This statement was produced by the Quality of Life Partnership. The Partnership builds synergies among partners to support integrated, person-centred, peer-led and community-led interventions that optimise the health and wellbeing of people living with HIV. The Partnership is also working to coordinate the development of mechanisms to describe the measurement of the effectiveness and efficiency of interventions to improve the quality of life of people living with HIV.
The partnership comprises of GNP+, Frontline AIDS, the International Planned Parenthood Federation (IPPF), NCD Alliance, STOPAIDS, UNAIDS, the World Health Organization and the Global Network of Young People Living with HIV (Y+ Global).
The successful expansion of antiretroviral therapy to millions of people living with HIV and the possibility of preserving our physical health, have fundamentally changed the way we think about Quality of Life (QoL). For People living with HIV, QoL is an essential component of everyday life and not an optional extra. It affects our ability to enter and stay within the continuum of care and, ultimately, become and remain virally suppressed. Therefore it is essential that QoL plays a central role in policy discussions about the future of HIV prevention, care, support and treatment. We therefore welcome further action and the outlined steps on how UNAIDS will optimise quality of life and well-being in its strategy through integrated, people-centred services. However to strengthen the strategy and address the holistic needs of people living with HIV, we urge you to make the following amendments to the strategy text:
Consider how non-health related aspects influenced QoL outcomes
While it is welcome that the text reflects the strategy of integrating HIV care with other health services, it doesn’t clearly reflect how non-health related aspects influence QoL outcomes. Non health related domains (such as criminalisation and unfavourable laws, poverty, gender inequality and other legal, structural and societal barriers) frequently prevent people living with HIV to realise their health, social and economic rights.
It is particularly concerning that the text gives no reference to the role of stigma, discrimination and criminalisation in QoL outcomes. HIV-related stigma, criminalisation and discrimination deeply impact self- assessments of overall quality of life. Key factors include stigma (in families, communities and healthcare settings), discrimination, isolation and human rights violations. When this occurs, it has been linked to medication non- adherence and other negative health outcomes for people living with HIV. Whilst we welcome the text’s language around ‘respectful services’, this is not strong enough to consider the prevailing stigma and discrimination that people living with HIV often face in the healthcare setting.
It is also a missed opportunity for the text to not make a stronger link between poor quality of life and clinical outcomes. If a person living with HIV has a good quality of life, they are more likely to be able to access and adhere to antiretroviral therapy. In turn, they are more likely to achieve viral suppression.
The Quality of Life Partnership argues that a supportive foundation is essential for people living with HIV to enter into and remain in the continuum of care. This foundation would look to address people’s basic needs and desires, and support the most marginalised. Basic needs (including secure income, education, social protection, gender equality, personal safety for the most marginalised, support for people to be able to act without fear of punitive consequences or stigma and discrimination) must to be addressed alongside HIV services / as part of the continuum of care.
Stakeholders in the HIV response need to work together to address the socio-economic environment that can impact on the QoL of people living with HIV. These non-health related aspects of QoL which serve as critical social determinants of health – particularly for traditionally marginalised populations – should be better reflected in the next iterations of the UNAIDS strategy.
Champion community-led services and approaches
In considering optimising quality of life, it is disappointing that the text makes no reference to the role of community-led services and approaches.
Since the start of the HIV response, the leadership of affected communities and civil society organisations has been critical. This is from peer support to fighting for access to HIV treatments. Community-led initiatives have been shown to be an effective way to improve someone’s QoL. For example, linking people to services where they live and preventing disease progression. These initiatives have often proven to be more accessible, more relevant and ultimately more cost-effective than those provided by the health system.
Although community-led initiatives have been shown to be effective and cost-effective, they are often under-funded. In addition, they are often not integrated with facility-based services or seen as an essential component to support the QoL of people living with HIV. UNAIDS has the opportunity to help mobilise greater political and financial support for community-led services through better reflecting their role in optimising QoL within the strategy text.
Consider other co-Infections and co-morbidities
With TB still accounting for roughly one in three deaths among people living with HIV, we welcome the text’s strong proposals to address the twin epidemics of HIV and TB. However there is a lack of reference to other co-infections, such as Hepatitis B and C and NCDs, which also play a critical role in determining both someone’s HRQOL and QoL.
People living with common co-morbid chronic conditions face increased physical and financial barriers to access essential treatment, exacerbating impacts on health and wellbeing. As disability and reduced quality of life due to NCDs becomes the major health challenge in all countries, there is an important opportunity in identifying and investing in equitable, cost effective, integrated strategies.
The need for UNAIDS to better consider other comorbidities is of further significance considering the growing demographic of older people living with HIV and the research that suggests that additional chronic conditions increase as people living with HIV age.
We welcome the list of priority actions to achieve targets and results however these are very clinic-focused, not reflecting the work required from broader stakeholders to optimise QoL for people living with HIV. For example, an omitted priority is the need to work to create an enabling environment for quality of life for all people living with HIV by reducing stigma and criminalisation and other structural barriers. This includes pushing stakeholders to increase funding to support an effective civil society that both delivers services and conducts advocacy.
Donors, healthcare providers and civil society should agree on the robustness of data generated for community-led and person-centred HIV initiatives; and data on needs of people living with HIV in relation to other health conditions. Stakeholders should jointly establish clear and commonly agreed M&E systems for qualitative data from community-led initiatives and develop agreed indicators for measuring QoL; incorporating QoL in all normative models of what good quality HIV care looks like. We also call on UNAIDS and UNDP to conduct further research and establish a country-comparative database on the socio-economic well-being of people living with HIV. This database could be used to support QoL initiatives and related policy development.
The proposed strategy text should also reflect how HIV service interventions correspond with social enablers interventions accordingly with the new UNAIDS 2025 target.