Achieving the global target of ending the HIV epidemic by 2030 under SDG 3.3 requires urgent political commitment, funding and policy action. And the EU continues to lag behind. This roundtable with MEPs was held at the European Parliament to advocate for a new EU Action Plan on HIV/AIDS. Discussion underscored the need for renewed political dedication and targeted policies to address people’s complex needs and emphasised the importance of adapting policies to the evolving demographics of the HIV population, ensuring no one is left behind.

Key takeaways

• Funding remains a major challenge, with there is a need for increased financial investment in healthcare, including HIV initiatives. MEP Vytenis Andriukaitis and MEP Tomislav Sokol noted that budget allocations are a direct reflection of political priorities, and MEP Krzysztof Śmiszek (S&D, Poland) stressed that funding should reflect the importance of human rights in healthcare and inspire changes at the national level.

• Caroline Sabin (HIV Outcomes Co-chair) recognised that collaboration among stakeholders — academia, policymakers, civil society, and healthcare providers — is a cornerstone for HIV progress in Europe, while Mafalda Infante (UNITE Network, Head of Parliamentary Engagement) announced the relaunch of the Informal Working Group on HIV in the European Parliament.

• There is a lack of standardised HIV care practices in Europe, as well as disparities in access to care. While people living with HIV live longer and healthier lives, ageing with HIV presents complex healthcare needs that many clinics across Europe are ill-equipped or, in some cases, reluctant to address.

• MEP Tilly Metz (Greens/EFA, Luxembourg) highlighted that 1/3 of Europeans living with HIV experience discrimination, deterring individuals from seeking necessary care.

• MEP Marc Angel (S&D, Luxembourg) joined other participants in stressing the human rights dimension of HIV care, advocating for stronger alignment with EU values of equality and social justice.

• The collection and protection of data for people living with HIV has the potential to enhance the availability of reliable data, support the monitoring of individuals’ health-related quality of life and improve health interventions.

English: The recommendations presented at this event came from scientific research on 1,050 people living with HIV in partnership with the HIV care network.

The event was organised in collaboration with Romania’s National Institute for Communicable Diseases and the National Society for Infectious Diseases and HIV/AIDS. 

Română: Recomandările prezentate la acest eveniment au provenit din cercetări științifice efectuate pe 1.050 de persoane care trăiesc cu HIV, în parteneriat cu rețeaua de îngrijire HIV.

Evenimentul a fost organizat în colaborare cu Institutul Național de Boli Transmisibile din România și Societatea Națională de Boli Infecțioase și HIV/SIDA.

HIV Outcomes hosted a roundtable event in Madrid on HIV stigma and discrimination within the wider SEISIDA scientific meeting, “Hacer VIHsible lo invisible.” The roundtable aimed at sharing evidence-based policy recommendations and in-country best practices.

Participants exchanged good practices with Spanish authorities, helping to inform the Spanish EU Presidency’s political declaration on the topic.

Key takeaways

• Stigma and discrimination are a major barrier to people seeking the services they need. This is affecting outcomes for individuals and undermining public health.

• Key messages around U=U have not yet reached the public, and some healthcare workers also require education and training.

• Innovation can facilitate the development of new delivery models for HIV services, which can improve access to care and reduce stigma and discrimination.

• Good practices, ranging from initiatives by civil society and other stakeholders to legal and policy measures by governments, can help to address stigma and discrimination. HIV Outcomes has collated and shared these positive examples.

• Political momentum is behind the broad coalition of stakeholders committed to tackling stigma and discrimination against people living with HIV. There is cross-party support from MEPs and strong commitment from the incoming Spanish EU Presidency.

• The Spanish authorities rely on the support of the other EU Presidencies (Belgium and Hungary) for the development of the EU declaration on HIV and stigma. Informal discussions with other EU Member States took place as well, in an effort to build support for the declaration ahead of the Spanish EU Presidency.

While innovative therapies have helped turn HIV from a life-threatening disease into a long-lasting, chronic disease, people living with HIV are living longer but not necessarily living well. It is time to change the paradigm, beyond viral surpression, to ensure that people living with HIV can fully enjoy health-related quality of life (HRQoL). This virtual roundtable aimed to offer concrete policy actions for policymakers to successfully improve HRQoL in France.

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To mark the 40th anniversary since AIDS was first reported and to commemorate the 25th anniversary of UNAIDS, this event explored the policy actions needed for HRQoL to become a new focus to measure and improve the well-being of those living with HIV. It is time for a paradigm shift beyond viral suppression to ensure that they, too, can enjoy full HRQoL.

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The IAS conference is one of the world’s most influential meetings on HIV research and its applications and is attended by world-class scientists and national and EU-level policymakers interested in the latest breakthroughs in HIV and their potential application in science and policy.

HIV Outcomes organised a symposium to explore the long-term impact of Covid-19 on HIV/AIDS and what learnings from HIV treatment and care can be applied to the response to ‘long COVID.’

HIV Outcomes organised a working group session to explore funding opportunities for HIV projects beyond viral suppression in the EU4Health Programme (2021-2026)—the largest funding programme for health projects in the history of the European Union—with the purpose of identifying four to six concrete and scalable initiatives that may be considered for funding. Participants identified the priority areas below.

• Integrate e-health in HIV care and facilitate care provision through virtual platforms.

• Combat stigma and discrimination for people living with HIV.

• Address the impact of physical frailty on the HRQoL of people living with HIV.

• Provide better management for social frailty and mental health issues, and research the underlying causes (e.g. stigma, discrimination, physical decay) for a better response.

• Address the connections between Covid-19 and HIV.

• Address the impact of HIV on the HRQoL of vulnerable populations (including migrants and sex workers), and expand qualitative and quantitative research on such topic.

• Address the impact of HIV on the HRQoL of women, and expand qualitative and quantitative research on topics, such as frailty and menopause.

Participants also identified relevant HIV initiatives that could potentially be scaled with EU4Health funding, including:

• ISGlobal & SEISIDA’s Clinic Screening Tool

• EATG’s EmERGE

• U = U (Undetectable = Untransmitable)

• Happi app

• EU2Cure Consortium

On Wednesday 16 June 2021, HIV Outcomes organised a roundtable meeting to identify areas where HIV Outcomes might be able to contribute to the ongoing work around the health-related quality of (HRQoL) of people living with HIV in the UK. Chaired by Prof. Jane Anderson (Homerton University, HIV Outcomes Co-Chair), over 30 attendees from the UK HIV community, including high-profile individuals and experts, gave their perspectives on where the UK is with regards to HRQoL and what change is needed to continue improving the health-related wellbeing of the UK HIV community. 

Stakeholders recognised the importance of people’s HRQoL to the future of HIV care but highlighted challenges around measuring HRQoL as there is still no consensus on what ‘good’ HRQoL is. Likewise, attendees called for a ‘community stakeholder map’ in order to keep better track of the initiatives being carried out by UK organisations on HRQoL. 

Participants also identified several consultations and ongoing pieces of work that will potentially shape the HIV policy landscape in the UK for the coming years. It was agreed that these developments present HIV Outcomes with an opportunity to act as a focal point to: 

• undertake a stocktake on HRQoL work in the UK; 

• develop a consensus on how the HRQoL agenda can be taken forward;

• advocate for the inclusion of HRQoL in government policy on HIV. 

The meeting was concluded with a commitment to continue to take forward the work where possible, and further conversations as to how best to make that happen will take place in short order.  

HIV Outcomes and UNAIDS hosted a joint online workshop to further define the concept of health-related quality of life (HRQoL) and the factors impacting it. The objective was to achieve consensus on the challenges and objectives to develop accurate metrics to measure progress and performance.

Challenges identified crossed the physical, emotional and social components of Health-Related Quality of Life, including:

• Bio-medical aspects, such multi-morbidity, pain management and fatigue

• Issues related to the overall personal wellbeing, including mental health, stigma and discrimination– including self-stigma and blame

• Sexual and reproductive health and rights

• Social isolation

• Denial of medical care

Integrating mental health services into HIV care is essential to improve overall well-being for people living with HIV 

People living with HIV are more likely than average to develop mental health issues, but this is not yet fully reflected in HIV services, policies or practices. Stigma, discrimination and social isolation can add to the burden of anxiety and depression facing the HIV community.  

However, integrating psychosocial supports into hospital and community-based care remains a major challenge across Europe and beyond. Clear reimbursement and referral pathways, along with better use of digital health tools and data insights, can help to ensure services meet the needs of the HIV community.  

These were among the recurring themes at a high-level online conference convened by HIV Outcomes to mark World AIDS Day 2020. The event focused on mental health – a topic in line with the wider goal of shifting the focus of HIV policy beyond viral suppression.    

The Lancet HIV Series on HIV Outcomes: Beyond Viral Suppression

In the era of modern antiretroviral therapy people living with HIV can expect to live a normal lifespan. However substantial barriers to accessing non-HIV related care still exist and impact the wellbeing of this population. Current targets for the HIV response focus on testing, treatment and viral suppression. However, many factors come into play to determine the health-related quality of life of people living with HIV. The Series put the spotlight on person-centred HIV care, tackling stigma and reorienting services for a ‘beyond viral suppression’ paradigm shift.

‘The Lancet HIV series on HIV Outcomes: Beyond Viral Suppression’ were led by HIV Outcomes Co-Chairs Prof. Jeffrey V Lazarus and Prof. Jane Anderson. The series argue that, with HIV becoming a chronic disease, health systems are largely unprepared to meet the needs of growing numbers of ageing people living with HIV.

Despite living longer lives, the overall quality of life of people living with HIV does not match that of the rest of the population. People living with HIV still face significant stigma and discrimination, and are burdened by comorbidities and a higher rate of mental health issues.

The Webinar

On 15 June, 2020 we organised a webinar on the European Commission Health Policy Platform to discuss the key learnings from ‘The Lancet HIV series on HIV Outcomes: Beyond Viral Suppression’, and explore possible solutions to address the emerging challenges:

• Health system integration to promote a holistic approach to HIV care.

• HIV-related discrimination reduction within healthcare systems and among the general population.

• The extension of the global UNAIDS 90-90-90 targets to include a “fourth 90” to track progress on health-related quality of care.

• New roles for civil society and the involvement of people with HIV in the development of patient reported outcomes and of stigma reduction strategies.

Hope that new European Parliament will bring fresh momentum to HIV policy

HIV has fallen off the EU’s political agenda but MEPs, patients, clinicians and academics put the spotlight on long-term health and well-being of people living with HIV at a HIV Outcomes roundtable event in Strasbourg

European policy makers can play an active role in improving the lives of people living with HIV by helping to tackle stigma and discrimination, supporting research on health outcomes and quality of life, and shifting the focus towards long-term well-being.

However, HIV has slipped down the list of EU health policy priorities in recent years and efforts are need to address the current reality: people with HIV are living long and active lives, but this has brought new challenges which must be reflected in European and national policies.

These were among the recurring themes at a well-attended HIV Outcomes roundtable discussion held in the European Parliament on 26 November. The event was hosted by a cross-party group of MEPs: Frédérique Ries (Renew Europe, Belgium), Cristian Bușoi (European People’s Party, Romania), Sara Cerdas (Socialists & Democrats, Portugal) and Petra De Sutter (Greens, Belgium).

As the EU enters a new political cycle – with a new intake of MEPs and the European Commission taking office – the event was an ideal opportunity to engage with those shaping the health policy agenda for the next five years.

New Year’s Resolution?

 The strong attendance and engagement of MEPs illustrated their willingness to add new momentum to EU policy in this area. Several participants raised the possibility of a European Parliament initiative to address the long-term health needs and quality of life of people with HIV – including issues arising from living with co-morbidities and mental health challenges. There was also particular interest in measures that the EU could take to tackle stigma and discrimination.

The need for a robust evidence base on which to build policy was emphasised, with some MEPs suggesting that the European Parliament Research Services conduct a study on the needs of people with HIV in the long-term. It was also noted that the European Centre for Disease Prevention and Control (ECDC) should be further empowered to monitor quality of life measures, along with its existing role collating data on HIV incidence.

One of the challenges for HIV Outcomes is the breadth of policy areas at EU level which can affect the lives of people living with HIV. This was echoed by several contributors who highlighted the need to engage on policy at EU level around common co-morbidities for example, cancer. In addition, MEPs expressed a willingness to take the conversation beyond the Parliament’s committee responsible for Health (ENVI), and to work with committees on Women’s Rights and Gender Equality (FEMM) and on Development (DEVE). The limits of EU action in this area was also noted, as Member States are responsible for the management of healthcare.

Accelerating progress

While HIV policy at EU level needs to be reinvigorated, and more evidence is needed on long-term well-being for people living with the condition, MEPs are not starting from scratch. HIV Outcomes has developed key  recommendations and a compendium of good practices, and engaged with European and national stakeholders to accelerate progress in this area.

A new report sharing insights from Germany and Romania, where the HIV Outcomes recommendations were road-tested in 2019, was also launched at the event. This adds to the publication of the 2018 report on Italy and Spain, helping to translate recommendations into real-world actions in European countries.

A HIV Outcomes ‘Call to Action’ was also launched at the roundtable. It calls for political leadership to ensure that the long-term health outcomes and quality of life of people living with HIV are high on the political agenda and that Europe delivers on its commitment to tackle communicable diseases.

The event also saw the launch of ‘The Lancet HIV Series on HIV Outcomes Beyond Viral Suppression’. The Series looks at health-related quality of life measures, patient reported outcomes, and how stigma can undermine the well-being of people living with HIV. The Series was led and guest edited by HIV Outcomes Co-Chairs Jeffrey Lazarus and Jane Anderson together with steering group member Georg Behrens of Hannover Medical School – who also represents the European AIDS Clinical Society on HIV Outcomes’ steering group – and Teymur Noori from the ECDC – an observer to HIV Outcomes’ steering group.

The welcome support of MEPs in prioritising HIV and shifting the focus to long-term health outcomes and quality of life could mark the opening of a new chapter in European HIV policy. Action from the European Parliament, matched with support from the European Commission, European Council and Member States, could help to deliver measurable improvements for people in Europe living with HIV.

The nature of the HIV epidemic has changed. As a result of advances in antiretroviral therapy (ART), HIV need no longer be a fatal disease. For people living with HIV (PLHIV) who are diagnosed early and receive effective ART to suppress viral replication, HIV has become a chronic condition with lifespans approaching those of the general population. However, a long life expectancy is not the same as living in good health and with good quality of life. 

During this launch event at the European parliament, participants highlighted that a new perspective is required that recognises HIV to be a long-term condition, but one which poses very specific health and well-being challenges. Participants discusssed challenges including

• an increased risk of developing a range of other health conditions (comorbidities)

• reduced quality of life due to the impact of long-term treatment, drug side effects, and multiple comorbidities

• stigma and discrimination, both within the health system and outside of it, which can in turn result in mental health comorbidity, social isolation and loneliness