On 29 November 2017, the multi-stakeholder European initiative “HIV Outcomes: Beyond viral suppression” launched recommendations on the long-term health, well-being and chronic care of people living with HIV (PLHIV).

The recommendations are the outcome of a year-long collaborative process to capture the perspectives and expertise of people living with HIV, clinicians, public health professionals, and the wider HIV community. Two expert roundtables were held – in December 2016 and June 2017 respectively – to identify priority issues in relation to the long-term health and well-being of PLHIV. In September 2017, an expert workshop was held to develop and discuss draft recommendations.

The final recommendations were then launched at the European Parliament with cross-party support from Members of the European Parliament (MEPs) Christofer Fjellner (European People’s Party, Sweden), Eva Kaili (Socialists and Democrats, Greece) and Gesine Meißner (Alliance of Liberals and Democrats for Europe, Germany).

1. Adopt an integrated, outcomes-focused and patient-centred approach to long-term HIV care

People living with HIV require access to a range of health services beyond just their HIV treatment. This includes services for: prevention, treatment and management of comorbidities; mental health and neurocognitive impairment; and advice and support in relation to sexual and reproductive health.

The additional recommendations below supplement and provide further detail:

  • Put comorbidity prevention, treatment and management at the centre of long-term HIV care
  • Coordinate outcomes-focused care delivery using a personalised care plan
  • Integrate services for mental health and neurocognitive impairment
  • Ensure an ongoing focus on sexual and reproductive health
  • Increase systematic participation of PLHIV in decisions about their care

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2. Expand national monitoring of long-term HIV care and outcomes

Current monitoring efforts should be expanded to reflect the reality of HIV as a long-term condition. Improved monitoring would enable assessment of national progress over time, and analysis of within country variation.

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3. Fund cohort studies to provide information on the long-term health of people living with HIV

The European Union should recommit to providing stable funding to enable future collaboration and establish cohorts/databases in European countries where none currently exist.

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4. Combat stigma and discrimination within health systems

Training and education of healthcare staff should be a priority, both in order to raise awareness of stigma and discrimination within healthcare settings, and to help combat the underlying attitudes that give rise to it.

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5. Upscale involvement of the HIV community in priority setting at country level

A key role should be played by HIV community organisations, drawing upon their local knowledge, in working with national policy-makers to identify and agree priorities for action.

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This initiative is enabled by sponsorship provided by Gilead Sciences and ViiV Healthcare.