A fulfilling life beyond viral suppression for all people living with HIV: what Europe needs to move from possibility to reality

This website has been created by Gilead for the purposes of disease education and awareness.

As we mark the 40th anniversary since the first cases of AIDS were reported, it is time for reflection; over 75 million people were diagnosed HIV-positive and over 32 million people have died1 from AIDS-related illnesses since the start of the global HIV epidemic.

In 2020 alone, approximately 1.5 million people were diagnosed HIV-positive and an estimated 690,000 died2 from AIDS-related illnesses worldwide.

This is a tragic human loss and shows that the global HIV community has still a long way to go to end the HIV epidemic by 2030, the deadline set by the United Nations’ Sustainable Development Goals (SDGs)3. However, we must not forget the significant advances that have been achieved in managing HIV, including the availability, effectiveness and tolerability of innovative antiretroviral therapy (ART)4,5. Over the years, HIV has been transformed from a death sentence into a manageable long-term condition for those diagnosed early enough and starting and staying on treatment. This is demonstrated by the fact that the number of people living and aging with HIV has increased over the years, with 4.2 million people living with HIV now over the age of 506.

In certain countries, many people living with HIV can now expect to have nearly the same life expectancy as the general population7. Whilst this is a remarkable accomplishment, it is important to ensure that people living with HIV are not just living a longer life, but are living a fulfilling life beyond viral suppression. For some, this is a tangible reality, but for others, persisting inequalities make this an unachievable goal. Despite great disparities that persist, there are a number of commonalities that negatively affect quality of life (QoL) and wellbeing of people living with HIV. These include: lack of access to effective treatments, stigma, discrimination and social injustices and co-morbidities8.

With new UNAIDS targets aiming to raise the bar to successfully end the HIV epidemic by 20309, it is important to acknowledge that these goals cannot be achieved in Europe unless all people living with HIV have equal access to diagnosis, treatment and holistic care. Whilst it is possible for some people living with HIV to live a fulfilling life beyond viral suppression, this is still not a reality for many key affected populations and in specific regions across Europe. It is crucial for policymakers to acknowledge this challenge and identify the causes of unequal access to HIV care, with a view to adopt policy measures that prioritise social justice and the removal of barriers to access to testing, prevention and care.

Living and aging well with HIV is not a reality for everyone

Despite progress in increasing the number of people on treatment, almost one in six people who have been diagnosed with HIV in the EU/EEA and who would benefit from treatment are still not receiving antiretroviral therapy (ART)10. This is because the way people experience life with HIV can vary significantly depending on who they are and where they live. For example, healthcare inequities represent a significant barrier for people when trying to access HIV treatment.

In many countries, people diagnosed with HIV and not receiving ART is a consequence of barriers created by challenges within healthcare systems11. Access to treatment among people living with HIV can vary greatly across countries. In 2019, treatment coverage was estimated to be around 85% in Italy, France and Spain, whilst in Ukraine, Moldova and Montenegro, it was below 55%12. Reported barriers include inadequate referral mechanisms, unavailability of treatment programmes and poor integration between health and support services13. Such barriers may ultimately lead to a delay or inhibition of ART initiation. In addition, poor adherence due to a lack of support can inhibit individuals from achieving viral suppression14. Moving forward, it is essential that policymakers encourage the development of an integrated, multidisciplinary approach to long-term HIV care across all European countries.

Stigma and discrimination: outstanding barriers in tackling HIV

Despite progress being made in addressing the widespread stigma that has long been associated with HIV, it still has a significant impact on the outcomes of those living with HIV today. Stigma and discrimination directed towards key populations (including men who have sex with men, people who inject drugs, migrants, transgender people and sex workers) can result in individuals becoming increasingly marginalised and disconnected from the healthcare services they need to prevent themselves from acquiring HIV or treat HIV infection15. It has been reported that people living with HIV who experience high levels of stigma are four times more likely to report poor access to care, resulting in low levels of treatment initiation and adherence16.

Social injustices faced by people living with HIV vary significantly across geographies and demographics and can be driven by societal attitudes, self-perception, and laws and policies17. For example, people who inject drugs are still criminalised in some European countries18,19. In the Czech Republic, there is a low HIV prevalence among this population due to the decriminalisation of drug use and increased access to harm reduction services . In contrast, in Spain, people who inject drugs identified a lack of social support as a barrier to initiating and adhering to ART21, with stigma surrounding drug use amongst peers and non-specialist healthcare professionals cited as a key factor. Restrictive health policies can have a major impact on HIV outcomes, with undocumented migrants unable to access HIV treatment across 16 European countries22. For progress to be made amongst these key populations, it is crucial that policymakers ensure the removal of all legal and social barriers to accessing HIV services, which ultimately perpetuate the issue of stigma and discrimination. In order to retain all populations living with HIV in care, it is critical that integrated holistic health services are modified to reach underserved populations.

Addressing co-morbidities is key for a fulfilling life beyond viral suppression for people living with HIV

Long-term management of people living with HIV should also take into account the increased risk of co-morbidities that these populations face, including age-related chronic conditions and co-morbidities associated with some forms of ART, such as liver disease, cardiovascular disease and cancer23,24. People living with HIV are also disproportionately affected by mental health conditions, with the risk for depression being two times higher than the general population25. Over the last year, the COVID-19 pandemic has heightened the risk of mental health challenges and access to treatment26. By July 2020, 13% of countries within the WHO European region were experiencing risk of disruption to ART services27. Even for those living in countries (or regions) where services remain available, co-morbidities, including mental health conditions, can make self-management of HIV a challenge and undermine adherence to ART28. It is therefore important that mental health care is routinely offered as part of long-term HIV treatment to ensure good QoL and outcomes.

Equal access to innovative healthcare is key to ensure progress continues

Are all people living with HIV really able to live their best life? Understanding the various social and healthcare inequities that people living with HIV face is crucial to develop an integrated, outcomes-based approach that focusses on improving the holistic health and wellbeing of all people living with HIV, irrespective of their gender, race, sexuality, migration status or socio-economic background. The care offered to people living with HIV, whether screening, prevention or treatment, cannot be ‘one size fits all’ and need to be tailored to overcome the unique barriers faced by key affected populations within different communities.

The total number of people living with HIV still increasing in recent years shows the urgency for action. The European Union, governments and public health bodies need to commit resources and action, as set out in the 2021 UN Political Declaration29 on HIV and AIDS, to ensure that 95% people are diagnosed, 95% of those diagnosed are on treatment and of those on treatment 95% are virally suppressed.

Gilead is ready to contribute to such effort by working with the HIV community and governments to ensure the tools to prevent new cases are available as well as the best care options, so that all people living with HIV can live a fulfilling life. Only through a coordinated effort amongst all relevant stakeholders, can Europe make this a reality.