The Challenge
Thanks to advances in treatment, people living with HIV can now enjoy life expectancy that is on a par with that of the rest of the population.
Yet this does not always mean years spent in good health. People with HIV are at higher risk of developing a range of other physical and mental health conditions that must be recognised and met if they are to enjoy a good quality of life and good health outcomes.
There is widespread recognition among experts that important issues of health and social inclusion of people living with HIV receive insufficient attention from policy makers and healthcare providers. It is therefore essential to raise awareness of these needs for European health systems to develop integrated, person-centred and lifelong approaches to the treatment and care of people living with HIV.
The FIPRA Approach
To address the lack of visibility around these long-term health needs, in 2016, FIPRA helped establish the HIV Outcomes Initiative. This coalition set out to advocate for national policies across the European region which ensure that people living with HIV receive the patient-centred healthcare they need. The Initiative is presided over by a former MEP and Minister of Health, with a former EU Health Commissioner supporting as Ambassador, as well as a steering group assembled of leading patient advocates, clinicians, academics and industry representatives. The European Centre for Disease Control (ECDC) and UNAIDS participate in as observer status.
The Initiative undertook a year-long exercise to gather evidence from people living with HIV, clinicians and public health professionals and draw on their expertise to develop new approaches to policy. The policy recommendations, endorsed by leading advocates working in the field, were formally launched in the European Parliament in 2017 with support from across the political spectrum and the European Commissioner for Health.
Local coalitions have since been created at country level in Italy, Germany, Spain, Sweden, Romania and the UK. They aim to determine which recommendations could make a significant impact in their local setting, to overcome any barriers to their adoption, and to advocate for the necessary local policy and clinical changes to improve long-term health outcomes.
Five years on from the launch of the 2017 Recommendations, HIV Outcomes launched in 2022 Policy Asks at the World AIDS Day event in the European Parliament. The Policy Asks were developed through collaboration between HIV Outcomes local coalitions, steering group members, and general members from across the WHO European region and identified four key areas where action is needed to improve health and well-being among people with HIV:
• Comorbidity prevention, treatment and management
• Ageing with HIV
• Measurement of person-reported outcomes (PROs) and monitoring of health-related quality of life
• Combatting stigma and discrimination
The Outcome
The HIV Outcomes Initiative has succeeded in raising awareness amongst policy makers of the need to address the new challenges facing people living with HIV. The monitoring framework for the ‘Dublin Declaration on Partnership to Fight HIV/AIDS in Europe and Central Asia’ now incorporates quality of life, while the policy and clinical recommendations are being tailored and implemented at national and local level. A comprehensive online compendium of good practices in long-term HIV care, has also been developed, and was presented at the AIDS 2018 conference in Amsterdam.
In 2021, the UNAIDS Global AIDS Strategy (2021-2026) for the first-time referenced quality of life and emphasised the importance of adopting differentiated care. Similarly, the WHO Global Health Sector Strategies for HIV (2022-2030) also captured for the first time the good health-related quality of life (HRQoL) as an additional key outcome for a health service delivery.
Recognising the importance of reporting individual outcomes in reference documents represents a significant step forward for the Initiative and is a great accomplishment in monitoring the health and well-being of people living with HIV.
Thanks to the evidence generated, HIV Outcomes national initiatives advocate and implement evidence-based policy and clinical change at country-level across Europe.
The Initiative will continue to build on these successes – supporting local implementation as well as ensuring political leadership at the national, European and global level to drive forward policies supporting the health-related quality of life and good health outcomes for people living with HIV.
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