HIV Outcomes launches policy asks for enhancing health and wellbeing of people living with HIV

On December 1st 2022, HIV Outcomes – Beyond Viral Suppression held a high-level event at the European Parliament to commemorate World AIDS Day and launch HIV Outcomes Policy Asks  ‘Enhancing long-term health and wellbeing among people living with HIV.’

The event occurred during the Czech Presidency of the Council of the EU and was co-hosted by MEP Frédérique Ries (Renew Europe Vice-President, Belgium), MEP Sara Cerdas (Socialists and Democrats, Portugal), and MEP Sirpa Pietikäinen (European People’s Party, Finland). The event was moderated by Nicola Bedlington, Senior Adviser and former Secretary-General of the European Patients’ Forum.

In her keynote speech, Stella Kyriakides, European Commissioner for Health, highlighted that ‘all people living with HIV should enjoy the highest possible quality of life, free from stigma and discrimination’. Since the beginning of the COVID-19 pandemic, resources have shrunk putting millions of lives at risk: we need to get back on track by addressing the inequalities that are preventing us to end the AIDS pandemic, by improving access to services and care, putting an end to stigma and discrimination, and improving the sharing of technology.

Among the presentations, Stéphan Vernhes, a Steering Group member of HIV Outcomes and Coordinator of the European Platform AIDES, reflected on his experience of living with HIV for 21 years. He stressed that taking care of our mental health is crucial as PLHIV need to recover from the stigma and discrimination they lived through. There is a need for stronger political engagement on pre-exposure prophylaxis (PrEP) to make it available to everyone. The criminalisation and discriminating against sex workers, people who use drugs, trans people, and LGBTQIA+ must stop.

Dr Anastasia Pharris, Principal Expert on Infectious Diseases at the European Centre for Disease Prevention and Control (ECDC), then presented key findings from a new ECDC report on health-related quality of life (HRQoL) of people living with HIV, commissioned by the European Parliament committee responsible for public health. Pharris noted that 106,000 people were newly diagnosed with HIV in the WHO European Region in 2021, with an overall number of 2.3 million people living with HIV (PLHIV) in the WHO European Region.

In collaboration with the European AIDS Treatment Group (EATG) and AIDS Action Europe (AAE), ECDC launched a survey to measure stigma across communities in European countries. There were over 3,000 respondents. Responses highlight the fact that stigma is highly prevalent. For instance:

• 1 in 6 PLHIV has not told a single friend that they have HIV and 1 in 4 has not told a single family member
• More than a quarter of respondents reported being ashamed of their HIV status and having low self-esteem because of their HIV status
• HIV-related stigma is highly prevalent and far greater efforts are needed to address this in community and healthcare settings

Professor Jane Anderson, HIV Outcomes Co-Chair and Consultant Physician at Homerton Healthcare NHS Foundation Trust in the United Kingdom, stressed that living with HIV is not simple as we have witnessed the arrival of many more comorbidities. Ensuring adequate mental health care is fundamental as it has long been separated from physical healthcare. This has to be changed. Healthcare settings need to be stigma free, a place where people living with HIV feel safe.

Professor Giovanni Guaraldi, HIV Outcomes  Member and Associate Professor at the University of Modena and Reggio Emilia, presented the HIV Outcomes policy asks on ageing with HIV. Older people living with HIV have higher odds of having multiple chronic conditions as they are frailer than HIV-infected persons. He called for a shift towards a new paradigm of ageing, where it is not looked at as an accumulation of diseases, but frailty and vulnerabilities are addressed. The objective should be healthy ageing looking at intrinsic and functional ability.

Professor Jeffrey Lazarus, HIV Outcomes Co-Chair and Head of the Health Systems Research Group ISGlobal at Hospital Clinic, University of Barcelona, Spain, recommended that actions be taken by HIV clinics/care providers to improve the measurements of patient-reported outcomes and to employ them to improve clinical care, as well as and health outcomes monitoring. The EU has a role to play in providing funding to help standardised and comparable data on patient-reported outcomes and the inclusion of HIV within the OECD patient-reported indicators survey (PaRIS).

The Policy Asks on stigma and discrimination was presented by Mario Cascio, HIV Outcomes Steering Group Member and Chair of EATG’s Quality of Life Programme, and Anton Basenko, EATG Quality of Life Programme Manager. Cascio stressed the importance of addressing stigma in health care systems will be increasingly relevant for co-morbidity management. Stigma can discourage people to get tested or getting the care they need as stigma and mental health are closely related and it is one of the pathways to depression and mental issues. Peer-to-peer and community-based interventions are needed to address discrimination, whereas people living with HIV need support as they learn to live with HIV. Any future EU mental health strategy should address people living with HIV and stigma as HIV remains a highly stigmatised disease.

Basenko stressed that there is no universal solution and ‘magic bullet’ to overcome stigma and discrimination, but all tools and approaches are well-known so far and there are several concrete principles you have to follow: work comprehensively and holistically on all levels and with all its aspects including self-stigma, work with people’s attitude including special groups to reduce stigma from law enforcement and healthcare providers. The second principle is meaningful involvement of communities and third is human rights-based approach.

During the Q&A, questions were raised about calling for enhanced attention to sexual health and financial barriers, in relation to HPV and the high rates of anal cancers among people living with HIV. In healthcare settings, awareness and empathy on these topics is missing and a human-rights approach has yet to be implemented.

The new Policy Asks calls for an integrated, patient-centred approach to the treatment and care of people with HIV. Recommendations targeting HIV clinics, national and regional health authorities, and EU decision-makers, focus on the need for:

• comorbidity prevention, treatment and management
• tailored health and social care services to support the unique challenges experienced by older people with HIV
• improved measurement and reporting of health outcomes and health-related quality of life
• action to combat stigma and discrimination, including within health systems.

Disclaimer: this is a meeting report by EATG that was not reviewed by the speakers.