QUALITY OF LIFE FOR PEOPLE LIVING WITH HIV: WHEN STRIVING FOR SURVIVAL IS NO LONGER ENOUGH

Man smiling and looking into the distance

Due to advances in research and the advent of highly-active antiretroviral therapy, HIV has become a long-term health condition and many people living with HIV with access to treatment are now living longer, healthier lives than before. HIV care and treatment are no longer about just prolonging life, but also ensuring good health-related quality of life.1

“With increased access to HIV medicines across the globe, substantial progress has been made in reaching the UNAIDS 90-90-90 targets - 90% of all people living with HIV in a community or a country are aware of their HIV status; 90% of those aware will be accessing treatment and 90% of those on treatment will have suppressed viral loads.2 As improvements in HIV medicines continue and increasing numbers of people benefit from these advancements, the average age of people living with HIV is expected to rise, with those aged 50 or over predicted to increase to almost nine million globally by 2020.”3


It’s complicated: unique challenges affecting the healthy ageing of people living with HIV

With a newly emerging ageing HIV population comes a complex set of health-related challenges that need to be considered and addressed. People ageing with HIV have many of the same health-related problems as the general population including comorbidities and polypharmacy. But they are also at higher risk of experiencing other chronic illnesses such as cardiovascular disease, hypertension, Type-2 diabetes and chronic kidney disease than those who do not have HIV.4 With this comes the need to take life-long treatment for their HIV – often consisting of multiple components for as many as 40 years or more.5 A host of issues, such as depression, anxiety, financial stress and experiences of, or apprehension about, HIV-related discrimination prevent many people living with HIV from relegating their HIV to the periphery of daily life.1 This can have a detrimental impact on their emotional wellbeing and health-related quality of life, day in day out.6

Patient-reported outcomes (PRO) studies provide great insights into the multitude of issues affecting quality of life for people living with HIV. A recent survey into the quality of life of people living with HIV in 15 fast track cities (FTCs) sponsored by the International Association of Providers of AIDS Care (IAPAC) and in partnership with UNAIDS and Global Network for People living with HIV (GNP+) found the top worries about growing old with HIV to be:

  • Decreasing mobility and disability
  • Taking life-long HIV medication6
  • Decreased life expectancy 

Positive Perspectives – ViiV Healthcare’s international survey involving a total of 1,111 people living with HIV – provided further insights, showing that 61% (226 of 371) of people living with HIV aged over 50 felt that HIV limits their life, with 36% (132 of 371) responding that they tend not to plan for their future, despite treatment advances that enable longer life expectancy. Furthermore, the survey showed that 72% (783 of 1,085 surveyed on antiretroviral therapy [ART]) of people living with HIV sometimes worry about the long-term effects of their medicines. Approximately two thirds (66%, 716/1,085) of people living with HIV said taking their medication is a constant reminder of their HIV status, and over a third (37%, 402/1,085) said they frequently or quite often hid their HIV medications to avoid revealing their status, particularly amongst those who reported experiencing stigma or high emotional impact of HIV.8

Shifting the focus towards the ‘fourth 90’

If we are to truly optimise long-term care for people living with HIV, we need to listen and tailor healthcare to fully meet their individual needs including long-term physical and mental wellbeing and quality of life. The focus needs to shift beyond surviving with HIV, to the achievement of a ‘fourth 90’ – which aims to ensure 90% of people with a suppressed viral load have good health-related quality of life.1

“We need to shift our attention when looking at the management of HIV from only achieving viral suppression to creating a future where people living with HIV can expect to have a good quality of life, where they can thrive.

To help us reach the ‘fourth 90’ we need to improve understanding of the wider impact of living with HIV.

We are now at a pivotal point in HIV care, where a more holistic approach is needed. In addition to new HIV treatments aimed at addressing the worries about the effects of taking HIV medicines over a lifetime,8 people living with HIV and their healthcare providers need to have a greater understanding of the changing HIV healthcare needs over a lifetime. In this way people can see how treatment choices fit with their current lifestyle and long-term plans. This greater understanding will hopefully generate choice and lead to greater treatment satisfaction.9,10

Think long-term. Be empowered, live well! Think long-term. Be empowered, live well!

Empowering people living with HIV to have open discussions with their healthcare professionals (HCPs) and encouraging them to take more active roles in their therapy choices are critical starting points. According to the Positive Perspectives survey, people living with HIV who perceived themselves to be involved in their HIV therapy decisions were more satisfied with their treatment and had fewer concerns about side effects.8

For those who do not feel able to have such discussions with their HCPs, being able to identify peers or others who can advocate for, or support them, may be a way to enable them to be actively engaged in their care.

“People living with HIV are now on treatment for many years. It’s important, therefore, that as a clinician, I can create an environment in which people are empowered to speak to me about any concerns they may have. Not only about their treatment, but also their quality of life in general so we can ensure their HIV treatment fits with their evolving needs over a lifetime.”

With such powerful evidence isn’t it time to stop focusing on the short-term and put our efforts into longer-term care? This will enable people living with HIV to aspire to treatments that not only keep their virus undetectable and therefore untransmittable, but that also minimise side effects and support overall wellbeing, quality of life and healthy ageing.

The proof is there - open and active dialogue between people living with HIV and their HCPs is vital. We all have a role to play to make this happen in a much more consistent, widespread and holistic way.

By working together to put this knowledge into practice we can collectively ensure that no person living with HIV is left behind.

ViiV Healthcare is continually working to understand more about the real-world experiences and needs of people living with HIV and how including people in their care in this way can directly impact treatment outcomes.

References

  1. Lazarus JV, et al. Beyond viral suppression of HIV – the new quality of life frontier. BMC Medicine 2016;14:94.
  2. UNAIDS. 2018. 90-90-90 targets workshop. Available at: https://www.unaids.org/en/resources/presscentre/featurestories/2018/july/90-90-90-targets-workshop. Last accessed January 2021
  3. UNAIDS. 2019. Get-on-the-Fast-Track. Available at: https://www.unaids.org/en/resources/documents/2016/get-on-the-fast-track. Last accessed January 2021
  4. ASHM. 2017. Available at: https://www.ashm.org.au/HIV/training/BeyondViralSupression_JeffreyLazarus_13Aug17.pdf. Last accessed January 2021
  5. Trickey A, May MT, Vehreschild JJ, et al. Survival of HIV-positive patients starting antiretroviral therapy between 1996 and 2013: a collaborative analysis of cohort studies. Lancet HIV 2017;4(8):349-356
  6. Basavaraj KH et al. Quality of life in HIV/AIDS. Indian J Sex Transm Dis AIDS. 2010; 31(2): 75-80
  7. Exploring and defining what quality of life means for communities: An exploratory survey into the quality of life of PLHIV in 15 FTCs [Fast track cities presentation]
  8. The Positive Perspectives Survey Report. 2017. Available at: https://edgesuite.gskstatic.com/Viiv/viivhealthcare/pdf_files/master/main/positive-perspectives-survey-report-finalcompressed.pdf. Last accessed: January 2021.
  9. Coutler, A, Ellins, J. Effectiveness of strategies for informing, educating and involving patients. BMJ. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1910640/pdf/bmj-335-7609-ac-00024.pdf. Last accessed January 2021.
  10. Berkman ND, DeWalt DA, Pignone MP, Sheridan SL, Lohr KN, Lux L, et al. Literacy and health outcomes. Evidence Report/Technology Assessment No. 87. Available at: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.210.2733&rep=rep1&type=pdf. Last accessed January 2021.

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