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26.11.2019

Policymakers called to prioritise quality of life of PLHIV on political agenda

HIV Outcomes launched today a Call to Action urging European policymakers to ensure that long-term health outcomes and the quality of life of people with HIV are high on the political agenda. At a roundtable event in the European Parliament, Members of European Parliament, the European Commission, European experts, patients and clinicians discuss key findings from a new report, which highlights the unaddressed long-term needs of people living with HIV in Europe.

Importantly, The Lancet HIV launched ‘The Lancet HIV Series on HIV Outcomes Beyond Viral Suppression, a special series of the highly-regarded peer-reviewed medical journal 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 (EACS) on HIV Outcomes’ steering group – and Teymur Noori from the European Centre for Disease Prevention and Control (ECDC) – an observer to HIV Outcomes’ steering group. This Series puts the spotlight on person-centred HIV care, tackling stigma and reorienting services for a new era that goes ‘beyond viral suppression’.

As life expectancy for people living with HIV has increased, additional unmet requirements for achieving good long-term health and well-being have emerged. The HIV Outcomes Call to Action highlights the value of promoting well-being, preventing comorbidities (co-existing medical conditions) and eliminating stigma and discrimination in improving people’s lives. This will, in turn, help reduce future public expenditure, increase productivity and extend working life. It proposes concrete actions for European policymakers to ensure that the long-term health outcomes and quality of life of people living with HIV are high on the political agenda.

‘We should celebrate the fact that people with HIV are living longer,’ said Nikos Dedes, Co-Chair of HIV Outcomes. ‘Now we must rise to the new challenges this presents and help people to live long healthy lives. This means improving access to services for the prevention, treatment and management of chronic conditions, as well as mental health support and sexual and reproductive health advice. We are ready to work with policymakers to co-design better policy actions.’

The event, co-hosted by MEPs Frédérique Ries (Renew Europe, Belgium), Cristian Busoi (European People’s Party, Romania), Sara Cerdas (Socialists and Democrats, Portugal) and Petra De Sutter (Greens, Belgium), showed the latest insights from the HIV Outcomes initiative. Building on the initiative’s 2017 recommendations and 2018 report on the road-testing of the recommendations in Italy and Sweden, the new learnings from HIV Outcomes’ 2019 activities put the spotlight on Germany and Romania.

‘Europe must ensure that people living with HIV have good health-related quality of life and that stigma and discrimination are eliminated. As policymakers, we are committed to deliver for citizens by supporting policy change to secure the long-term health and wellbeing of people living with HIV. The Call to Action and insights from Lancet HIV as well as HIV Outcomes’ in-country activities offer concrete actions to make this happen,’ the MEPs said in a joint statement.

While Germany is on the verge of reaching the UNAIDS ’90-90-90’ goals, the report calls for the addition of a fourth goal – quality of life – and improved data collection on quality of life measures. Romania, where a large proportion of people living with HIV contracted the infection  whilst in state care between 1985 and 1995, was a forerunner in establishing access to antiretroviral therapies and social support. However, the concept of quality of life for people living with HIV in the long-term is not yet well established. In both countries, there is a need for more research on the determinants of quality of life in people with HIV and for greater efforts to combat discrimination in the health system and wider society.

The HIV Outcomes policy recommendations

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

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