Quality of life for people living with HIV is as important as ever

By Fungai Murau, Sarah Middleton-Lee

By Sarah Middleton-Lee (consultant) and Fungai Murau (support officer for knowledge and influence)

This year marks 30 years since World AIDS Day began. Each year, it gives us a reality check. Where have we got to in the response to HIV? And what’s still to do?

NtsikiNtsiki Shabangu, 22, is a Community Adolescent Treatment Supporter (CATS) in Swaziland. CATS are HIV positive young people, 18-23 years, who work between the health facilities and homes of children, adolescents and young people living with HIV with the goal of improving outcomes across the HIV care cascade. ©Sydelle Willow Smith

The day is accompanied by new data – this year telling us that a record 21.7 million people living with HIV now receive antiretroviral therapy. For each one, treatment has the potential to save their lives - by maintaining or regaining their physical health. It can also enable viral suppression, when the level of HIV in their bodies becomes undetectable - meaning that they cannot transmit the virus to others. Undetectable = Untransmittable.

However, there is other news. Worldwide, 25% of people living with HIV still do not know they have the virus. Meanwhile, 41% of people lack access to treatment and 53% (19.4 million people) are yet to achieve viral suppression.

This particular reality check is driving a new focus on quality life for people living with HIV. This recognises that – despite medical advances and the ‘leave no one behind’ promise of the international framework on sustainable development adopted in 2015 – AIDS is far from over and neither is the need for people living with HIV to have good health and wellbeing.

But what actually is ‘quality of life’? Well, there’s no easy answer. It means different things to different people – depending on their specific requirements, culture, goals and expectations. It is comprised of multiple factors that, in combination, add up to an individual’s sense of ‘living well’.

For people living with HIV, quality of life is often about the same things as anyone else – such as good health, social relationships and economic opportunities. However, it is also about attention to the challenges of living with a virus that continues to be wrought with uncertainty, fear and prejudice. Examples of such challenges include human rights violations, stigma and discrimination - all of which can be especially hard-hitting for marginalised populations.

Quality of life matters even if a person living with HIV has achieved viral suppression. This is because the type of measures it entails – such as peer support and stigma-free health services – help people maintain their treatment in the long-term. It is also because the measures help people deal with the new era of issues brought by ‘ageing with HIV’. These days, people living with HIV have almost the same life expectancy as anyone else, but face disproportionately high levels of other chronic physical conditions (such as cardiovascular disease and cancer) and mental health conditions.

Quality of life is, arguably, even more important for people living with HIV who remain without treatment and/or viral suppression. For these community members, it can be a lifeline – helping them improve their physical health and mental well-being, and putting them in the best position to maximise treatment.

So, how do organisations like ours make quality of life a reality? One way is to encourage a person-centred and holistic approach to the programmes we support across the world. This recognises that each and every person living with HIV requires a package of support. This combines attention to:

  1. Prevention, care, support and treatment for HIV,
  2. Prevention, care, support and treatment for non HIV-specific physical and mental health conditions,
  3. Well-being and wider social, cultural and economic rights.

Quality of life

As the response to ending AIDS continues into its fourth decade, our work is not just about prolonging the lives of people living with HIV. It is about ensuring that those lives are healthy, happy and fulfilled. Quality of life is not a ‘luxury’ or ‘optional extra’. It is a human right – one that is more important than ever.

Read the full report on Quality of life for people living with HIV: what is it, why does it matter and how can we make it happen?