Measuring HIV quality of life (sometimes referred to as the “4th 90”) is becoming a critical aspect of the continuum of care. Due to the increasing importance of HIV quality of life, GNP+ proudly announces the formation of the HIV Quality of Live Partnership made up of GNP+, Frontline AIDS, the International Planned Parenthood Federation (IPPF), NCD Alliance, STOPAIDS, UNAIDS, the World Health Organization (WHO) and the Global Network of Young People Living with HIV (Y+).
This partnership aims to develop a framework for a comprehensive model of measuring quality of life of people living with HIV, including measuring the impact of community-led interventions in order to make a strong investment case for these services. We are proud to announce this on Universal Health Coverage (UHC) Day as we need to move beyond only measuring biomedical interventions and mortality indicators.
Quality of life is an essential issue for people living with HIV. It affects our ability to enter and stay within the continuum of care and, ultimately, become and remain virally suppressed. However, quality of life is person-dependent and means different things to different people. Quality of life comprises three core components: prevention, care, support and treatment for HIV; prevention, care support and treatment for non-HIV-specific physical and mental health issues that lead to people living with multiple chronic conditions including disability; and, well-being and wider social, cultural and economic rights. Not dying does not mean that people living with HIV are living to their fullest potential. As people living with HIV, access to antiretrovirals, important as it is to our lives and well-being, is not the only thing we need in order to live better lives with the virus. We often do not have access to education, to jobs, to nutritious food, or to platforms where we can exercise our democratic rights. These, and all other dimensions of our life, influence the quality of life we live with HIV.
While happiness is a state of mind, quality of life is measurable and should be framing the way that we do our work on health. We cannot limit the UHC conversations to those about the economy, about health systems, or about health insurance. Health is a right. Because it is a right, we need to start talking not only about health systems, but systems for health. Systems that put the last mile firstand that meet the needs of the most marginalised must be ready, both technically and politically, to meet the needs of people living with HIV.
We are committed to ensuring that the ‘universal’ in UHC means every human being. We are convinced that the only way to do this is to make sure we reach those who are furthest behind, those who are most ignored and criminalized for their basic human identities by putting the last mile first.
As UHC marks the beginning of the evolution of health systems, on this UHC day, we would like to bring to the UHC deliberations the hard-learnt lessons from the global HIV movement, including the importance of community-led interventions and responses to improve quality of life. One of the most critical lessons coming out of the global HIV movement is that we are “people” first, and just like other human beings, the spectrum of needs of people living with HIV is wide and complex. Focusing solely on a single dimension of our lives, such as only using biomedical markers (or indicators), does not work. Addressing these needs – both health and non-health related – in a comprehensive, person-centred way, is critical to supporting how we live with HIV and, just as importantly, the quality of our lives.
Visit our webinar for more information on measuring quality of life for people living with HIV.