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. However, as they live longer, they have specific health needs that must be recognised and met if they are to enjoy a good quality of life and good health outcomes.
Although these needs are recognised by clinical experts, they are not sufficiently well-recognised by either policy makers or healthcare providers. It is therefore essential to raise awareness of these needs for European health systems to develop effective, 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 steering group assembled of leading patient advocates, clinicians, academics and industry representatives. The European Centre for Disease Control (ECDC) participate in 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. Following two roundtable events to identify priorities, an expert workshop developed draft policy recommendations. The final 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 groups have since been created at country level in Italy, Germany, Spain, Sweden and Romania. 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.
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.
‘The Lancet HIV Series on HIV Outcomes: Beyond Viral Suppression’, which was launched in the European Parliament in November 2019, was led and guest edited by HIV Outcomes steering group members, incluidng observer ECDC (see below).
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 quality health outcomes for people living with HIV.