Online Compendium of Good Practices for the Long-Term Health of People Living with HIV Launched

Professor Jeffrey Lazarus (on the right) of ISGlobal, Hospital Clínic at the University of Barcelona. His scientific work includes leading the HIV Outcomes: Beyond Viral Suppression, the European Hep-CORE and the Hepatitis Continuum of Care consensus studies

HIV Outcomes today, on 27 November, launches an Online Compendium of Good Practices for securing the long-term health and well-being of people living with HIV.

Although people with HIV can now anticipate near-normal life expectancy, there are unique needs that must be met if their quality of life is to match that of the general population. As life expectancy for people with HIV has increased, additional unmet requirements for good long-term health and well-being have emerged.

The launch event in the European Parliament today highlights the key findings underpinning the Compendium and emphasises what makes these good practices important to people with HIV. The Compendium represents the latest output from work of the HIV Outcomes collaboration, building on the group’s road-testing of its 2017 recommendations on the long-term health, well-being and chronic care of PLHIV in Italy and Sweden this year. Looking at ways to apply the recommendations in real-world settings has provided vital insights into how to ensure they are taken up more widely. The Compendium is a resource that will inspire and support key stakeholders across Europe to meet the specific care needs of people living with HIV for the long-term.

“We cannot afford to be complacent; improvements in life expectancy for people with HIV need to be matched with improved life quality,” said Nikos Dedes, Chair of the European AIDS Treatment Group and Co-Chair of the HIV Outcomes Steering Group. “We know, from the preliminary work in Sweden and Italy, that these recommendations have the capacity to make a real difference. We need to do whatever is necessary to implement these recommendations and make sure that people with HIV in every country can benefit from this knowledge.”

During the event, co-hosted by Members of the Parliament (MEPs) Christofer Fjellner (EPP, Sweden), Karin Kadenbach (S&D, Austria) and Frédérique Ries (ALDE, Belgium), speakers will stress that the needs of people living with HIV go far beyond suppression of HIV. In a joint statement, the three MEPs from across the political spectrum said: “This is a timely reminder that there is more to life with HIV than viral suppression; proper quality of life is equally important. Now that we know what is needed, it is our duty as policymakers to press for changes to secure the long-term health of people living with HIV.” Given the upcoming European elections, the support of such a wide range of MEPs will be essential to keep the needs of people with HIV on the political radar.

During 2018, HIV Outcomes ensured that the recommendations launched last year have been fully tested and are implementable. Having identified the barriers to be overcome, in 2019 the initiative will focus on implementing the relevant recommendations in Italy and Sweden and will work to broaden the roll out of the recommendations across Europe.

For those diagnosed and treated early, HIV is now a long-term, rather than a fatal, condition. HIV Outcomes’ recommendations have been designed to address the needs generated by today’s increased life expectancy, looking to improve health outcomes and quality of life of people with HIV. The launch of the Compendium comes during European Testing Week and just ahead of World AIDS Day on 1 December.

The HIV Outcomes policy recommendations

  1. Adopt an integrated, outcomes-focused, and patient-centred approach to long-term care
  2. Expand national monitoring of long-term care and outcomes
  3. Fund studies to provide information on the long-term health of people living with HIV
  4. Combat stigma and discrimination within health systems.
  5. Upscale involvement of the HIV community in priority setting at country level

Source: www.hivoutcomes.eu / @hivoutcomes

AFEW’s Chair of the Board Jeffrey Lazarus Steps Down

Jeffrey Lazarus

After three years as Chair of AFEW International’s Board, Professor Jeffrey Lazarus has stepped down on 1 June 2018. Many positive dynamic changes happened during his tenure. AFEW gained financial stability, renewed its board with community members, increased gender equity and cemented its position as a leading NGO in Eastern Europe and Central Asia (EECA).

Jeffrey Lazarus joined AFEW right after its re-organisation into a network with members in five EECA countries. AFEW was still negotiating the second phase of ‘Bridging the Gaps: health and rights for key populations’ project, which ultimately ensured financial sustainability for five years.

“Jeff Lazarus changed many things with regards to our Board. During these three years, AFEW’s board had more meetings and more involvement. During Jeff’s chairmanship, our organisation has gone through many important changes. We changed the location of our office in Amsterdam, our name, our logo and our statutes. These were all basic requirements to prepare AFEW for the future, for the next level in our work. Thanks to Jeff, we have got more visibility and more connections,” says AFEW International’s executive director Anke van Dam.

During his three years, Jeff provided needed input into AFEW’s strategies to improving access to health services – including hepatitis C – for key populations at risk.

Jeffrey V. Lazarus continues as an associated researcher at ISGlobal, Hospital Clínic, University of Barcelona and an affiliate professor at CHIP, Rigshospitalet, the University of Copenhagen, a WHO Collaborating Centre on HIV and Viral Hepatitis and will take on new duties as the first Vice-Chair of the EASL International Liver Foundation

“When I was at World Health Organisation a decade ago, the AIDS Foundation East-West (that now became AFEW International) was one of our most important non-governmental partners. I never imagined that one day I would become Chair of the Board and help shepherd in a new era where AFEW International solidified its leading role as an organisation working for the improved health of the most marginalised and vulnerable populations in Eastern Europe and Central Asia,” says Jeffrey Lazarus.

AFEW International wishes Jeffrey Lazarus all the best in his important work to improve the health and quality of life of marginalised populations.

AFEW Chairman Becomes HCV Change Maker

Board Chair of AFEW International Jeffrey V. Lazarus has recently become one of the 2017 HCV Change Makers from the Economist Intelligence Unit (EIU). The Change Makers programme recognises 18 Hepatitis C Virus (HCV) innovators doing exemplary work in the programme’s three thematic areas: multi-stakeholder approaches; screening; and technology. Their ground-breaking efforts can inspire and guide their peers on the path to HCV elimination. The programme also aims to spark debate and action on HCV policy and access to care.

AFEW‘s Board Chair is awarded for his work in technology. Being the associate researcher at the Barcelona Institute for Global Health, Hospital Clínic, and affiliated professor at the Centre of Excellence for Health, Immunity and Infections, Rigshospitalet, University of Copenhagen, Jeffrey Lazarus leads a large-scale digital survey of Hepatitis C patients in Europe. Together with leading stakeholders, Prof Lazarus and his colleagues now plan to repeat the survey on a regular basis, ensuring alignment with the objectives of the WHO Global Health Sector Strategy on Viral Hepatitis.

“The EIU changemaker award is a great recognition of the importance of involving patients in the hepatitis prevention, treatment and care that they need and deserve. My colleagues and I will continue to look for ways to further this agenda,” Jeffrey Lazarus is saying.

Hep-CORE’s 39 questions ask about national coordination, disease monitoring, prevention, testing and treatment. Among them: In your country, are there any HCV testing/screening sites outside of hospitals for the general population? In your country, is there a clear linkage-to-care mechanism so that people who are diagnosed with Hepatitis B and C are referred directly to a physician who can manage their care? Prof Lazarus and his team used Research Electronic Data Capture, an open-access web-based online data collection tool, to design the survey.

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.