Enhancing long-term health and wellbeing among people living with HIV

Launch of HIV Outcomes Policy Asks

Hosted under the auspices of the Czech EU Presidency

The HIV Outcomes initiative organised a meeting on World AIDS Day 2022 to raise awareness of measures to improve wellbeing for people living with HIV. It also launched the HIV Outcomes Policy Asks and Recommendations, the result of a year-long collaboration between over 60 experts and organisations with the ambition to guide policy actions at EU and Member State level.

HIV is a long-term condition and thanks to the widespread availability of antiretroviral therapy, life expectancy among people living with HIV is approaching that of the general population. Yet this does not always mean years spent in good health. People living with HIV are at higher risk of developing mental health conditions and continue to experience stigma and discrimination within health systems.

Key takeaways

• MEP Frederique Ries (Renew Europe, Belgium) championed the work of HIV Outcomes and the need to focus on health-related quality of life of people with HIV. She warmly welcomed the new report by the ECDC, commissioned by the European Parliament committee responsible for public health, and emphasized the need to give voice to those living with the condition.

• The European Commissioner for Health, Stella Kyriakides conveyed her support for the work of HIV Outcomes, stating that it had a ‘simple but powerful vision’: ‘that all people living with HIV should enjoy the highest possible quality of life’. It is not enough, Kyriakides said, that people with HIV are able to live long lives, they should also live healthy and fulfilling lives. The HIV Outcomes policy asks are ‘an important step’ towards this ‘shared vision’. Kyriakides also confirmed that the new EU Expert Group on Public Health will cover chronic and communicable diseases including HIV.

• Stephan Vernhes, a Steering Group member of HIV Outcomes and Coordinator of the European Platform AIDES, provided a personal experience of living with HIV, highlighting the impact of stigma on mental health and psychological wellbeing. A minute’s silence was then observed to remember all those that have died from AIDS.

• The HIV Outcomes ‘Policy Asks‘ were then launched and presented by HIV Outcomes co-chairs and members, highlighting the need for actions by HIV clinics/care providers, regional and national health authorities, and the EU. Prof Jane Anderson focused on prevention, treatment and management of co-morbidities; Prof Giovanni Guaraldi outlined the spoke about the challenges associated with ageing with HIV, Prof Jeffrey Lazarus focused on the need to measure and monitor health-related quality of life and EATG’s Mario Cascio and Anton Basenko reflected on the challenges of combatting stigma and discrimination.

• Vytenis Andriukaitis, HIV Outcomes Ambassador and WHO Special Envoy for Europe commended HIV Outcomes for the work that it is doing and emphasised how much he had learned from the event. He called for sharing of best practices among clinicians and community members, in particular to improve integrated, holistic care for people with HIV.

• Participants List

  • Stella Kyriakides, European Commissioner for Health and Food Safety.

  • Hosting MEPs Frédérique Ries (Renew Europe Vice-President, Belgium), Sara Cerdas (Socialists & Democrats, Portugal) and Sirpa Pietikäinen (EPP, Finland).

  • Dr Vytenis Andriukaitis, HIV Outcomes Ambassador and WHO Special Envoy for Europe.

  • Dr Anastasia Pharris, Principal Expert for Infectious Diseases and group leader on STIs, blood- borne viruses and TB, European Centre for Disease Prevention and Control (ECDC).

  • Baroness Barker, House of Lords Member and All Party Parliamentary Group HIV and AIDS Co-Chair, UK.

  • Dr Anca Streinu Cercel, PhD Senior Lecturer at Carol Davila Medicine and Pharmacy University, Clinician at National Institute for Communicable Diseases “Prof Dr Matei Bals”, Romania.

  • Prof Giovanni Guaraldi, Infectious diseases Associate Professor at the University of Modena and Reggio Emilia, Italy.

  • Prof Jane Anderson, HIV Outcomes Co-Chair & Consultant Physician at Homerton Healthcare NHS Foundation Trust, UK.

  • Prof Jeffrey Lazarus, HIV Outcomes Co-Chair & Head of Health Systems Research Group ISGlobal at Hospital Clinic, University of Barcelona, Spain.

  • Mario Cascio, HIV Outcomes Steering Group Member & EATG Quality of Life Programme Chair.

  • Stéphan Vernhes, HIV Outcomes Steering Group Member & Coordinator European Platform AIDES.

• Agenda

  10 min | Welcome remarks

  MEP Frédérique Ries, Renew Europe Vice-President, Belgium

  5 min | Setting the scene

  Stéphan Vernhes, HIV Outcomes Steering Group Member & Coordinator European Platform AIDES

  5 min | Rethinking healthcare systems to focus on patient and not just the disease
  
  Stella Kyriakides, EU Health Commissioner

  10 min | Health-Related Quality of Life in people living with HIV – current situation and COVID-19 impact
  
  Dr Anastasia Pharris, Principal Expert Infectious Diseases (ECDC)

  45 min | Launch of HIV Outcomes Policy Asks
  
  Achieving zero stigma and discrimination in healthcare settings

  • Mario Cascio, HIV Outcomes Steering Group Member & EATG Quality of Life Programme Chair

  • Anton Basenko, EATG Programme Manager

  Beyond viral suppression: the impact of mental health and other comorbidities
  
  Prof Jane Anderson, HIV Outcomes Co-Chair & Consultant Physician at Homerton Healthcare NHS Foundation Trust, UK

  Ageing with HIV
  
  Prof Giovanni Guaraldi, HIV Outcomes General Member & Infectious diseases Associate Professor at the University of Modena and Reggio Emilia, Italy

  ’What gets measured gets done’ – monitoring PROMs and HRQoL
  
  Prof Jeffrey Lazarus, HIV Outcomes Co-Chair & Head of Health Systems Research Group ISGlobal at Hospital Clinic, University of Barcelona, Spain

  Q&A

  10 min | What role for European action on addressing HIV outcomes beyond viral suppression?
  
  Dr Vytenis Andriukaitis, HIV Outcomes Ambassador and WHO Special Envoy for Europe

  20 min | National perspectives: UK and Romania

  • Baroness Barker, House of Lords Member and All Party Parliamentary Group HIV and AIDS Co-Chair, UK

  • Dr Anca Streinu Cercel, PhD Senior Lecturer at Carol Davila Medicine and Pharmacy University, Clinician at National Institute for Communicable Diseases “Prof Dr Matei Bals”, Romania

  15 min | Closing remarks and next steps

  • MEP Sara Cerdas, S&D, Portugal

  • MEP Sirpa Pietikäinen, EPP, Finland