application by the end of January 2017 or early February 2017.

Eligibility criteria for the call for proposals for community based participatory research

An applicant should:

  • Be a participant of the CBPR training held in November 2016, or training applicants, who could not be accommodated for the training
  • Be an organisation based in Armenia, Azerbaijan, Belarus, Georgia, Kazakhstan, Kyrgyzstan, Moldova, Russia, Tajikistan, Turkmenistan, Ukraine or Uzbekistan,
  • Be a community based organisation (CBO),
  • Be working with one or more of the following key populations: drug users, LGBTI, sex workers, or with people living with HIV,
  • Ensure that their application is able to demonstrate the meaningful and active participation of the community in the research, i.e. that it is truly community based and participatory,
  • Ensure that their research topic relates to HIV/AIDS (includes sexual health, TB, viral hepatitis, psychosocial aspects, treatment adherence, etc.),
  • Ensure that their application is focussed on explanatory, causal or intervention research. Meta analysis or policy analysis are NOT the purpose of this small grants fund.

The applications to the Small Grant CBPR proposals should be submitted online and in Russian or in English. If you are eligible for the call, please click here to start application.

AFEW Director is the Chair of TB/HIV Working Group

ankeAFEW executive director Anke van Dam became the chair of Wolfheze Working Group on TB/HIV collaborative activities. The group will document and promote the best models and identify research priorities of integrated TB/HIV care in the European region. Members of the group will also identify barriers in TB/HIV services and collaboration.

“I am very honoured to be part of the group,” – Anke says. – “AFEW is implementing integrated HIV/TB activities in the EECA region for quite some years now. I will bring this experience into the group, and hope to contribute to collecting best models. There is still so much to gain in improving the care and health of people living with both HIV and TB.”

Wolfheze TB/HIV Working Group started a year ago in The Hague, The Netherlands. There, Wolfheze and WHO National TB Programme Managers’ meeting participants discussed the need for strengthening TB/HIV collaborative activities in the context of the WHO End TB Strategy. They agreed to create a Working Group on TB/HIV collaborative activities taking into account specific challenges and opportunities in the WHO European region.

Irina Used Drugs and Became a Social Worker

irinaIrina Starkova started to use drugs in 1980’s in Osh city in Kyrgyzstan. She tried all the drugs that were available at that time starting with opium, ephedrine and finishing with heroin. She began to use drugs with her husband who was just released from prison.

In 1983, Irina gave birth to a son. “I was happy, but even that did not stop me from drug usage. I couldn’t imagine life without drugs, – Iryna says. – In 1990, I was imprisoned for the first time. After that, I was imprisoned for three times more. In total, I was in detention for almost 11 years, and it was all for the drug use.”

Thus, her son grew up mostly without his mother. Irina’s parents were raising him up. In 2000, she was visited by a specialist from the AIDS Center. He took her blood for HIV testing, and a week later Irina got to know that she was HIV positive. At that time, she had very little information about her diagnosis. “I didn’t know how to live and was afraid of people and relatives condemn, – she remembers. – But I began to shoot up even more drugs. I thought that I will die soon because of HIV…”

Nine years ago, when she was released from prison for the last time, her mom and son got to know that Irina was HIV positive. Their reaction was very unpleasant: Irina’s son said that he did not need a mother, and that she was his shame, and her mother was afraid to live with her in the same apartment. Therefore, Irina was forced to leave to Bishkek, the capital of Kyrgyzstan.

In Bishkek she also found heroin, and it all lasted until she went to rehabilitation in NGO “Ranar” where she got helped. “I don’t use drugs for 9 years already, – she says. – In 2009, I was tested for HIV one more time and I found out that I am healthy and I have no positive status. They explained me that this was an erroneous result. I did not know whether to laugh or cry, because all these years were a nightmare for me. What would have my life been if I knew that I was not sick…”

When Irina went back to Osh, she visited women center “Podruga” (“Girlfriend” in Russian) to receive their services. “Podruga” was established to combat HIV, AIDS and STIs in the Kyrgyz Republic among vulnerable groups. The organization is also is active in HIV/AIDS advocacy and human rights. Now, for three years already, Irina is working in the organization as a social worker. She helps women who use drugs.

Join AFEW in the European Networking Zone in Durban

thumb_homepage_mobile_appOnly several days are left until the start of the AIDS 2016 Conference that this year is held in Durban, South Africa from 18 to 22 July. AFEW will be present at the conference with its own booth where everyone can leave a wish to be taken to the 22nd International AIDS Conference in Amsterdam, the Netherlands in 2018.

AFEW booth is situated in the European Networking Zone (ENZ) that is hosted by The European AIDS Treatment Group (EATG), AIDS Action Europe and ECUO. ENZ is part of the Global Village, a space where activists and researchers from the community in Europe will present their work and projects.

Several AFEW activities will be taking part in the European Networking Zone. On July 19 Anke van Dam, AFEW’s Director, will host a question and answer session about the road to AIDS 2018 starting at 15:00 at AFEW booth. Dutch Ambassador for Sexual and Reproductive Health and Rights & HIV/AIDS Mr. Lambert Grijns and UN Secretary-General Special Envoy on HIV/AIDS in Eastern Europe and Central Asia Mr. Michel Kazatchkine will be taking part in it. On Thursday, 21 July Anke van Dam will tell about the migrants in Eastern Europe and Central-Asia during “Migrants and Access to Health” panel that will start at 16:00. Click here to view and download the program of the ENZ: IAC2016_ENZ_Programme_small

You can follow the updates from AIDS 2016 Conference on our Facebook and Twitter pages.

AFEW Takes Part in 21st International AIDS Conference ‘ACCESS EQUITY RIGHTS NOW’

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AIDS Foundation East-West (AFEW) is taking part in 21st International AIDS Conference (AIDS 2016), on 18-22 July 2016 in Durban, South Africa. Visitors of AFEW booth in EUROzone of the Global Village will have the opportunity to leave a wish to be taken to the 22nd International AIDS Conference that will take place in 2018 in Amsterdam, the Netherlands.

“I am very glad to welcome our colleagues and friends to AFEW booth, – said Anke van Dam, executive director of AFEW. – We would like to share the results of our work in Eastern Europe and Central Asia and also invite them to come to the next conference in Amsterdam. AFEW is asked to engage EECA in the AIDS 2018 conference, and for us it is very important that many people from the region will be present to show their key activities there.”

On July 19 Anke van Dam will host a question and answer session about the road to AIDS 2018 starting at 15:00 at AFEW booth. Dutch Ambassador for Sexual and Reproductive Health and Rights & HIV/AIDS Mr. Lambert Grijns and UN Secretary-General Special Envoy on HIV/AIDS in Eastern Europe and Central Asia Mr. Michel Kazatchkine will be taking part in it.

On Wednesday, 20 July the executive director of AFEW will talk about youth friendly services in Ukraine at an expert panel that will discuss activities for young key populations at 11:30. On Thursday, 21 July Anke van Dam will tell about the migrants during “Migrants and Access to Health” panel that will start at 16:00 in the EUROzone in the Global Village.

AIDS 2016 conference in South Africa will focus on the latest issues in HIV science, policy and practice and will also seek to share key research findings, lessons learned, best practices, as well as identify gaps in knowledge. The conference will feature abstract-driven sessions, a daily plenary session, a variety of symposia sessions, professional development workshops, and independently organized satellite meetings. In addition, the programme will include a number of activities, such as the Global Village and the Youth Programme, which are an integral aspect of the International AIDS Conference.

“Kyianka+” has got additional funding

5_Interview-of-Vera-Varyga-for-pressSelf-help group for HIV-positive women in Kyiv, Ukraine “Kyianka+” (transl. as “Kyiv city woman”) has got additional funding from Gilead Sciences Europe Ltd and continues its active work under the project “Expanding immediate intervention model to ensure adherence to HIV and hepatitis C (“HCV”) treatment and improve quality of life for HIV positive women in Kyiv” to the full extent.

Starting from June 2016, the telephone hotline and on-line support via secretive Facebook group has been supplemented with additional self-help group activities. Thus, HIV-positive women of Kyiv city once again will be able to participate in the workshops and trainings on the different important aspects of living with HIV, including prevention of opportunistic infections and aging issues, study at the vocational courses for further employment, visit psychologist and simply spend their leisure time nicely and usefully in the company of like-minded women.

Let us remind you that self-help group “Kyianka+” was created in September 2014 as a result of collaboration between AFEW-Ukraine, Kyiv city branch of All-Ukrainian Network of People Living with HIV/AIDS and Positive Women of the World (PWW) in order to support and empower HIV-positive women in the Kyiv city.

Telephone hotline to support HIV+ women in Kyiv, Ukraine: +38 (067) 239 69 36